"You're not alone!" 2000 Guestbook Back to My Home Page Add to Guestbook

Hello everyone. Hope everyone had a nice and painless holiday and I am also wishing everyone a happy new year. I am sitting here in pain again and today it just wont stop, I have tried the heating pad and no relief, I have taken 60 mg of oxycontin and nothing, I am ready to cry, my face feels like it is falling off and my jaw feels as if someone has punch it with all of their might, I just hate this, ,y neuro upped my tegretol to 400 in the morning and 600mg at night, so far no help. tonight I cant even look away at something with just my left eye b/c it hurts so bad. i had to take out my contacts b/c i thought that was the problem but it was not. I feel like I am at my wits end. I leave my house and I look like a mummy from having my face wrapped up so tight to protect it from the wind. This is not fair, Iknow people have other problems but this is one that they really need to find a cure for. I am in so much pain and dont know where to turn right now, the ER wont help and my eye is really bothereing me. I am scared and feel so alone and I know that I am not but that is how i feel. I am now in tears and cant see the keys anymore so I need to go but thank you all for listening t me. Lisa
lisa <lisae0608@aol.com>
phila, pa USA - Sunday, December 31, 2000 at 21:09:13 (PST)

When I was 20 (1978) I had some minor dental work done and the pain began in my jaw, running along the the jaw bone from my top of my ear down to the center of my chin on the right side. Having never heard of tic douloureux I assumed it was still a dental problem. After being assured by my dentist that my teeth were ok I went to other doctors...internest, ENT's etc. No one had an answer for me just gave me pain RX and sent me on my way. I finally was convienced that it had to be a dental problem I demanded that the dentist pull two bottom teeth, which he was total against. He finally did only to not have the pain go away. Finally I found a neurosurgeon that told me I had tic douloureux. He put me on Dilantin which after about a week the pain went away...I was cured...so I thought. In 1996 I had more dental work done on the right side and alway on the bottom teeth that seems to triger it the pain came back. I cant tell you the fear I felt because the first time I had the pain for 5 months, and unlike what I have been reading about this the pain didnt come in short spirts it lasted almost constantly for those 5 months. Immediately I called my doctor and he sent me Dilatin again and it did the trick. This seemed to happen only when I had dental work done on the right side and lower teeth only...Last week I had a bottom tooth on the left side worked on and now it has attacked the left side of my face. I took the Dilantin again but pain didnt go away...Had a root canal done and still the pain is there. It does not seem as severe as before and comes in spirts but can last for hours at a time. My question to anyone out there is does it seem to come at certain times of the day....I can almost set my clock because it comes around 5pm every day at its most severe...during the day I have short lightning attacts but they last only minutes...but once the evening gets here it hits with a vengence and does not let up...Im take vicodan ES and this does seem to help but I find that some doctors think you must be a drug addict when you ask for pain meds. I went thru 15 pills in 8 days and the doctor rolled his eyes like I was abuseing the drug. If he only knew that I was suffering a long time before I finally gave in to take the pill. Of course this is the holliday weekend and I cant see a doctor until sometime next week. Ive heard that there are other meds beside dilantin which Im going to ask to try. One other thing and I dont know if anyone else has experienced this but when an attact hits me bad I seem to salivate more than i should...does this happen to anyone else or is it just me? I know this is long but i would appreciate anyones input.Thank you and Happy New Year to all
lorie pieper <mpieper1@home.com>
jefferson, la USA - Saturday, December 30, 2000 at 21:24:57 (PST)

HI! My name is Alexis. I was just recently dignosed with TN. I need advise and I guess support on how to deal with this. It has been two weeeks since this episoded started. It comes and goes. My doctors have increses my meds but I am not sure if it has helped. How long can this go on?? this has been the longest one so far and I am not sure how to handle it. Is there things I can do with out having to take any more pain killers or do I have to ride it out and hope it ends so. I want to thank you for this web site because I thought I was one only person under 50 who has this. Does anyone know what causes this??? Just wanting info. alexis
Alexis <alexiskristine@yahoo.com>
Atlanta, GA USA - Saturday, December 30, 2000 at 18:18:19 (PST)

HI. i haven't written in several days. I noticed one who wrote in wrote that misery loves company and that's what we are. not word for word, but close. but if we didn't write in: #1 everybody would think they were suffering alone, that it was as rare as the neurosurgen told you (me)and that it was an 'old person disease. i had no resources 5 years ago. i wish to God i did. i would have NEVER had the surgeries(3). they are very risky and for me, helped only never to a few months. #2 we find new medications to try. work or not, we have another option we can try. #3 we find friends, some fleeting, some lasting, but friends all the same #4 when someone has success, we cheer and wonder if one day, we to can find it too. it is what keeps us going over the rocky times. i thank god for this forum and think everyone who reads or writes in it does the same and lets keep it up until one day, some reseacher comes up with a cure! love to all, a good day to all!!! Char
Char <harleysmom@yahoo.com>
SLC, UT USA - Friday, December 29, 2000 at 14:34:10 (PST)

Hi fellow sufferers! My name is Tony. I'm 35 and have been suffering from TN for the last 3 years. In that time I guess its come and gone 5 times, each time staying with me for a few months and then suddenly, I wake up one morning and its gone. Trouble is, a few months later it returns and is always much more painful than before. At the moment it feels like my face is being ripped off. I take Carbamazepine for it which works great - except if I take too many they make me feel sick. I wondered if any of you have had surgery to cure TN? I recently saw a TV program that showed the operation but it looked pretty major stuff and I'm not sure if I can get it done in England. Im undecided whether to pursue the surgery route but Im just afraid the TN will get worse in the future. Anyway, I really would love to hear from anyone who has had the surgery and I hope you all have a happy, pain-free, New Year.
Tony Steeles <tnsteel@aol.com>
London, England - Thursday, December 28, 2000 at 20:20:22 (PST)

I actually went two days without needing to take pain meds. In the place where the pain had been sharpest, there was just a slight buzz. In the pain circle around the left upper quad of my head and face, there was a presence, a reminder of the pain. I thought we had the neurontin dose ballanced and that I would not see any more attacks. Then yesterday afternoon an attack started. It came on quickly. Within 30 minutes I was taking pain meds. It went on all night and is still here today. I was shocked that it came back so soon and grew so swiftly. Is this typical? Mary, sorry for your experience.
Don Williams <donwilli@flash.net>
Lewisville, TX USA - Wednesday, December 27, 2000 at 07:23:56 (PST)

My dad was experiencing sharp pains just above his forehead on the right side. Since a heart attack in '89 he has been less than communicative and seemed willing to suffer. Thank God my mom went on the internet and found resourses that pointed to Trigemenial Nueralgia as the culprit. At first their physician was sceptical because dad would not show symptoms in the office and denied having any pain. Eventually the episodes became more frequent and during another office visit dad had a spasm and mom was armed with documentation for the sysptoms and treatment. The doctor prescribed tegretol(Carbamezepine), and after just one dose the pain has gone. It has been several weeks and there has been no recurrance of the symptoms.
William
USA - Sunday, December 24, 2000 at 12:39:13 (PST)

Okay friends, I've been pumping up the positive and now I'm fighting a doozy of a TN attack on the right side. I'm drunk with extra dosage of neurontin, baclofen and have even graduated from plain Tylenol to Esgic Plus. But I still have time to recover before Christmas day. I've celebrated many Christmases in a fog of drugs and pain. Hope this TN attack runs its course quickly. It's days like this when I'm really glad I've taken time to reinforce my memory of my strong days with written words of hope--reminds me when I'm down that better times are ahead EVENTUALLY. Also helps me fight the dpression that accompanies the pain. Have a good day, friends.
Mary
USA - Saturday, December 23, 2000 at 12:53:29 (PST)

Mary, and Mary Ann, thanks for your positive comments. You both made it to my positive reinforcements book. It's greaat that we have someplace to discuss our woes, but even a greater blessing that we can post our positive messages that will help others see a brighter dawn. KEEP THE POSITIVE NEWS COMING! WE CAN, WE DO, OVERCOME!
Don Williams <donwilli@flash.net>
Lewisville, TX USA - Saturday, December 23, 2000 at 09:41:02 (PST)

Mary Ann, I'm glad my entry greeted you on a difficult day. It's important for us to have a forum to express our fear and frustration to the TN fellowship. There's nothing worse than feeling alone with suffering. Loneliness brings its own pain. But I believe we can gain strength from each other, also, if we remember to share our better moments.
Mary
USA - Friday, December 22, 2000 at 22:10:39 (PST)

Mary---I just had to respond and let you know how much I appreciated your comments in the last entry. The day I came home from the doctor with the dreaded TN diagnosis, I went to bed for the rest of the day, thinking that my life was basically doomed. Most of the research I had done (I had suspected for months that I had TN before I was actually diagnosed) painted a very bleak picture for any kind of future I could look forward to. Since then, I've come to my senses and have decided that I'm not going to let this thing take total control of the rest of my life. TN demands its "moments" of attention by striking when I least expect it, but I have made a conscious effort to ignore it as best I can, and use the medicines available to help control it when it can no longer be ignored. But I have also learned to count my blessings. My pain isn't constant, and as you said, Mary, it isn't a terminal illness from which I can never expect to recover. I don't know what the future holds for me as far as this affliction goes, but there isn't a person on this earth who knows what TOMORROW holds in store for them, let alone next week or next year. So I figure the best course of action is to live for today and be thankful for the fact that I am not in constant pain with this thing. I feel great sympathy for those who have written who ARE in severe, constant pain, and I pray that research is being done that will put an end to all this suffering. I have to add that this guestbook has been a great help to me, and I'm very glad I found it.
Mary Ann
PA USA - Friday, December 22, 2000 at 18:51:59 (PST)

We're not doomed to a life of pain! TN is controllable with medication for some people. Surgery has worked for others. Our web site voices of despair are the unlucky ones. Maybe the drugs don't work for you or maybe your spirit can't tolerate the debilitating effects of your very real pain. Maybe you posted at a tough time, but are too busy to log on when you feel okay. We're all unique. No two nervous systems or brains or hearts are exactly alike. That means there's hope for a full life in spite of a scary diagnosis of TN. I believe I've had TN since childhood and was only diagnosed about five years ago when I began seeing my present neurologist for another disease. It was a relief to have my pain acknowledged. All my life I thought I was just a wimp. I was ashamed of my pain, my weakness. Now, I accept this periodic intrusion labeled Atypical TN. I know exactly what the pain represents and what it doesn't (its not a fatal brain tumor or incurable sinus infection or a psychosomatic manifestation of some nasty neurosis). I know the pain will run its course and I can eventually resume my activities. And I am blessed with family and friends who stick by me, who celebrate my "good" days and help me tolerate the "bad" ones. I'm also blessed with an increasingly thick skin when it comes to others' ignorant judgements of my pain threshold. After a few years of struggling with fear and anger, I'm now convinced I'm not doomed. I'm a person who just has a painful condition that sometimes makes it difficult to acknowledge blessings. I wish you well. Enjoy these special days moment by moment at whatever level of pleasure is possible.
Mary
USA - Thursday, December 21, 2000 at 23:51:54 (PST)

I was diagnosed with trigeminal neuralgia in June, this year. It first started as a dull ache in one of my teeth, but since I also suffer from TMJ discomfort, I attributed the ache to that. After a few days, I was drying my face with a towel and I got a "shock" from the top of my cheek all the way down to my lower jaw. I touched my cheek and the same thing happened again. Over the next week, it progressively got worse. I visited my doctor, who referred me to my dentist, who said there was nothing wrong with my teeth. The pain was so excuriciating that I had to keep from crying. I know one time, it took me 30 minutes to eat a small piece of chicken. My doctor, whom I have sinced left, kept blaming the pain on my teeth. Even after I told him that my dentist had given me a clean bill of health, he insisted that it was my teeth. I also had a sinus x-ray done, which was negative. I believe my doctor got tired of me, but would refuse to refer me to the oral surgeon who had treated me previously for my TMJ (I had previously been referred to the oral surgeon by another primary doctor.). He finally prescribed Tegretol, but I was afaid to take it since I live alone and even Tylenol makes me sleepy. I placed my faith in God, and went to a local church to a healing service. Believe it or not, that did it. I have been pain-free since July. I do know that this can reoccur, but I have such faith, that I don't worry about that. Just wanted to share my experience with you.
Irene Lopez <sugardrake@hotmail.com>
San Antonio, TX USA - Wednesday, December 20, 2000 at 14:57:05 (PST)

Just a few days ago I posted an appeal on this site for information and answers. I feel now I must put up something to cancel those negative words I posted. I have heard positive things from patients who are in recovery and are functioning, not on dissability, but earning their living. I keep the positive reports in a binder, and send the negative to the wastebasket. KEEP THE POSITIVE COMING! Thanks and God Bless you who are sending the positive messages. 2170 Brady Drive, Lewisville, TX 75057. WE CAN, WE DO, OVERCOME!
Don Williams <donwilli@flash.net>
Lewisville, TX USA - Wednesday, December 20, 2000 at 09:54:54 (PST)

My name is Michael. In 1997, when I was 21 years old, my neuralgia began. I was living in a rural setting at the time..no vehicle, no neighbors..a cabin in the woods. For three months, I ignored it as best I could. I tried to sleep as much as possible for I didn't experience any pain while slleping. I had only been having the "quick-bolts" of pain, up until that point. I woke up one morning and yawned, triggering an attack. This bolt didn't just end though. It ended up lasting 5 days, day and night. It stopped for about three hours, then continued for another 3 days. It was the same "flashing" pain, only constant. I had to move back in with my parents and went to my family doctor about two days later. He told me right there that it was TN. This was in '97. He put me on the prescriptions that you have all been on, but my pain was more severe and the medication wasn't doing anything. For the next three years I went to about ten specialist, who all basically said, "There's no way that you have Trigeminal Neuralgia...you're too young, you're male..it's most common in women over the age of 65...I heard it all! In December of 1999, I was reffered to The Pain Clinic at the University of Washington Medical Center, in Seattle, Washington. My doctor's name was John Loeser. I got ready to be called in, hear the same old mumbo-jumbo about how it was impossible for me to have TN, but this time was way different. He asked me about three questions..I answered..and he then stated, "There's no doubt in my mind that you have tic." I nearly started to cry. I had just gone through three years of being "pushed" away from doctors who thought I was absurd for thinking I had TN, now this guy tells me in all of about two minutes, that not only he knows for a fact it's TN, he also had three option for me to choose from as treatments. I ended up choosing Microvascular Decompression. At this point, I really didn't care if he put a scalpel or a bullet in my head...really. So, on February 25, 2000 I underwent surgery, performed by Dr. Loeser and several other doctors and nurses at the University of Washington Medical Center. I went in on the morning of Friday the 25th, was out of surgery and in ICU by noon and was released from the hospital that very Monday, in the morning. I have been pain free since the operation. I still have slight sensations in the brow above my right eye but they aren't at all painful. By looking at me, you wouldn't be able to tell I had had major surgery. The scar behind my ear has been covered by my hair. I still have a 50-cent piece size of skull that is no longer there and it's still kind of soft and tender. Muscles will eventually fill the void. As we all know, all treatments of this are exactly that. There's no cure, that I know of, we are only treated. I have a 50% chance of being pain free for 10 years and an 80% chance for five years. Tomorrow, the 20th of December, is the anniversary of when I went to see Dr. Loeser last year. I am very grateful to him and to all of those that supported me through this horrific ordeal. I would also recommend Dr. John Loeser to anyone seeking relief from TN. He is a very straight-forward, compassionate man. He practices at the Pain Clinic of the U.W. Medical Center, in Seattle, Washington. If you would like, you may email me if you would like his office numbers or any other info I may know. Help is out there...sometimes it just takes awhile to find it.
Michael Halpin Jr. <marthas_protege@yahoo.com>
Raymond, WA USA - Tuesday, December 19, 2000 at 17:45:24 (PST)

I have suffering from depresson and fear now for almost two years,my wife left me 2 months ago and at the time life is really worthless but some how God will get me thru it.
Jack Hunter <hunter99@pagosa.net>
USA - Tuesday, December 19, 2000 at 16:03:25 (PST)

KIM MORSE: I'd like to respond to your message but something is hanging up your address at my end. E-mail me and I'll send a reply.
Mary <mcormick@tecinfo.com>
USA - Monday, December 18, 2000 at 22:56:32 (PST)

I've been fighting through pain in my teeth, ear, jaw for about the last six months. It began with a chipped tooth back in August 2000. When I was finally able to get in and get my tooth checked out, I suddenly came down with a pain in my jaw area. The pain was so intense, that I actually thought if I would have had a gun, I would have shot myself. Thats pretty sad for someone to think! However after talking with my brother who's been battling this disease, he said the same exact words...Thats where I'm getting nervous. After going to a couple of doctors, the last one I saw diagnosed me with "TMJ". After going through several dental operations, root canal, wisdom teeth removal, the pain went away...for about two days. Now the pain has returned. The initial pain was similar to having an earache when I was small. My dentist gave me Vicodin to help with the pain that he thought might have been from the root canal. He said to take no more than 2 tablets every 6 hours and that should take care of the pain. I thought I was in heaven when he gave me this prescription. Only problem was, it didnt even phase the pain. The pain has since spread to my lower lymph nodes in my throat. I feel the "electrical shock" pain almost endlessly. I called my Doctor back to see if he thought I might have what my brother has. He called back to say he didnt think that was the problem. He gave me some Zithromax to take for five days which he said should do the trick. I'm praying that this does the trick. Like I said before, my brother has been battling this for six years and he is on a drug called tegretol that he said helps with the pain but makes him real groggy. I'm considering switching doctors and going to an ENT to see what he has to say about this "mystery" pain. I feel for all of you going through this and I hope that I dont have it, but from what my brother has told me, I have the makings of it from the history I've gone through the last six months. I appreciate reading all the stories of the people who are going through this dreaded disease. God bless us all.
Dave <dave@iywe.org>
In USA - Monday, December 18, 2000 at 20:50:24 (PST)

I have just been diagnosed with Trigeminal Neuralgis, Atypical. After years of intermittent pain and mis-diagnosis, my pain became constat in August, 2000. I have gone from 300mg of Darvocet daily to 1800mg. I have just started on Neurontin at the lowest dose, 900mg. What I am reading on the web indicates the path of this disease is more pain treated with more durgs until the drugs loose effect, then surgery that parlyzes your face. Is this about it? What concerns me most is the rate the disease progresses. I am reading that some people have had this for years, while I have been taking pain drugs for only a month and a half and during that time have greatly increased the dosage. Can I expect that the Neurontin, I,ve just srarted, will eventually reach a stage where it will control the pain and I can quit the darvocet? Will I be able to function in an intellectual environment where my livelihood depends on a sharp mind? Is this a disabling condition. How are others surviving financially in the advancd stages of this condition? I've got to know. Any answers?
Don Williams <donwilli@flash.net>
Lewisville, TX USA - Monday, December 18, 2000 at 11:36:27 (PST)

Hello everyone and how are you?? I just have a quick question for people out there>>> how many of you have fallen from these medications??? Well so far in the past 2 months I have fallen twice and luckily I haeve not gotten seriously hurt, but lat me tell you for about 3 days after teh fall I am really sore ffom the fall. The medicine makes me so dizzy, yesterday I was in my daughters room and everything was just spinning around me, I really thought that I was losing my mind but as long as I stayed still, the dizzyness was not so bad. Why is it that you can be painfree and feel great and then all of a sudden, the pain comes back and with a renence. What is with that and why does that happen? I really would love the answers to the question. Let me know if anyone out there has had this happen to them and what did you do to make it better. please write back if you have any information that can help. Lisa
lisa <lisae0608@aol.com>
phila, pa USA - Sunday, December 17, 2000 at 20:21:02 (PST)

tingle on my left side of cheek, and my jaw hurts sometime my mother has bad tn, could this be the start for me. Thank you.
Carol Larkin
USA - Sunday, December 17, 2000 at 13:44:06 (PST)

I would like to know if anyone has had the gamma knife surgery. If so would you please e-mail me and let me know the outcome. I have had TN for 9+ years and it is getting much worse. I hope someone can give me good news about this surgery. Thank you for your help!!
Joan Larkin <joanlrk@aol.com>
USA - Saturday, December 16, 2000 at 14:35:07 (PST)

The weather has been cold and I am wondering if maybe that has something to do with the pain I am having. The worst yet.It has been 9 yrs. I am very upset and tired of this pain. I hope everyone has a much better 2001.
Joan Larkin
USA - Friday, December 15, 2000 at 13:56:50 (PST)

My doctor was asking me this evening if I knew of anyone who has tried a new drug called zanaflex (tizanidine hydorchloride) for their TN, so if you have please let me know, seriously searching for new meds since severe tegretol allergy has developed
K. Campbell <nervepain@hotmail.com>
Canada - Thursday, December 14, 2000 at 22:51:05 (PST)

Iam a divorce female my age is 43years and iam very lonely and need someone to talk to iam very picky because of the thing that has happen in the past my heart is very heavy and i don't known what to do.
rea
USA - Thursday, December 14, 2000 at 16:31:55 (PST)

WHAT A NICE PAGE DEB. LOVE YA
TERI <teri@creps.org>
BHC, AZ USA - Thursday, December 14, 2000 at 09:21:19 (PST)

I was diagnosed with TN in October 2000. I won't bore you with all the usual horrifying symptoms, but I'm really confused. After I investigated every sight on the Internet I could find, I was truly speechless. The first doctor that diagnosed me at a local emergency room and he simply told me to take the Tegretol he prescribed me and everything would be fine. He of course referred me to a neurologist who confirmed that I had TN and she says this is a very controllable disease and assures me that there is no need to be so upset about all the testimony I have read. So far, I have had no more pain. I do, however, have tingling and numbness for a few seconds at a time now and then. It seems I have been very tired and depressed for months even before I went through all the hellish pain. My vision and hearing have not been as sharp either. I seem to also have an increase in appetite and an extremely low libido. I am currently taking 800 milligrams of Tegretol XR daily and have been relatively pleased with the results. I went for a check up this week and the doctor have asked me to skip a dose of Tegretol and see what happens. Of course my mouth fell to the ground! I can't imagine experiencing that pain again! She says if I don't have a seizure she will be able to lower my daily dosage. She acts as though I am totally reacting about my concerns of the long term affect of this disease but everything I read tells me I will definitly live a live of doom! Who is right? Does it help that I was diagnosed within a month of my first seizure? Confused in Alabama, who do I believe?
Kim Morse <Morseland@aol.com>
Meridianville, AL USA - Wednesday, December 13, 2000 at 20:04:52 (PST)

I get a lot of e-mail about root canal problems, here is one that I received last year. 9/7/99 Years ago my mother had a root canal job. For years (9) after that she suffered from what the doctors called Trigeminal Neuralgia, just as you say. She kept going back to the dentists and asking them to remove the tooth but they wouldn't. She ended up having THREE surgeries ON HER BRAIN to try to get the pain to go away. They told her she should not have any pain, in fact, that she should have no feeling at all, but she continued to have pain. Everyone, including her family and friends, calls her a hypochondriac. Finally after insisting on it, she had all her teeth removed. Guess what? No more pain.
Melanie <fireman1000@yahoo.com>
USA - Wednesday, December 13, 2000 at 12:36:17 (PST)

HI everyone, but will Judy 519, remail me with correct way to send message back. i'v tried 2 ways and they were returned both times. wanted you to know i wasn't ignoring you. guess i'm doing better these last 2-3 days. no more do i take meds from 2 different doctors at one time!!! at least without finding the reaction of mixed meds. PLEASE no one else do that either. the pharmasist will probably be the best guide. i was really bad there for a couple of days and still trying to bounce back. does anyone still want to try the news magizines if the elections are ever finished? do you think we should all try at once? anyone with other thoughts? we need help. may God be with everyone of us... Char
Charlene <harleysmom3@yahoo.com>
Salt Lake, ut USA - Tuesday, December 12, 2000 at 16:20:45 (PST)

I had mvd surgery nov. 20 and now I have no pain!! It is absolutely amazing. I would recommend mvd surgery for anyone suffering the agonizing pain of tn. I was very scared about the surgery, but after five full months of nonstop pain, I was ready to let anyone cut on my head. The surgeon said I had so many arteries on the nerve that he couldn't count them, he just started stuffing teflon everywhere. I did have a post operative headache that was pretty bad, but it cleared up within several days with the help of pain pills and muscle relaxers. At least it was the kind of pain that will stop! Now my only complaint is dizziness and a loss of hearing in my left ear, but the dr. says that will go away soon, so I am just as happy as I can be, especially when eating, brushing my teeth, all the things I couldn't do before. Anyone who would like more information about the surgery is welcome to contact me because I am so glad I had it done.
Susan <annainga@aol.com>
USA - Tuesday, December 12, 2000 at 06:52:55 (PST)

I could sit here all night and read these guestbook entries. Misery loves company, right? No pun intended, but there's truth to that statement. There's some sort of odd comfort to know you're not alone. I'm in the midst of my second bout with what has been tentatively diagnosed as TN by my osteopath. During my first visit 10 months ago, he told me that I had some sort of "nerve inflammation." I asked if it could be "tic delereux", because my grandmother was diagnosed with it at age 70, and I saw first-hand what agony she went through. The doc said he didn't think it could be that, and put me on an anti-inflammatory, which did no good. I reluctantly dedided the pain was something I'd have to learn to deal with, and two months later felt very relieved when the pain gradually subsided, and I was pain-free for 6 months. Then the dragon reared its ugly head once more, and my doctor has finally agreed this sounds like TN. I get the same lightning-bolt pains many of you have described. The trigger points move around though, sometimes being my chin area, other times, the side of my nose. This whole thing is very mystifying. Sometimes it's agonizing to brush my teeth, then that's gone, but the simple act of smiling sets off the "lightning storm." Washing my face and applying makeup can be a "jolting" experience. Does TN act this way for anyone else? How about any hereditary connections? I'm set to see a neurologist in Pittsburgh in two weeks, but I'm not expecting miracles.
Mary Ann <mahartzell@usachoice.net>
PA USA - Thursday, December 07, 2000 at 20:47:59 (PST)

I am wondering if anyone ever finds that sometime after being on the same medicine and the same amount you ever have problems,like dizzy and very tired. This has happened before,I go along with the same medicine and after a refill I feel dizzy. My doctor told me to have cvs give me a new batch,they were not happy but they did give me a new pills. I have some real pain today, but what can we do. Joan
Joan Larkin
Ma. USA - Thursday, December 07, 2000 at 17:00:42 (PST)

I am a 57 year old woman, recently diagnosed with TN. I am currently taking 900 mg of Trileptol per day. The meds work but have recently caused a full body rash. I don't want to live like this and am considering Gamma Knife surgery. My doctor thinks this is over-kill however, after reviewing the research at various hospitals in the region (the South East)I am ready to take the step. Do any of you have any first-hand experience?
Charlotte Glassman <clt@worldnet.att.net>
USA - Wednesday, December 06, 2000 at 16:24:58 (PST)

I've had TN since Sept., Diag. in Nov. Tried Carbatrol, it gave me a rash - Vicoden made me sick. I'm now on 300 mg of Neurontin a day - it's helping, but I still have pain some times when I eat, smile, brush my teeth. I was in an auto accident almost 2 years ago where I had a concussion. I had a lot of dental work done this year and had my teeth bleached this summer. Don't know if any of those would be the cause. I just hope it will go away some day as you all probably wish.
Carmen <cehlers@wabeno.k12.wi.us>
Townsend, WI USA - Wednesday, December 06, 2000 at 15:15:03 (PST)

I forgot to mention that in the initial treatment I was given Neurontin which proved pretty ineffective. Also, anyone out there who is just starting Tegretol, hang in there for a couple of days, the stupidity and sluggishness will go away and your faculties will return to normal!!
Mary Alice <Mmaryalice@aol.com>
Sacramento, CA USA - Wednesday, December 06, 2000 at 14:04:31 (PST)

I finally diagnosed myself about five years ago after doing some research in medical books. It's really quite astonishing that most doctors will not think of TN when you're describing symptoms. It was thought to be everything from sinus infection to migraine. The interesting thing about that is that the symptoms are so distinct and easily describable it's hard to understand why it's so hard to diagnose. We all wonder about the origin of this peculiar damn thing, and to add to this store of anecdotal suggestions: I have had of course the usual wisdom teeth extraction and the TMJ that many times follows. However, there was one event that made me wonder because it followed so close in time the onset of my TN, and that was the laser treatment I had to eliminate tiny blood vessels in my cheeks. I think it is of interest that the right upper quadrant (where mine seems to be) is also where the majority of the laser treatment was for the skin condition. Perhaps there is no significance to this, but I have wondered. Anyone out there have a similar event? It certainly is an indescribable thing to endure, and it's completely debilitating. Mine is kept very well under control with about 800 mg of Tegretol daily in time release tablets. Hang in!!
Mary Alice <Mmaryalice@aol.com>
Sacramento, ca USA - Wednesday, December 06, 2000 at 13:56:51 (PST)

I just left my first comment a few minutes ago. One important thing I forgot to say is that I had about 5 or 6 unnecessary root canals done on me in my 20's. I was also diagnosed with TMJ. I have read many other comments where people describe TN having started with some sort of dental procedure. I wonder then if I do have TN and should seek treatment for it. Some people have suggested I see a chiropractor. And, I did try accupuncture which worked some of the time. Does anyone else suffer so terribly from low pressure weather systems? Again, any input would be greatly appreciated. Good luck to all. Wendi input would be greatly appreciated.
Wendi <wbrandeis@home.com>
Cheltenham, PA USA - Tuesday, December 05, 2000 at 18:28:18 (PST)

I am not sure if I have TN, however I am desperate for help with my chronic headaches. I am 37, mother of a 5 year old boy, and have had headaches since I was around 7. I have been to many doctors, tried many meds (amerge, maxalt, fiorocet, immitrex, etc.). Always thought they were migraines. 99% of the time the pain is on my left side (above my eye, below my eye, the base of my head, the top of my head). I also have chronic sinusitis, but 2 ENT docs. have told me it is not the cause of my severe headaches (which can last 10 days). I saw a neurologist who said my headaches are from trauma I had as a child which caused bulging cervical disks (proven by MRI). He gave me 1 nerve block shot so far, but that has not helped. The weather has a definite impact on my headaches. And, if I go to the gym and run or do some sort of cardio, I ALWAYS feel better. Once I stop the running, the headache usually returns very quickly. I do not have the "lightning" type pain that you all seem to have. Mine is more pressure (like a truck running through my head!). Please, if anyone has any input, I would greatly appreciate it. Thank you. Wendi
Wendi <wbrandeis@home.com>
Cheltenham, PA USA - Tuesday, December 05, 2000 at 18:23:48 (PST)

i haven't been on the site for awhile. have been battling a lot of things. i know they are making my TN worse, but i wanted to tell the person wh is concidering MVD.. think hard!! i've had it, then had it on the other side, then nerve clip, then needing something for both sides. i'm absolutly at my wits end. i'm on 2400mg of Neurontin, 800(but i sneek 900mg of Tegretol, 150mg of Amitriptyline. like another person, i also have Fibromalgia..using nothing extra for that. i'm a walking zombee i forget things people tell me while they are talking! i bet if we all listed everything we have, they would form a pattern. this curse has got to come from something, not air. there are too many of us. but please, people who are concerting MVD, pleasae consider hard. i pray for all of us. we must stick together. as soon as this election circus is going on, lets hit the news magazines again. they'll be surffing for items to write about. if somehow we could convince them that their are millions of people wo would be interested. my spelling is awful. the mush i used to call a brain can't figure out how to convert portions of ot into words, then spell them correctly. lol love to all, lets stick together. will be ahppy to write to anyone who needs more info on MVD. Char
Charlene <harleysmom3@yahoo.com>
UT USA - Tuesday, December 05, 2000 at 12:09:11 (PST)

After reading the comments in your Guestbook I feel compelled to respond. I too sufferd with TN for 7 years and 8 months. Had 78 facial injections, two stellate gangilion blocks, phenol injections, visits to many hospital and clinics including the Univ of Va Hospital, the Medical College of Va, the Mayo Clinic at Rochester, Minn, The Mayo Clinic in Jacksonville, Fa, Pain Management Spoecialist from the Cleveland Clinic, and had the rhizotomy radiofrequency procedure accomplished at the Univ of Cincinnati - all indicating surgrey was not an option and that medication would be the only source of relief. Through research on the internet, found about the microvascular decompression procedure that was developed by Doctor Peter J. Jannetta, now located at the Allegheny General Hospital, Pittsburgh, Pa. On 28 September of this year, he performed this procedure for me - within a couple of hours I was awake pain free and out of the hospital on the third day. Prior to surgery, I was taking 4,800 mg of neurontin per day and what ever amount of klonopin that it took to knock me out when the pain became unbearable. Now I am esscentially pain and medication free. Occassionally, I have a slight twinge but nothing like the original pain. Dr. Jannetta developed this procedure and has performed many thousands of successful surgeries since 1966. In addition to being an outstanding and world renowned neurosurgeon, Dr. Jannetta is a very caring and thoughtful gentleman. Do not hesitate any longer!!!!
Barbara Harris <bharris@intelos.net>
Staunton, Va USA - Tuesday, December 05, 2000 at 07:17:56 (PST)

Have TN related to Multiple Sclerosis. Medication used to work fine.. now I am at a loss.
Janice L <Mswompa@aol.com>
WA USA - Sunday, December 03, 2000 at 23:43:49 (PST)

where the hell are all the so-called experts? I know, they are all busy waxing down their mercedes and golf clubs. After two years of speaking to doctor after doctor I had to diagnose myself with geniculate nueralgea. Good luck to all and God bless.
GENTRY <gentrys-abc@gol.com>
japan - Sunday, December 03, 2000 at 21:54:55 (PST)

My name is Harmony Kennedy I live in Auburn California, an hour from Sacramento. I will also be having oral surgery in Febuary of 2001. I have an underbite that is really bad.It sticks out 3mm from my top. It really impares my social life. I dont have any friends I think some of the kids at school are afraid of me. So I hide alot. I'm not sure if I'll be getting my surgery because I dont have an oral Surgen. I wish I was normal but wishing wont solve my problems. I hope you will E mail me soon. Harmony
Harmony Kennedy <Kennedy@foothill.net>
Auburn, CA USA - Saturday, December 02, 2000 at 15:40:37 (PST)

I was diagnosed with TN in 1995 . Tried all the usual meds Nothing worked, just turned me into a zombie.. Iwas at my wits ends . A Dr. freind of mine told me to try Dolabid( an antiinflammatory). Within 36 hrs my family was able to be around me again. The relief was astounding! I am now able to go months with no meds or Pain. When I start hurting I will take percocet until the Dolabids take over and then one Dolabid a day is usually enough to control the pain. I have found the pain is always more severe in the Winter. Tom Martinez
Tom Martinez <jeresary@aol.com>
Gallup, N.M. USA - Saturday, December 02, 2000 at 13:28:36 (PST)

I was diagnosed with TN in 1995 . Tried all the usual med Nothing worked, just turned me into a zombie.. Iwas at my wits ends . A Dr. freind of mine told me to try Dolobid( an Antiinflammatory). Within 36 hrs my family was able to be around me again. The relief was astounding! I am now able to go months with no meds or Pain. When I start hurting I will take percocet until the Dolobids take over and then one Dolobid a day is usually enough to control the pain. I have found the pain is always more severe in the Winter. Tom Martinez
Tom Martinez <jeresary@aol.com>
Gallup, N.M. USA - Saturday, December 02, 2000 at 13:25:22 (PST)

I'm now 43, diagnosed with tn in 1993 after the typical root canal mis-diganosis. I was cruising along until about a month ago by getting alcohol nerve block injections about every 6 months and by taking 400mg of tegretol a day. But the dreading twinges returned, it was nearing six months since the last block so i went for one, then two, then three, the twinges became jolts and jabs, the unpleasant but trusty shots were no longer working, The DDS that had been doing the injections is puzzled. Currently on Neurontin 1800mg/day AND tegretol 1200mg/day. Pain is under control but so is my mind! My work, life, and age will not allow me to go on like this. I've begun the process of sending MRI films and medical records to Pittsburg and hope to be an acceptable candidate for MVD, all of the research i've done indicates that it is the best there is so far. As this process continues i will update. There is so little known here locally that i feel like i'm paying the doc's to educate them about this bleeping thing. If anyone would like to correspond please do.
Tim Stuver <jtstuver@aol.com>
Niles, MI USA - Friday, December 01, 2000 at 14:06:11 (PST)

IF YOU NEED PAIN MEDICATION WITHOUT A PRESCRIPTION, VISIT HTTP://WWW.BANDWEB.NET/GETPILLS LONG LIST OF WEBSITES THAT CAN DO THIS FOR YOU. NO DOCTOR NEEDED.
GetPills <getpills@hotmail.com>
USA - Friday, December 01, 2000 at 09:20:43 (PST)

I am a 53-year old female. I have been dealing with Trigeminal Neuralgia for years. I have found a few things that help: -A hot shower helps calm the nerves. -I purchased magnets from an Amway salesperson. There are three which can be placed at pain locations. I can feel the nerves trying to spasm but the magnet keeps them calm. -I was allergic to Tegretol but my doctor and allergist conferred and I take .2 mg of Tegretol by injection every 5 days. The Tegretol really helps. -I sleep with a pillow covering the left side of my face & across the top of my head. I DO NOT recommend MVD. I understand that it has helped many but I had MVD in 1995 and suffered a stroke. I finally had to retire from a job I loved. A stroke scrambles your brain!!! I also have been diagnosed with Fibromyalgia. I take 80 mg of Elavil & 180 mg of Verapamil at night and 150 mg of Effexor XR. These medications help relieve the Fibromyalgia pain and help "pad" the TR pain. Maybe this information will answer some questions. I certainly hope they will someday find an answer for all of us. I was so glad to find this site.
D. Powell <DPowell806@aol.com>
Levelland, TX USA - Wednesday, November 29, 2000 at 22:26:47 (PST)

I have been dealing with Trigeminal Neuralgia for years. I have found a few things that help: -A hot shower helps calm the nerves. -I purchased magnets from an Amway salesperson. There are three which can be placed at pain locations. They help keep the nerves from flickering with pain. -I was allergic to Tegretol but my doctor and allergist conferred and I take .2 mg of Tegretol by injection every 5 days. The Tegretol really helps. -I sleep with a pillow covering the left side of my face & across the top of my head. I DO NOT recommend MVD. I understand that it has helped many but I had MVD in 1995 and suffered a stroke. I finally had to retire from a job I loved. A stroke scrambles your brain!!! I also have been diagnosed with Fibromyalgia. I take 80 mg of Elavil & 180 mg of Verapamil at night and 150 mg of Effexor XR. These medications help relieve the Fibromyalgia pain and help "pad" the TR pain. Another sufferer
D. Powell <DPowell806@aol.com>
Levelland, TX USA - Wednesday, November 29, 2000 at 22:21:36 (PST)

I have been dealing with Trigeminal Neuralgia for years. I have found a few things that help: -A hot shower helps calm the nerves. -I purchased magnets from an Amway salesperson. There are three which can be placed at pain locations. They help keep the nerves from flickering with pain. -I was allergic to Tegretol but my doctor and allergist conferred and I take .2 mg of Tegretol by injection every 5 days. The Tegretol really helps. -I sleep with a pillow covering the left side of my face & across the top of my head. I DO NOT recommend MVD. I understand that it has helped many but I had MVD in 1995 and suffered a stroke. I finally had to retire from a job I loved. A stroke scrambles your brain!!! Best wishes! Another sufferer
D. Powell <DPowell806@aol.com>
Levelland, TX USA - Wednesday, November 29, 2000 at 21:45:59 (PST)

I need to consult a hypnotist to help in a personal matter that is destroying my life. I had an affair with a co-worker who was also my asst. managers brother and my brother best friend I can't seem to let go of the situation it is consumming my life and destroying my marriage. I do love my husband very much and I want to work things out, but I know that I can;t do it on my own. PLEASE PLEASE PLEASE can you HELP!!!Vivian Franks
Vivian Franks <franksvivian@hotmail.com>
Lemon Grove, CA USA - Wednesday, November 29, 2000 at 09:36:24 (PST)

Recently diagnosed and put on neurontin. Meds do work but have me less alert. Meds are affecting work and my driving.Any suggestions welcome.
Steve Richey <steverichey@hotmail.com>
dublin, ca USA - Tuesday, November 28, 2000 at 23:12:00 (PST)

Even though I am on neurontin and baclofen,I have pain,this month its my tooth,hurts for me too touch and open wide. I guess we just keep taking pills and hoping they will come up with something soon for all of us.
Joan Larkin <JoanLrk.@aol.com>
USA - Sunday, November 26, 2000 at 19:46:13 (PST)

Hello and Happy Holidays to all out there. I know it is very difficult to celebrate while being in so much pain. I want everyone to know that I did email NIghtline and they said that thier viewers would not be interested in hearing about our problem, the viewers wanted to here about the election, well I think I know of quite a few people who would like to hear a little more about the TN as far aa I am concerned, the elcetion news can go on hold for one hour dont you think? Any way this goes out to the young woman who said that she is to young to have TN as what her doctors have told her, well I am 29 yrs old and I have it, so you are not to young and dont let them tell you that you are, you need to be treated. Let em tell you what I am presentely taking to treat this TN 800 tegretol a day, 900 neurontin a day and 40 of oxycnotin a day. Talk about memory loss, I cant remember things that happened 2 minutes ago let alone yesterday or last week. I got in trouble last week b/c I forget to tell people aobut the staff changes and they hire peole for the day and then not need them, I understand and was sorry but i just cant remember what peoloe tell me so now i need to walk around with pen and paer all day so that i do remember, never had to do this before and now I do, hate it. My Pain has been getting somewhat worse over the past few days but i think that is b/c of thecold weather that we are having. Has anyone noticed that the cold weathermaeks it worse. even when you are in the house?? Has anyone come up with ways to keep your memory intact besides pen and paper? Let me know. Again feel free to email me at any time. TRY TO STAY PAIN FREE EVEN JUST A LITTLE BIT. Lisa
Lisa <LisaE0608@aol.com>
phila, pa USA - Saturday, November 25, 2000 at 07:49:27 (PST)

..i have TR since my early 30's,ihad surgery a year before and i often ask my self if that had something to do with it ...i went to a university and no help, i went to a neuro- surgeon and he said no surgery until i could not stant the pain any more i am on 1200 neuronton a day, i get zipped on my tounge and get bad headaches and i get angry... ..my TR is periodic,and i find less stressful things help me i dont like TV the noise upsets me a lot, if anyone wants to e- mail me that be nice,have a good Day and God Bless!! Anna
anna riddle <kater@sinclair.net>
wa USA - Thursday, November 23, 2000 at 16:02:04 (PST)

I began with a severe toothache 9 years ago. Went to dentist and teeth were fine. Have tried medications-all kinds, accupuncture, relaxation therapy, gone through 8 doctors,etc. My pain is in my lower jaw(front of chin) and goes into my tooth(left middle bottom) and gum beneath that tooth. Anyone with these symptoms please contact me. I am a grade one teacher in northern NY. I am so tired of this pain each day. Good luck to all with their discomforts. I have never been diagnosed-just told I have a facial neuralgia of some kind. Also have a history of Lyme disease .
Cyndi Hanley <chanley@slic.com>
NY USA - Thursday, November 23, 2000 at 07:55:40 (PST)

Hello, Im a 15 year old female, who has Trigeminal Neuralgia, I've had it for a year now. In two weeks im going for microvascular decompression. I was wondering if anyone else has had it done, and if you could tell me how you felt right after surgery? thank you Tahi M
Tahi Mulla <tahi123@yahoo.com>
Toronto, Canada - Monday, November 20, 2000 at 19:03:54 (PST)

I have had T.N. since 1993 when I had a wisdom tooth extraction. I have been on different meds and have had 3 radiofrequency surgeries. They worked and lasted for several months each time. Then the pain came back. I have been using 2 supplements for the last 6 weeks which I believe are helping. I have been getting only 1-4 jabs daily and somedays none. I would like to help others to get better too. Please feel welcome to email me and I will go into more detail and answer any questions. Sincerely, Jim
Jim Fowler <fowler1182@home.com>
Oshawa, ON CAN - Monday, November 20, 2000 at 18:05:50 (PST)

I am 30 and have had TN since I was 16, it took 5 years to be diagnosed. I have been on Tegretol since I was 21, off and on plus one attack of Hepatitis. I would like to have surgery but I must admit, I'm chicken. Is there anyone that has had surgery that can tell me how it went and how you're doing now. I would appreciate pros and cons, my family practitioner keeps telling me to "wait, they're still doing reasearch, they could have a cure in 5 years". Yes, and in the meantime, I'm the one in unbearable pain, not him. Thank you, and my heart goes out to all who are in pain.
Mattie <mmmoon@kenwoodpc.com>
Houston, USA - Monday, November 20, 2000 at 14:57:44 (PST)

I've been keeping a symptom diary for about 6 years. I finally was diagnosed with not only TN but also multiple sclerosis. My neurologist and material I've read say this isn't a rare combination. My trigeminal nerves may be damaged with "plaques" or scars from inflamation accompanying MS exacerbations. Am I alone with this double whammy? She says I'm not but I've never found anyone else dealing with this. Also, I've seen a correlation with my hormone cycle (I'm now peri-menopausal). Have any other women with TN seen a PMS or "hot flash" association with atypical TN attacks? I'm currently on hormone therapy to try to stabilize the fluctuations. Even considering hystorectomy. It seems to be helping somewhat. Also taking all the TN/MS symptom drugs--tegretol, neurontin, elavil, baclofen, and esgic plus or toradol when needed for severe attack pain (my episodes last 12 to 36 hours). I also often develope excruciating leg neuralgia with attacks. I hope someone out there who's experienced similar problems will respond on this site. I'll be looking for a friend.
Mary Langford
MS USA - Monday, November 20, 2000 at 00:19:37 (PST)

I have a hemi facial spasm and in a bout of self pity found this site. What I found here is more amazing than sympathy and understanding instead of wallowing in self pity I find that after reading this site I am truly fortunate that my face only jumps and is just a humiliation. My heart goes out to all of those who were compelled by pain and agony of TN to visit this site...I can only feel appreciative to the good lord that to me he was merciful and I pray that he heal s each and every one here. I pray that he keeps you and sustains you through this personal battle that only each of you can fight on your own or with those that love you.
Mrs. Rentas <LadyRentas@yahoo.com>
Tx USA - Sunday, November 19, 2000 at 15:13:41 (PST)

I'm interested in the number of cases that seeem to have a dental procedure which initiated the condition. In my case, TN occurred a few weeks after replacement of 2 fillings. The teeth then became the trigger point following exposure to hot/cold food, or to pressure. It appears to have undergone almost complete remission after I was placed on Neuriontin a week ago. It appears from the literature that a toothe procedure isn't really described as a likely initiating cause. I find this somewhat surprising, or perhaps it hasn't been fully investigated. My feeling is that the nerve has in some way been irritated which eventually triggers hyperesponsiveness. Any comments or ideas?
marco <marco@moon.ovi.ac.za>
USA - Thursday, November 16, 2000 at 08:46:29 (PST)

I also had my first TN attack a month after an extensive root-canal treatment on my front left-side. The pain was so unbearable, I sought treatment at a specialist dental clinic but the dentist referred me to a GP who diagnosed it TN and prescribed Carbamazepine which helped a lot to reduce the pain which continued on and off. I was then on holiday in Oz.Back home in Singapore I consulted a Govt neurologist who sent me for several nerve tests and MRI. The results stated that my basilar artery at the back of my brain was enlarged and tortuous and was next to my 5th nerve laterally.The neurologist concluded that this was the cause of my TN i.e. whenever my basilar strtched due to my hypertension, the attack woulod come on. She flatly refused to believe that my root-canal treatment had anything to do with my TN. I had since been told that here in Singapore that had been a case of a TN patient who sued his dentist for giving hin TN after a root-canal treatment but failed in the suit. I am now on 600 mg carbamazepine daily annd the attacks come once a while and relieves the pain considerably. I wish some research could be done by dental/neurology experts to see whether deep root-canal treatment could be a cause!!!!
mike chan <adam_cym@yahoo.com>
USA - Thursday, November 16, 2000 at 00:39:59 (PST)

Here I am at 4 am, fighting the pain. The doctor said he would diagnose that i have TN, except that I "am not old enough" (I am 45). I have been to dentist, i have been to optpmetrist (at first they thought i had temporal arteritis - except I am "not old enough" for that either), I am going to the cranial osteopath tomorrow. I have been in constant pain since sudden onset of what felt like toothache, with no more than 2 minutes of remission since it began. No pain killers work, even those that are 'prescription only, and they are trying me on equivalent of Tegretol, I think - Diazepam, 2 mg, with no effect, also on Doxycycline in case it is "chronic sinusitis" (I don't believe it can be) in any case, nothing has worked yet. I have been trying something i read about on another web site - ice cold water - which gives searing pain then a few moments of relief. I am getting desperate. I have a special needs child to look after who doesn't sleep, so i am used to getting just 3 hours average sleep per night, but every time i move in my sleep i wake up. Do they do MVD over in England? I have also read that getting constant pain means i have 'atypical TN' and that MVD doesn't work for that. Anyone know for sure? Help. My thoughts are with all of you in pain right now. I am trying to imagine building barriers like giant dams between me and the pain and it does seem to work a little. Anyone else got a good visualisation ("warm seas" make no difference to this pain!) Love to all fellow sufferers Caroline
Caroline
Epsom, England - Wednesday, November 15, 2000 at 22:25:24 (PST)

Wow, this sight had helped me see, no I am not alone!! I have just been diagnosed with TN. All this is very new and scary to me. No one I know has any idea what I am going thru. My poor children are suffering almost as much as me. The people I work with either think I am faking these so called "headaches". I thought my life had it's difficult moments before?! Wow am I in for a surprise. Anyways, I have not started any treatment as of yet (my gp has put me on 10 mgs of amitriptyline to help me sleep, but it doesn't ) because we only have one neurologist here that deals with TN. So I'll know more in December. But this page has really helped me understand what it is I am dealing with. Thank you!! p.s. If anyone knows of any groups in Ontario (Canada) could you please let me know =) God Bless!!
Jennifer McGowan <jmcgowan35@home.com>
Burlington, ON Canada - Wednesday, November 15, 2000 at 20:10:43 (PST)

I just finished reading many of the guest book entries and I am absolutely dismayed and astonished that so many TN sufferers are not getting adequate medical attention that they so deserve! If your doctor tells you that there is nothing they can do or he does not feel comfortable performing the different procedures, by all means go to another doctor until you find someone who will help you. There are many good doctors and facilities that can help. Don't give up. Keep searching. If you are just beginning your search, start by reading the TN Handbook. This will allow you to educate yourself on this hellish condition and give you the information required to explore different alternatives. I am a 39 year old wife and mother of 3 who lived with this horrid condition for 2 years. During that time, my life became more and more consumed with pain until I finally had the MVD surgery. I have been pain free ever since. When I went through this a few years ago, there were no web sites, no books and no support groups. Thank goodness we have these tools now. For those in pain now, I implore you and your loved ones to read as much as you can on this condition, educate yourselves and find the best doctor you can to help explore different alternatives for you care. I understand that the MVD surgery is not for everyone, but it sure turned out to be a miracle for me.
Kay
Preston, WA USA - Wednesday, November 15, 2000 at 17:33:22 (PST)

TN has dominated my life for almost 3 years. I am on 2400 to 3000 mg. of Neurontin a day and am unable to work as an RN. I am ready to have Microvascular Decompression (MVD). I am in the process of finding the best surgeon in the country at a clinic that performs this surgery every day. This option to go outside my healthcare insurance network may be available to me because there are no surgeons in Arkansas that perform the surgery enough to be proficient in it. I have to find the best surgeon and clinic/hospital first, then apply with my insurance company and ask for approval. I have been told that my chances are VERY GOOD. Please let me know If you have any information or know anyone who would have information about: Best Practice Neurosurgery clinics and surgeons who specialize in treating Trigeminal Neuralgia and performing Microvascular Decompression surgery. A Christian Surgeon is preferred! I am letting go of my impulse to be proud and silent in the hopes that putting the word out will help me find the best surgeon and clinic/hospital possible. Feel free to pass the word along to anyone that you think might have information. I am scouring the Internet but as you know there is so much info there that I am a little overwhelmed. Shannon blaylockh@juno.com
shannon blaylock <blaylockh@juno.com>
AR USA - Wednesday, November 08, 2000 at 10:46:11 (PST)

your web page is fine and I encourage you to keep up the good work.May God Bless you always.
Louise Butler <butler54@hotmail.com>
Halifax, N.S. Canada - Sunday, November 05, 2000 at 12:17:05 (PST)

My wife suffered from TN for the past 17 years. Finally when none of the medication was answering, the doctors decided to go for MVD. The surgery was done 3 weeks ago. She is completely cured as far as the pain is concerned (except for a slight numbness on the side of the face where the pain was). I appreciate all the support and encouragement provided by this site to get over this dreaded disease.
Wicks Malaviarachchi <wicksm@usa.net>
Las Vegas, USA - Saturday, November 04, 2000 at 21:51:50 (PST)

Another visit to MGH I was told to up my neurontin and wait it out about another week and I should start feeling relief.Meanwhile the med.makes me tired and I am afraid to drive. My dr. claims the change of season,dust,mold,etc. help cause these problems for people with TN.It hurts for me touching my scalp or face,drink fluids and bending foward. Hope everyone is finding better help if so let me in on it.
Joan Larkin <JoanLrk@aol.com>
Ma. USA - Friday, November 03, 2000 at 12:22:26 (PST)

Another visit to MGH I was told to up my neurontin and wait it out about another week and I should start feeling relief.Meanwhile the med.makes me tired and I am afraid to drive. My dr. claims the change of season,dust,mold,etc. help cause these problems for people with TN.It hurts for me touching my scalp or face,drink fluids and bending foward. Hope everyone is finding better help if so let me in on it.
Joan Larkin <JoanLrk@aol.com>
Ma. USA - Friday, November 03, 2000 at 12:22:15 (PST)

Hi I'm Jean my mother is the sufferer she too started out in the dentist office having her teeth pulled, she started suffering tn in 1994 & had mircovascular surgery and almost died on the table she was in intensive care for 5 days. She got tn on the other side and found a wonderful surgoen & had gamma knife surgery at Columbia Presbyterian Medical Center that was much easier for her,but she only has had a year in remission She's taking nuerontin. but she has trouble eating talking brushing teeth its so sad She is such a strong lady she never complains but I know how much she is suffering Going outside on a windy day is horrible for her its so debilitating She is a wonderful mother who is still taking care of young kids, mine since my divorce I live with my mom and she is there for all of us cooking cleaning driving the kids just like a young mom God Bless her she turned 70 this year and can still keep up with my kids She never complains she just stays quite and I know she's suffering ,What a terrible thing to see the one you love in so much pain But never having it I can only imagine what its like I pray for a cure for all of you especially sad to hear about young children We belong to a support group in Chester NJ that meets 4 x a yr.
Jean Stack <butterflies333@earthlink.net>
Newton, NJ USA - Wednesday, November 01, 2000 at 19:57:28 (PST)

Dear Dr. Janetta I researched your book "The Medical and Surgical Management of Trigeminal Neuralgia" when I was in graduate school. I did my master's thesis on trigeminal neuralgia, which was very interesting. I also interviewed Dr. Fromm (from the University 0f Pittsburgh)and learned a great deal. I am an experienced medical illustrator seeking free-lance clients and contacts. If you would like to view my work, or ever need a medical illustrator please contact me at: (724)224-0488 address:323 East 11th Ave., Tarentum, PA 15084. Thank you and have a good day. Sincerely: Brian D. McDermott, MFA
Brian McDermott
Tarentum, PA USA - Wednesday, November 01, 2000 at 15:11:52 (PST)

I HAVE HAD SERVE PAINS IN THE BACK OF MY HEAD SINCE I WAS VERY SMALL. THE PAIN IS LIKE LIGHTING,ELECTRIC SHOCK GOING UP THE BACK OF MY HEAD. IT DOES NOT COME A T CERTAIN TIMES OF THE YEAR OR ANY PATTERN I HAVE KEPT LOGS FOR YEARS. IT IS SO PAINFUL I HAVE TO STOP DRIVING OR WHAT EVER I AM DOING AND I BLACK OUT FOR A FEW SECONDS.THE BACK OF MY HEAD IS SORE AND FEELS LIKE IT IS SWOLLEN FOR DAYS AFTER THE ATTACK'S iN 1999 I WENT TO CLEVELAND CLINIC AND THEY SAID I HAD NEURAGIA. I HAVE BEEN ON ALL KINDS OF MEDICATIONS. AND PRETTY MUCH HATE THEM ALL.TO MANY SIDE EFFECTS AND REALLY NOT SURE THAT THEY WORK!! ANY SUGGESTIONBS WOULD BE GREAT I HAVE LEARNED TO LIVE WITH IT AND HOPE IT DOESNT STRIKE AT TIMES WHEN I OR SOMEONE ELSE COULD GET HURT. PLEASE EAMIL ANY SUGGESTIONS OR COMMENTS THANK YOU, DEBRA
DEBRA <DPURSEL@WCNET.ORG>
OH USA - Sunday, October 29, 2000 at 19:02:56 (PST)

my psych started me out on 1200 mg per day to prevent seizures from cold turkying alcohol. In 3 days, I couldn't walk (had to crawl from the living room to the bed room) so I quit the tegretol. anybody else had this?
Jon in Dallas <pdfulton@swbell.net>
Dallas, TX USA - Sunday, October 29, 2000 at 17:16:24 (PST)

Hi, I am currently 16 weeks pregnant and have had morning sickness since the 6th week. I am currently taking Zofran which is an anti-emetic and it is just kind of maintaining things. I have recently visited an accupunturist and he informs me that there are certain hormones in your system during pregnancy that can make your gallbladder sluggish and he insists that this is what the problem is. Does anyone have any advise on this and also do you see that he can help me?? I had a gallbladder Ultrasound done but that did not show any stone or inflammation. Please, somebody let me know which end is UP!!!!
Kerry Baker
USA - Sunday, October 29, 2000 at 09:54:11 (PST)

Husband was diagnosed with trigeminal neuralgia in 1999 although he showed symptoms since I met him in 1993. Pain has gotten progressively worse. Diagnosed by MRI. Dislikes the medication and takes it only on sporadic basis. Pain is frequently preceded by stuttering and during episodes, he seems to be completely debilitated. Thankfully they only last between thirty seconds and a minute, however, they have gone on so longer and once I seriously contemplated calling 911. Since he becomes debilitated during episodes, we try to avoid having him drive alone, as the episodes hit with no warning and we worry he may cause a wreck. More than once I have had to grab the wheel. Anyone else have experiences like this?? It is hard to believe that something that is so intense is "completely benign". Responses are appreciated.
Jo <ccimage@ispchannel.com>
NC USA - Friday, October 27, 2000 at 21:20:22 (PDT)

my husband is addicted to vicodin...he takes at least 10 of the 750 mg a day help
patsy <grasshopper@citlink.net>
elk grove, ca USA - Friday, October 27, 2000 at 19:50:14 (PDT)

I had a dental implant a month ago and now have TN. Am on tegretol and Ultram. The pain is sometimes unbearable and it is hard to work while on the medication. The doctors act like it "just happened", didn't the procedure cause this to happen? I feel sorry for anyone who endures this type of pain, it is so hard to deal with.
ELN <eln14@aol.com>
USA - Friday, October 27, 2000 at 00:07:27 (PDT)

I am on Neurotin and baclofen,no help, pain is with me aboutl5 hrs. of everyday since last Monday.When I feel great I eat,otherwise I become very weak.Has anyone had some kind of operation and are you glad you did. I need to know, because I am heading in that direction.
Joan Larkin <JoanLrk@aol.com>
Ma., USA - Wednesday, October 25, 2000 at 15:43:06 (PDT)

As a medical student in an Orthopaedics rotation at Duke University Medica Center, as well as a former intern at a Physical Therapist's office, I can assure you that Craniosacral therapy, as well as other forms of myofascial release, does work, but I am at a loss to explain why. Even more interesting is the range of psychological response that such treatment often illicts, I have seen a great many patients come off the table crying and not knowing why, as well as sudden changes in demeanor that are inexplicable. I suspect that changing pressures in the cerebralspinal fluid and perithecum is the cause, although there is insufficient research to prove this. As we continue to research this treatment, answers should come, but for now, don't hesitate to use it. Brandon Craven M.D. III DUMA
Brandon Craven
Durham , NC USA - Tuesday, October 24, 2000 at 17:11:41 (PDT)

Hi, I am a 40 year old female. I was diagnosed with TN in May, 2000. I tried Neurontin (900 mg/day) with not great results, and I hated the sleepiness it caused. I have a friend who is a massage therapist..she suggested she try a technique called "Craniosacral Therapy" on me. Within 48 hours, the TN was almost completely gone. My neurologist is baffled and my chiropracter wants her number. It has been 10 weeks since my 2 treatments with this massage therapist and I have only had very minor "twinges" in my jaw, whereas even on the Neurontin, the pain was moderate to severe. I would strongly encourage all TN patients to seek out a practitioner of Craniosacral Therapy. It is non invasive, non medical and has made an incredible difference in my life. Feel free to email...Jan (BdinAlbq@aol.com)
Jan <bdinalbq@aol.com>
nm USA - Tuesday, October 24, 2000 at 16:34:49 (PDT)

I've had TN for 2 1/2 months - it started 2 days after I had 2 fillings and like everyone else I blamed the dentist - after going back several times and having it blamed on grinding my teeth - the Dr told me it was TN & gave me 2 x 100mg carbamazapine (tegretol brought me out in a complete rash). I find ibubrufen (400mg) help take the edge of the pain - I've tried to describe it to people, it sometimes affects the left or right side & at worst affects both sides together. Sometimes the pain feels as if my eardrums are going to explode, other times my teeth are so painful I can hardly close my mouth & I can't even touch them. Other times I feel as if Mike Tyson has taken a swing for my jaw. People at work have told me that my face swells when I am in pain. I have it constantly for 1 week, then it seems to clear for a few days before rearing up. From reading your messages - it seems that I'm one of the lucky ones and you have all my sympathies ... cause at it's worst - I feel as if I could just die!! Don't like the thought of any more medication or surgery - and I was told it would last about 6 months - but from the rest of you - this seems to be a myth - anyway - keep the faith!!!
mandy
Belfast, N Ireland - Tuesday, October 24, 2000 at 16:33:42 (PDT)

I've had TN for 2 1/2 months - it started 2 days after I had 2 fillings and like everyone else I blamed the dentist - after going back several times and having it blamed on grinding my teeth - the Dr told me it was TN & gave me 2 x 100mg carbamazapine (tegretol brought me out in a complete rash). I find ibubrufen (400mg) help take the edge of the pain - I've tried to describe it to people, it sometimes affects the left or right side & at worst affects both sides together. Sometimes the pain feels as if my eardrums are going to explode, other times my teeth are so painful I can hardly close my mouth & I can't even touch them. Other times I feel as if Mike Tyson has taken a swing for my jaw. People at work have told me that my face swells when I am in pain. I have it constantly for 1 week, then it seems to clear for a few days before rearing up. From reading your messages - it seems that I'm one of the lucky ones and you have all my sympathies ... cause at it's worst - I feel as if I could just die!! Don't like the thought of any more medication or surgery - and I was told it would last about 6 months - but from the rest of you - this seems to be a myth - anyway - keep the faith!!!
mandy
Ireland, USA - Tuesday, October 24, 2000 at 16:32:10 (PDT)

Thank you for this wonderful website. Prior to now, I just thought this was some affliction that only my mom had. Your comments and postings have really breathed life into this disease and I have a better understanding of my mothers suffering. Currently, she is in the hospital, having a really bad bout. She is scheduled to see a neurosurgeon today to determine her next surgery. This will be her 2nd. I am terrified about this surgery. Im afraid I will never see my mom again. She is in Ohio and I in California. I feel like I should be doing something, but there is nothing I can do for her, here, or there. She is on Tegritol, and it is not working any longer. She has been fainting, can't eat, has low heart rate and low blood pressure. I am scared!!!! My mom is 71 years old. If any of you have any hope, please email me. I will find out what surgery she is having, and let you all know.
Karyl Ann Hancock <rhancock@socal.rr.com>
Westminster, Ca USA - Tuesday, October 24, 2000 at 07:30:01 (PDT)

Having suffered from TN down the right side of the face for 5 years, it seemed that drugs no longer worked. In the end facial surgery was the only option. In June this year I had Radio Frequency Thermal Coagulation operation in Hull. Initial results have seemed excellent, with only a slight numbness around the right of the mouth. After waking up from he anaesthetic, all pain had gone. Not bad after having suffered in such a bad way for 5 years. I just hope that the pain stays away.
Simon Gregson <sgregson@totalise.co.uk>
Gilberdyke, Yorkshire, England - Monday, October 23, 2000 at 03:50:10 (PDT)

My mother woke up one day with half of her face (left part) being numb. When she talks, smiles, eats etc. the left part of her face won't move with the derest of her face. She's also complaining that her right eye is hurting considerably. We went to the doctor, according to him. It's because my mother's right eye was too dry as it infected her nerves at the back of her head and the left part of her face. He only gave her some regular eye-drops and said that it will recover after 6 months. I was wondering whether there is another affective way to cure my mother? Or maybe other persons who went through the same thing? Pls. mail me. Wish you all a healthy live!
Ieling <ieling@yahoo.com>
- Sunday, October 22, 2000 at 11:08:10 (PDT)

My mother woke up one day with half of her face (left part) being numb. When she talks, smiles, eats etc. the left part of her face won't move with the derest of her face. She's also complaining that her right eye is hurting considerably. We went to the doctor, according to him. It's because my mother's right eye was too dry as it infected her nerves at the back of her head and the left part of her face. He only gave her some regular eye-drops and said that it will recover within 6 months. I was wondering whether there is another affective way to cure my mother? Or maybe other persons who went through the same thing? Pls. mail me. Wish you all a healthy live!
Ieling <ieling@yahoo.com>
- Sunday, October 22, 2000 at 11:06:56 (PDT)

My mother woke up one day with half of her face (left part) being numb. When she talks, smiles, eats etc. the left part of her face won't move with the derest. She's also complaining that her right eye is hurting considerably. We went to the doctor, according to him. It's because my mother's right eye was too dry as it infected her nerves at the back of her head and the left part of her face. He only gave her some regular eye-drops and said that it will recover within 6 months. I was wondering whether there is another affective way to cure my mother? Or maybe other persons who went through the same thing? Pls. mail me. Wish you all a healthy live!
Ieling <ieling@yahoo.com>
- Sunday, October 22, 2000 at 11:05:03 (PDT)

I've been reading through you pages on a regular basis and just want to wish you all good health and lets hope one day there will be a breakthrough in the treatment. Best wishes.
joy <rozzie50@goplay.com>
USA - Friday, October 20, 2000 at 01:39:08 (PDT)

Have been taken doxepin for 3 months now. Before had such terrible headaches that would last for 2-3 days. Had them 3-4 time weekly. Do not have them like that anymore, since doxepin. Is it a weight gaining drug?
Ethel Tomlinson <CTomlinson2>
Bullhead City. Az., USA - Thursday, October 19, 2000 at 13:24:19 (PDT)

I've got ATN. I'm up to 4900 mg of Neurontin a day & still have bleed through pain. I haven't worked or driven in almost 2 years. My neurologist sent me to a neurosurgeon who recommends that I have the Gamma Knife procedure. He sat down & talked about it with me & my family for over an hour. I especially like him. I told him that I would consider it. I have searched the Internet & still can only find rave reviews from doctors, but (aside from yours) can't find any patient's claims. I have scheduled the surgery for Dec. 8. Due to medication, my short term memory is like swiss cheese & my coordination/response time is to be desired. I've gotten "in tears" lost in JC Penney & have wrecked our golf cart 3 times! When I have a spell of days where there is no bleed through pain & I'm not as whacky, I think that I should be working. But about the time that I think that, I get slammed. It's like delivering a child -- the pain is unbearable & you swear that if you ever get through it that you will never get pregnant again. However, once we're out of it, it seems our minds cannot conceive a pain that's so unbearable. I understand why women must bear the brunt of Eve's sin, but I plan to question this TN thing! Maybe we'll see the big picture once we've crossed those pearly gates. I try not to complain, because I know that I'm blessed. I have a very supportive family, great insurance coverage (so far), & my faith. I try real hard to catch everything up on my good days. I try real hard not to complain. But boy does it hurt & the future is so scary! I'm scared of possible side effects from the Gamma Knife. I'm even scared of the success of the surgery. Pretty dumb huh? Well, I'd been a programmer analyst for years before getting sick. The way that technology changes so much, I have no idea how far behind that I'll be. I also know how hard it will be for a 40 year old woman with a medical history to find a new job. However, I also know that everything happens for a reason & that the Lord is watching over us. Thanks for creating a site such as this & hanks to all that leave enteries in the guest book. I'll let you know how the surgery goes. I plan to post my results all over the Internet; So that others can find what a patient has to say. Until then, be pain free. ~~ Sherry
Sherry <ourporch@aol.com>
Augusta, GA USA - Thursday, October 19, 2000 at 08:18:44 (PDT)

Dear Fellow TN (Trigeminal Nuisance) Sufferers; My name is Michele. I'm a 34 year old business owner. The first few day of Oct '99 I had the beginning stages of TN. By Oct. 8th, the pain was so bad I went on Tegritol. Well, one week of Tegritol and I just couldn't function in the workplace, let-alone drive a vehile. So, I stopped taking the medication and just suffered all the way through January 2000 by loading up on tons and tons of Motrin. By Feb. 1st, 2000 I was pain free and Motrin free. I had a good spring and great summer and then...in August 2000...here it goes again. At first it was only a few twinges as I washed my face. I immediately ran to a wonderful Chiropractor (Dr. Thea Lewis) in Dearborn, Michigan. Oh, she really really helped me for about a month. Then, unfortuantley for me, Dr. Lewis went away for a weekend. That was, of course, the weekend TN decided to have a jolting party in my face like never before. Let me describe to you that last year, my biggest complaint was a 45 second episode - that felt like 45 minutes. At this time I have returned to Tegritol (actually it's Cabatrol and Nurontin) and my every evening episodes are lasting --- ARE YOU READY FOR THIS??? 1 Hour and 45 Minutes with no stopping. I am at my wits end. I'm scheduled for an MRI on Oct 26th (they can't seem to make this a priority) and then after we will discuss sending me from Detroit to the Cleveland Clinic for surgery. They haven't told me what kind of surgery...but I wouldn't care if they said they'd have to remove my right arm and my left leg - with a spoon. JUST PLEASE GOD make it stop. I'm very scared. Not about the surgery...about the fact that many of you write that it's for the most part not curable. Is that true? I've watched the look on the Neurologist's Face (as HE swelled with tears) watching me having an episode. His voice saying, "I'm so so so sorry." Oh please someone...Oh please God...I have hope...I have faith...now get US the CURE not the TREATMENT.
Michele <thatgerrl@aol.com>
Dearborn, MI USA - Wednesday, October 18, 2000 at 15:36:46 (PDT)

Dear Fellow TN(Trigeminal Nuisance) Sufferers; My name is Michele. I'm a 34 years old business owner. The first few day of Oct '99 I had the beginning stages of TN. By Oct. 8th, the pain was so bad I went on Tegritol. Well, one week of Tegritol and I just couldn't function in the workplace, let-alone drive a vehile. So, I stopped taking the medication and just suffered all the way through January 2000 by loading up on tons and tons of Motrin. By Feb. 1st, 2000 I was pain free and Motrin free. I had a good spring and great summer and then...in August 2000...here it goes again. At first it was only a few twinges as I washed my face. I immediately ran to a wonderful Chiropractor (Dr. Thea Lewis) in Dearborn, Michigan. Oh, she really really helped me for about a month. Then, unfortuantley for me, Dr. Lewis went away for a weekend. That was, of course, the weekend TN decided to have a jolting party in my face like never before. Let me describe to you that last year, my biggest complaint was a 45 second episode - that felt like 45 minutes. At this time I have returned to Tegritol (actually it's Cabatrol and Nurontin) and my every evening episodes are lasting --- ARE YOU READY FOR THIS??? 1 Hour and 45 Minutes with no stopping. I am at my wits end. I'm scheduled for an MRI on Oct 26th (they can't seem to make this a priority) and then after we will discuss sending me from Detroit to the Cleveland Clinic for surgery. They haven't told me what kind of surgery...but I wouldn't care if they said they'd have to remove my right arm and my left leg - with a spoon. JUST PLEASE GOD make it stop. I'm very scared. Not about the surgery...about the fact that many of you write that it's for the most part not curable. Is that true? I've watched the look on the Neurologist's Face (as HE swelled with tears) watching me having an episode. His voice saying, "I'm so so so sorry." Oh please someone...Oh please God...I have hope...I have faith...now get US the CURE not the TREATMENT.
Michele <thatgerrl@aol.com>
Dearborn, MI USA - Wednesday, October 18, 2000 at 15:30:27 (PDT)

im having a problem also
amanda peet
oxford, ms USA - Wednesday, October 18, 2000 at 12:17:44 (PDT)

I just finished a 'heartstiring' e-mail to DateLine. took me forever. i sent it, then sat there again,forever, then finally a screen came up that my transmission had failed!! i have to end now to get ready for my birthday lunch..55 today. when i get back, i'll try again. everybody try.. we've got to get national recognition!! that's the only way are going to get any help..funding or whatever. God be with you.And thank God for this site!!
Charlene <harleysmom3@yahoo.com>
SLC, UT USA - Tuesday, October 17, 2000 at 09:41:48 (PDT)

to the lady with the 9 yr.old from Roslindale,Ma. have you taken her to Mass. General Hospital, I think they specialize in TN.
JoanLarkin <JoanLrk@aol.com>
Ma. USA - Monday, October 16, 2000 at 10:23:04 (PDT)

Hi Everyone. Yes, I to heard back from 20/20. They must have sent all of our "No's" at the same time which means they now know about us. I agree with Charlene. We need to bombard them again and also try other sources. Dateline is on NBC. Let's try Oprah to. We can not give up. I am going to send more e-mails off right now and I think everyone who reads this should to. I am also having friends and relatives with access to the Net send off letters. This is going to work eventually. We just have to wear them down. Good luck to all of you and God bless.
Suzanne <drudge@home.com>
Brampton, ON Canada - Sunday, October 15, 2000 at 18:16:26 (PDT)

Thank you for creating a website so that I can know I'm not alone. I've had this disorder all of my life. Through the years, my pain has become more frequent. I'm trying to discover why it is becoming worse. Thanks for providing links to other valuable resources. God Bless and Go Bush!!
Tonya Thomas
FL USA - Sunday, October 15, 2000 at 14:11:26 (PDT)

i've just read about the response from 20/20. i also got it on my e-mail from Lisa. i don't know if anyone has, but if not, what about Dateline? how many shows do they do a week? 3 or 4 i think. they might be more receptive to our problem. but if we do this, i think we should flood them with e-mails and even snail mail. any ideas? we need help from somewhere. if a celeb. had this, you could bet it would be out in main stream. i'm sure most of us are willing to do what it takes. all we need to do is organize and do it!
charlene <harleysmom1@yahoo.com>
Salt Lake, Ut USA - Sunday, October 15, 2000 at 10:10:17 (PDT)

i have a 9yr. old daughter who has been on and off Tegratol since she was 2yrs old. we are now having her cored due to learning probles in school. I have just recently heard of a direct relationship between Tegratol and learning problems. Please, I would love to hear of others who have had this problem.
anna nappier
roslindale, Ma USA - Sunday, October 15, 2000 at 09:21:09 (PDT)

Nice to find your web-page. Also nice to know I'm not alone. Have been having trouble with my teeth for 2 years on one side. In January this year I had my first episode of severe pain. Went to Dr. He diagnosed tn., put me on tegretol and sent me to neurologist.Tn was verified by him and had mri and mra, no tumor and no ms, I am very grateful for that. He sent me to Neurosurgen, was told that surgery is a last resort if medication fails, because the pain most likely will come backi with time. Had another horrible episode in May. Dr. doubled tegretol and it did nothing. Went to emergency and they didn't know what to do with me. After 6 days of excruiting pain waiting for my hmo to tell me what to do next. My Dr. changed medicine to Neurotin (1200mg) and have been doing okay, some shocks to the face and pain in teeth still, but I can handle this, I just pray that I don't have another flareup. I pray for all of you and hope that they can find help for all of us. God Bless and take care.
Dori Crowley <mike81541@coxs-internet.com>
pineville, la USA - Saturday, October 14, 2000 at 21:44:52 (PDT)

Hello again, Just also wanted to say that I got a response from the 20/20 show and they feel that it is not a show for them to do. I think it would be great to do but then who I am but one of the many sufferers of this problem. I bet if they knew someone with this they would say what a great show it would be. I will keep trying and will email them again and again and maybe will we get a response. We can not give up on this and just keep trying to find new ways to get this out to people. I just alos wanted to say that just what I said would happen in my last note did happen and I cant get rid of the pain tiday, it is horrible and dont know what else to do. took percocet, tegretol, ultram nothing is working if this is this bad in the morning i am going to the hospital and i hope to get some relief. keep trying and dont give up. Lisa
lisa <lisae@aol.com>
USA - Saturday, October 14, 2000 at 20:09:44 (PDT)

I first signed this guestbook in early 1998 after my then 10 year old daughter, Amy, had microvascular decompression (MVD)on cranial nerves V,VII,IX,and X under Drs. Peter Jannetta and David Adelson at Children's Hospital of Pittsburgh. She was diagnosed as having Glossopharyngeal neuralgia which was extremely rare for a 10 year old child. She is now 12 and still in pain. Most recently she had surgery in Hendersonville, North Carolina to correct what was thought to be a posterior fossa (Chiari Malformation) of the brain stem area. This surgery was in December 1999 and did fix her problems, at least for a while. In August of this year her pains came back gradually and have since gotten progressively worse. Prior to her latest surgery she suffered for almost a year with chronic ear and facial pain and "passing out spells". This puzzled many doctors who for the most part said her problems were psychological. Sound familiar? She is not able to go to a public school due to the pain, so the school system has her homebound with a teacher coming to our house for a few hours a day. My wife is not able to work anymore because someone has to stay with Amy. We have been in touch with her doctors and we are all taking a wait and see approach. I don't know how much longer Amy can tolerate this pain, nor how much longer we can helplessly watch our daughter suffer. We are reluctant to put her through more surgery since so far, nothing has worked. We continue to hold our faith in GOD to heal her of this terrible "disease."
Charles May <Camay2959@aol.com>
Phenix City, AL. USA - Thursday, October 12, 2000 at 21:47:33 (PDT)

Hi Everyone, I hope you are all doing well. This past Tuesday marks eleven weeks since my MVD and I feel great!! No pain and no drugs. What a wonderful combination!!! I truly wish there was some way that we could get this out there. Like Rhonda, I to received a reply from 20/20 today and they "rejected" our story idea. We just have to keep trying. I am making this short tonight, but you are all in my prayers. God bless.
Suzanne <drudge@home.com>
Brampton, ON Canada - Thursday, October 12, 2000 at 19:34:46 (PDT)

Hello Everyone! Well for all of you who sent a letter to 20/20.....Well I did to and they said TN was not chosen as a segment on there show. Well then where and how are we to get this in the opened so that everyone knows about this horrible disease that has so much pain and for people that has no help or understand what they may have. As for me I still have some pain since my MVD in July. Its nothing compared to what it was. Well I hope This letter finds everyone pain free for atleast a day or there lifetime.....Take Care and God Bless
Rhonda <angel_35_63_99@hotmail.com>
Chambersburg, Pa USA - Thursday, October 12, 2000 at 16:54:58 (PDT)

I have just found out that I have TN. I am suppose to start Tegretal. I am very scared to take this drug. Has anyone used acupuncture as an alternative pain reliever?
Judy Loest <tjloest@hotmail.com>
USA - Thursday, October 12, 2000 at 10:12:32 (PDT)

I am so glad that I found this page. It is nice to know that I am not alone and that here are people that really understand what I am going through.
Cindy
owego, ny USA - Tuesday, October 10, 2000 at 12:42:26 (PDT)

Hi! My Name is Judy, I have facial Neuralgia for one year and a half, still not sure what this is I been to so many Dr's and so far one said I had a mild case of TN, another said I had myofacial, I think I have hemi facial, I hope by the time it reaches 2001 someone will get the right answer for me, my husband and I fight almost every week about this and he doesn't want me to have mvd operation, every dr I been to says not to that operation, why do they have that operation if about 12 specialist say don't do it, you can see I am very upset over all this I am going to be 50 and I still want to have a good life, see my daughter get married some day and some grandkids, thanks for listening.
Judy Ann Juliano <Judyj519@aol.com>
tarpon springs, fl USA - Monday, October 09, 2000 at 19:16:15 (PDT)

I have a family member diagnosed with fibro mialgia and I need to know where I can go on the net to get more info on this disease. Can anyone help me? Please advise.
Richard Means <mickeym@hcnews.com>
USA - Sunday, October 08, 2000 at 15:33:30 (PDT)

I was diagnosed yesterday in the ER with TN, I am taking Prednisone for the inflammation and Percocet for the pain. I have never experienced such a horrible feeling, it was like I was being stabbed all over the right side of my face. I was told that the diagnosis is in all three branches across my right side from the V Cranial Nerve. I'm pretty scared. I am 30 years old, I live a very stressful life could this be why I have TN? Is this long term? I'm searching for answers. Thank you
rene' <alluredesigns@webtv.net>
andover, KS USA - Sunday, October 08, 2000 at 14:26:33 (PDT)

My TN started 51/2 years ago. The pain was unbearable on one knew what was wrong. I went to the Dentist first as I thought it was my teeth. Then to eye-ear-thoat Drs. Med Doctors couldn't find anything wrong I had MRI, finally I went to c Chiropractor and he told me I had TN. I was put on Tegretol but couldn't take it. I finally got so bad I had to have surgery. I live in Ne. but I went to Dallas Tx to have my surgery as our kids live there. I have been pain free for 4 yrs but 2 months ago the pain started coming back. I will go back to Dallas at the end of this month to see what is going on. I can not take the medicine the us for TN so don't know if I will be having surgery again or not. Like to hear from you all.
Eilene Miles <gemiles@tcgcs.clm>
Hastings, Ne USA - Sunday, October 08, 2000 at 13:58:07 (PDT)

I must say that I am so sorry to see the number of people who have added to the guestbook since my last entry. Well right now I do not feel that bad, dont get me wrong, I have pain but it is tolerable but it feels as if it is getting to that horrible poing, you know how after it does not feel bad for a while and then it rears its ugly head and oh boy are you in for it. It almost feels as if it is a punishment for being somewhat pain free for a while. Well let me inform you of what has happened to me since my last note, I have had surgery to tie my tubes so that I can not get pregnant again this way i do not have to worry about the side effects of the meds. My birth control pills were no longer effecitve so I did something that I never wanted to do but it is done and I guess I am happy about the decision, cant take the risk of getting pregnant on these drugs. I feel ok still a little sore from the incisions but getting around just fine. I went to a different neurologist yesterday and was very happy to speak with him. He told me what I needed to do and to continue with the tegretol and increase the dosage every 3 days until I get to 800mg a day and then see what happens. i pray that will work. I did email Oprah and 20/20 a few times and no response as of yet but I will continue to try and reach someone, there are too many of us that suffer from this thing. the one thing that he did make very clear to me is that I do have TN I am not happy that I have the TN in any way shape or form but I am happy that I have a diagnosis of soemthing and I am not crazy. you know how they like to make you feel like you make things up. I pray for each and every one of you and hope that they find something that will fix this and take all of our pain away. As for any surgeries my neurologist did not seem to be fond of any of them sayiing that they cause more pain and numbness most times than they do good. Cobgratulations to those of you who have gotten relief with surgery. Feel free to write to me. I have met many wonderful people through this site and am very thankful to have found this site. Good luck. Lisa
lisa <lisae0608@aol.com>
phila, pa USA - Saturday, October 07, 2000 at 19:12:54 (PDT)

I was diagnosed with TN about 3 years ago and haven't had that big of a problem until now.I am having unbearable pain and almost ready to loose contol.I am scheduled to see an nuerologist 4 days from now but not sure if I can wait much longer.I am so glad God has sent me this web site.I have been to two MD this week and niether one seems to under stand the severity of may pain.Now, that I have a better idea of the drugs availiable I am calling in the morning.I can't wait another 4 days of this pain.Thank you all for this information.
Melinda <melindawhithe@prodigy.net>
jacksonville, FL USA - Saturday, October 07, 2000 at 01:19:13 (PDT)

Thanks to Debbie for this TN site. I really feel that I am not alone. I posted to this site several months ago. I had an MVD in April of this year after agonizing pain and many trials of so many meds. After recovering from surgery, I had a few months without pain. Pain has now returned and is increasing in intensity. I am really interested in hearing from others where their TN pain has returned after MVD. I may be looking at a repeat MVD. What meds or procedures have you tried after pain returns. I seem to be getting this response alot "this pain was not supposed to return after this surgery. I thought you were cured" I feel I am back to square one again. I'm trying to keep the faith and hang on to hope. Your comments would be most appreciated. Thanks
Brenda <csours@aol.com>
USA - Friday, October 06, 2000 at 18:46:07 (PDT)

I am adding this to my comments on Sep 26th. I've done a lot of research and read about capsicum ointment for neuralgia pain. It comes in .025% and .075% strengths. The .025% didn't help me, but I had my pharmasyst order the .075%. The name is Zostrix. As I said in my earlier comment, Ive taken every pain killer there is and none of them help my pain. I have been using the Zostrix capsicum ointment now for about 6 days, and it has really helped dull the pain. I read that it really takes up to three weeks to really work. What it does is block the neurotransmitters, and it takes a while to build up. I also read that they are doing studies on a stronger capsicum cream of 7% and 10%. They have also some up with an ingredient to add to the cream that will alleviate the burning of the skin that the cream causes when you apply it. I just wanted to pass this on in hopes that it may help someone else. I have two appointments with two different Neuroligists withing the next 5 weeks, so if I learn of anything new, I'll pass it on.
Ellen <eaipperspach@dcmdw.dcma.mil>
wichita, ks USA - Thursday, October 05, 2000 at 15:01:07 (PDT)

I had my first and only TN attack in 1996, but am now experiencing symptoms which I believe may lead to another attack. I'm seeing a nurse practitioner tomorrow, since the doc's not availaible till the 17th. I am taking a large amount of research material with me to leave with them, since few docs ever see a case in a lifetime of practice. I joined the TN Association and filled out my patient survey, and have volunteered to help them in any way I can. They have support groups around the country, but none in Oregon, so I want to start one in the Portland area. I am an RN, have a great deal of experience teaching, and want to help others who suffer from this horrible disorder. If you are interested in joining a support group in my area, please contact me. No one should be alone to fight this demon.
Barbara <bdjeepers@worldnet.at.net>
OR USA - Thursday, October 05, 2000 at 12:45:54 (PDT)

Hi! Don't really know what to say. Suffering from RSD and Lupus. Not a great combo. On Neurontin, Diclofenac, Amitriptyline, and Percocet, to help with pain and swelling. Feel miserble and sleep almost the whole day away. When I try to wake up early I feel as though I have been kicked in the head. The Neurontin makes me feel like I'm enroute to Mars...I accomplish next to nothing and occassionally suffer other side effects. The next treatment for my ever spreading RSD is to put a shunt in my back for five days so that the medication will hopefully block the pain cycle and give me some relief. I don't like this option but I need to get back to work as soon as possible. Lupus is only leaving me about ten more good years to earn and have children to support and save for their futures. Any comments would be appreciated on RSD, Lupus, or related topics. By the way, what is TN? Thanks for listening.
Kim <ladyk216@yahoo.com>
NH USA - Wednesday, October 04, 2000 at 13:41:13 (PDT)

Is there a mailing list, bulleten board or chat room for us?
Tina <tsorrells@h-s.com>
USA - Tuesday, October 03, 2000 at 09:26:37 (PDT)

Well, my story has not changed....It seems that I am 1 of the lucky 50 out of the 1,000,000 people that live here in this city that has TN. I got it first when I was 30. Now 8 years later after basically never really thinking too much about it, it reared its ugly head again. Very slowly at first. It was just a little twinge on my left side. Scared me to death. It was like and old friend I hated stopping back for a overdue chat. I tried to make like it wasn't happening but the little zings and shocks turned into big zings and it was time to see the Doc for some Tegretol. I basically prescribed it TO MYSELF as I let him make a misdiagnosis just to see if these guys had learned anything in 8 years. He guessed I had Bells Palsey or shingles and to watch for some type of rash. Right! I wasn't leaving without an Rx for the Teg. which he reluctanly gave me after I elaborated on my 8 years prior experience. It seemed that my Tn was progressing through different stages. Although my Teg was helping I was still breaking thru (WITH PAIN) at approx 900 -1100mg. He would up the dose and for a few days and I would be calm with minimal shocks but when they came somtimes they were bad. These electric shocks or dagger cramps are from my left ear thru the mid nerve to my front teeth and would be shocking, cramping and stabbing right into my left lower cheek along my jaw line...Yow-- Pain would feel like 3 or 4 root canals being done at once up top on my upper teeth. A day or two later the zings and stabs were replaced with a cramping muscle-like rock hard feeling that the triggers( eating, talking, touching) would set off. Unfortunatly, eating was the one act that always would trigger the zings. The excruciating cramps- 10 seconds to 45 seconds in length would days later change to a dagger like stabbing and if I pressed hard mid way between my mouth and my ear , it would kind-off make the pain ease up or- stop immediately. This would go on all day. This zinging and cramping with triggers would ebb and flow, CHANGING just about every day or two. I, oddly enough, would apprehensively look forward to waking up, to see which symptom I would be battling that day. -Annoying - (to say the least). At any rate, last week it got so bad I almost had to leave work. I could not even talk without triggering a cramplike explosion that would almost knock me over in face-pain. Now, just moving my eyes left to right or bending my head down was now triggering the pain. My eyes were tearing, my face was in my hands on my desk and my phone was just ringing away because I could not bear to answer it and have to Talk to someone..... My co-workers thought I had a problem...AND I DID...and still do. I went to the DOC again and got the next Rx in line --Nuerontin. I got for it last week but have not taken it (maybe I should) because just as quick as the pain was getting worse, it seemed to relax a bit with 800mg Teg. doing the trick and it seems some days I am 90% pain free. I know the cycle will repeat and the stabbing and crushing cramps will return. Its just a matter of when and that's the depressing part. I could not imagine this pain ALL DAY but for some people it appears to be reality and I can Only hope THAT pain will ease up or GO AWAY altogether. For me, I just wait. (My Nuerontin in my hip pocket.) Kind of like Ammo, that I don't really need now. Besides, I hear the side effects are worse than Tegretol. But when/if do need it, I most certainly will have to take it.. At any rate I don't seem to be as bad as some of you on this Post Forum. Still, as we all know, any pain like this is bad, and can be terrible. I believe its time for a TV show like 20/20 or some news magazine to do a show on our struggles. Perhaps it might make more people understand what we are going through AND push Doctors to really look into finding some real pain killers, lasting procedures and a certain cure. Thanks for this Web Page & Good Luck to All. Comments to me are welcome. Barry. Barry
BARRY <TNinTN@yahoo.com>
Memphis, Tn USA - Tuesday, October 03, 2000 at 02:20:09 (PDT)

haven't written since trileptal didn't work for me...but i'm taking 1000 mg of tegretol.....did you know that if you have this kind of pain....and nothing seems to work...even massive dosages of strong pain medication.....then if they try you on tegretol and it works...well..that's how they know it's neuralgia??i see some of you are still falling for that baloney about surgery.....don't do it....i can't stress this enough...i'm trying to convince my husband a psychiatrist...who's board certified in psychiatry/neurology to start seeing patients with this....he was also a drug researcher before he went into private practice...so he really knows his stuff....he's got to think it thru....but it won't be a pain clinic....it will be just plain good medical management with medication and maybe a little psychiatry thrown in ...lord know we need that.....if you're interested...email me and i'll see what kind of response i get....then i'll maybe be able to convince him to do this because there's such a need for someone to work with people like us in an honest, caring and knowledgeable way.....write me if you wish....beth
beth johnstone <beth.johnstone@juno.com>
houston, tx USA - Monday, October 02, 2000 at 15:49:01 (PDT)

I FIXED MY ERRORS-PLEASE FORGIVE ME SUBITTING TWICE I was in a minor rear end collision for the second time and the muscle at the base of my skull ripped for the second time. The guy that did it was in a company truck. 11mths later after alot of P.T., meds, addiction and withdrawl from Lortab, steriod shots, nerve blocks, MRIs, 4 Drs. and the muscle has grown so much bigger than the other side because of the constant spasms, it has actualy been excersing itself! Maybe that will help you understand why you are feeling more pain because if it has spasms all the time, it is like a charlie horse at the base of your skull and you have uncontrolled attacks all the time. I have been doing alot of searching about Botox because in 3 days I will be having it injected into the base of my skull where the affected muscle and nerve is and I was nervous at first but I am ok now. I have to come up with a settlement amount from being the accident. I have no idea and can not find anything good with "numbers" on the net. Any ideas would be nice. Thank-you and Jesus loves you!
Missy Green <greens4christ@yahoo.com>
USA - Sunday, October 01, 2000 at 22:31:43 (PDT)

I FIXED MY ERRORS-PLEASE FORGIVE ME SUBITTING TWICE I was in a minor rear end collision for the second time and the muscle at the base of my skull ripped for the second time. The guy that did it was in a company truck. 11mths later after alot of P.T., meds, addiction and withdrawl from Lortab, steriod shots, nerve blocks, MRIs, 4 Drs. and the muscle has grown so much bigger than the other side because of the constant spasms, it has actualy been excersing itself! Maybe that will help you understand why you are feeling more pain because if it has spasms all the time, it is like a charlie horse at the base of your skull and you have uncontrolled attacks all the time. I have been doing alot of searching about Botox because in 3 days I will be having it injected into the base of my skull where the affected muscle and nerve is and I was nervous at first but I am ok now. I have to come up with a settlement amount from being the accident. I have no idea and can not find anything good with "numbers" on the net. Any ideas would be nice. Thank-you and Jesus loves you!
Missy Green <greens4christ@yahoo.com>
USA - Sunday, October 01, 2000 at 22:31:10 (PDT)

I was in a minor rear end collision for the second time and the muscle at the base of my skull ripped for the second time. The guy that did it was in a company truck. 11mths later after alot of P.T., meds, addiction and withdrawl from Lortab, steriod shots, nerve blocks, MRIs, 4 Drs. and the muscle has grown so much bigger than the other side because of the constant spasms, it has actualy been excersing itself! No you can kind of understand what maybe why you are feeling more pain because if it has spasms all the time it is like a charlie horse at the base of your skull and you have uncontrolled attacks all the time. I have been doing alot of searching about Botox and I was nervous at first but I am ok now. I have to come up with a settlement amount from being the accident. I have no idea and can not find anything good with numbers in the net. Any ideas would be nice. Thank-you and Jesus loves you!
Missy Green <greens4christ@yahoo.com>
USA - Sunday, October 01, 2000 at 22:21:12 (PDT)

My mom has TN. She is on Tegretal and Neurontin. I was reading some of your additions to the guestbook and some said that you had memory loss and such. Well, my mom can't remember like anything. She has a hard time talking, speaking, really anything that has to do with her mouth. A while ago is when she was first diagnosed with TN. She started taking Tegratol and Neurantin after like 6 months, I believe, it went away. She had a time period without pain, but it was shortlived. The pain just recently came back and my mom is getting to the point where she wants to have surgery. She doesn't know exactly how each surgery works and how affective they are, so please if you have had one of the surgeries or if you can offer some information about them, I would be very gracious. I wish everyone out there who has TN can find a cure and I will pray for you.
Kari <Red10969@aol.com>
USA - Saturday, September 30, 2000 at 15:25:53 (PDT)

After numerous recurring bouts with debilitating jaw pain, my 81 year old mother was finally diagnosed today with TN. The comments here are so familiar to me. Unbearable constant pain...trips to dentists who could find nothing wrong with the teeth...appointments made with doctors only to finally be pain free when the date arrived for an appointment. I made the decision last evening that enough was enough. She had to see someone today who could tell us what is going on. I can't stand to see this sweet woman enduring such discomfort. I hope the Tegretol will give her some relief. Narcotic pain relievers do not help. I feel such empathy for those of you with this condition. The neurosurgeon she saw was so kind. He assured her that he was aware that her pain is very real and not something she is imagining. My prayers are with all of you.
Phyllis <PpHunt@aol.com>
TX` USA - Thursday, September 28, 2000 at 22:51:26 (PDT)

Hello.......Its been 10 weeks since I had my MVD. I still have some pain but not near as bad as it was. I go back to the Neurologist in Feb. He had mentioned the Gamma Knife Surgery since i still have pain. The MVD they couldnt find the nerves thats being compressed. I would recommand MVD to anyone whos in severve pain. Just hope its not a useless procedure as it was for me but noone knows that until you have it done. Also as for the MRI's they do well my Neurologist told me that 95% it wont show anything relating to TN they do them to check for Tumors. TN wont show on anyone unless its the elderly. Weird huh!. Well I am going to start research on the Gamma Kinfe so if anyone would like to share the experiances with it please email me...Thank you and God Bless
Rhonda <angel_35_63_99@hotmail.com>
PA USA - Thursday, September 28, 2000 at 11:40:46 (PDT)

Hello.......Its been 10 weeks since I had my MVD. I still have some pain but not near as bad as it was. I go back to the Neurologist in Feb. He had mentioned the Gamma Knife Surgery since i still have pain. The MVD they couldnt find the nerves thats being compressed. I would recommand MVD to anyone whos in severve pain. Just hope its not a useless procedure as it was for me but noone knows that until you have it done. Also as for the MRI's they do well my Neurologist told me that 95% it wont show anything relating to TN they do them to check for Tumors. TN wont show on anyone unless its the elderly. Weird huh!. Well I am going to start research on the Gamma Kinfe so if anyone would like to share the experiances with it please email me...Thank you and God Bless
Rhonda <angel_35_63_99@hotmail.com>
PA USA - Thursday, September 28, 2000 at 11:38:33 (PDT)

Hello.......Its been 10 weeks since I had my MVD. I still have some pain but not near as bad as it was. I go back to the Neurologist in Feb. He had mentioned the Gamma Knife Surgery since i still have pain. The MVD they couldnt find the nerves thats being compressed. I would recommand MVD to anyone whos in severve pain. Just hope its not a useless procedure as it was for me but noone knows that until you have it done. Also as for the MRI's they do well my Neurologist told me that 95% it wont show anything relating to TN they do them to check for Tumors. TN wont show on anyone unless its the elderly. Weird huh!. Well I am going to start research on the Gamma Kinfe so if anyone would like to share the experiances with it please email me...Thank you and God Bless
Rhonda <angel_35_63_99@hotmail.com>
PA USA - Thursday, September 28, 2000 at 11:37:40 (PDT)

Hello.......Its been 10 weeks since I had my MVD. I still have some pain but not near as bad as it was. I go back to the Neurologist in Feb. He had mentioned the Gamma Knife Surgery since i still have pain. The MVD they couldnt find the nerves thats being compressed. I would recommand MVD to anyone whos in severve pain. Just hope its not a useless procedure as it was for me but noone knows that until you have it done. Also as for the MRI's they do well my Neurologist told me that 95% it wont show anything relating to TN they do them to check for Tumors. TN wont show on anyone unless its the elderly. Weird huh!. Well I am going to start research on the Gamma Kinfe so if anyone would like to share the experiances with it please email me...Thank you and God Bless
Rhonda <angel_35_63_99@hotmail.com>
PA USA - Thursday, September 28, 2000 at 11:37:01 (PDT)

Hello.......Its been 10 weeks since I had my MVD. I still have some pain but not near as bad as it was. I go back to the Neurologist in Feb. He had mentioned the Gamma Knife Surgery since i still have pain. The MVD they couldnt find the nerves thats being compressed. I would recommand MVD to anyone whos in severve pain. Just hope its not a useless procedure as it was for me but noone knows that until you have it done. Also as for the MRI's they do well my Neurologist told me that 95% it wont show anything relating to TN they do them to check for Tumors. TN wont show on anyone unless its the elderly. Weird huh!. Well I am going to start research on the Gamma Kinfe so if anyone would like to share the experiances with it please email me...Thank you and God Bless
Rhonda <angel_35_63_99@hotmail.com>
PA USA - Thursday, September 28, 2000 at 11:36:23 (PDT)

Hello Everyone. Well Its been 10 weeks since I had my MVD. In which they found no areas compressed. My ear has finally opened and I have my hearing back in it. I am currently takin 1200mg of Neurotin a day compared to 2400mg. There are some days where I dont ned the 1200mg and skip a pill or 2. The incision is healed real well but still alittle tender to lay on my left side. I go back to Neurologist in Feb. and he did meantion the Gamma Knife since I'm still having pain. I'm going to try and start research on it if anyone out there has had it and whats to tell them experiances with it and exactlly what they do I'd appreciate it. Thank-you and I still say the MVD is a good surgery for thoses who they can find the nerves being compressed I was just the unfortuante one, but I can tell theres a differances in the pain then before I had the MVD. God-Bless
Rhonda <angel_35_63_99@hotmail.com>
PA USA - Thursday, September 28, 2000 at 11:22:39 (PDT)

My pain is more like Ellens. it never goes away. after i get enough meds in me is it tolerable. i take 2400me of neurontin and 800mg of tegretol and 150mg of amitriptyiine. enough to put of a horse! i am shakey and dizzy and can't remember anything. i can't spell, can't do math..even on paper i can't figure it out. i have had 3 decompression surgerys(can't spell) i don't know what to do next. the way i am i don't dare drive, can't do checkbook, etc. i'm desperate!!!
Char <harleysmom3@yohoo.com>
UT USA - Wednesday, September 27, 2000 at 15:44:01 (PDT)

Hi Everyone, I hope things are looking better for you. I just wanted to report that today marks nine weeks since I had the MVD surgery and I feel wonderful!! I am completely drug and pain free (knock on wood!!) and have virtually no side effects from the operation. I have a bit of numbness in my face and a little more still in my skull, but it is so much better than the TN pain. I know that not everyone has success with the MVD procedure, but I still feel that it is worth looking into if you are at the end of your rope. If I can be of help to anyone, please email me. God be with us all, you are in my prayers.
Suzanne <drudge@home.com>
Brampton, ON Canada - Tuesday, September 26, 2000 at 22:08:53 (PDT)

Advice....my sister has tn....for about 4 years now...has had decompression and the radio done....still in pain... any body have success in getting RID of this monster...
debbie <tnmaiden57@yahoo.com>
nashville, tn USA - Tuesday, September 26, 2000 at 15:32:10 (PDT)

I have had this facial pain for 3 years now. I have been to numerous doctors, chiropractors, dentists. I had spent thousands of dollars just trying to find out what is wrong. I have had an unnecessary root canal. I have finally diagnosed the problem myself. I belive it is an atypical type of TN. I never have pain in the morning; however it gradually starts during mid-morning and gradually get worse throughout the day. I have had this pain for three years now--every day. I never have a day that I don't have pain. With TN you have remission; my pain is never in remission. Does anyone else out there have these same synthoms? The pain is in my lower jaw. In the last couple of months, my face has been swelling, too. Narcotic pain killers don't even help the pain. The quality of my like has deteriated to the point that nothing is fun to me anymore. If anyone can offer any ideas, I would sincerely appreciate it.
ellen <eaipperspach@dcmdw.dcma.mil>
wichita, USA - Tuesday, September 26, 2000 at 15:10:12 (PDT)

well, I,ve been suffering for almost 2 years of, a chronic sinusite, of all sinuses, I feel extremly bad, almost 24h a day, I can't concentrate at school anymore, and they keep making me wait for an opperation, I,m not even sure it will help! if only there could be a treatment, at a certain point( which is about now) I take way too much medication, but i sincerily can't stand the pain anymore,I spend most of my time in bed, since i can't do much more! going to school helps me in no way, I tried changing environment, but nothing works, please help me!
Claudia <soleil_dor@hotmail.com>
montreal, Canada - Monday, September 25, 2000 at 15:45:40 (PDT)

I had jaw surgery yesturday. As well as all wisdom teeth removed. My Jaw has been wired shut for the next 6 weeks. This is due to TMJ. This was arthoscopic. However I had general anesthesia by gas. I am in pain not doughtfull. Anyone that is in my shoe or has been e-mail me please. Thaks Mike
mike ross <pilot754>
USA - Monday, September 25, 2000 at 14:04:28 (PDT)

After six root canals and one surgical procedure, I have been diagnosed with TN. I thought I was going insane because the dentists kept telling me they couldn't find anything wrong with my teeth but I still felt excruciating pain. There is an old Chinese saying which states that a person who is inside and warm can never understand a person who is outside and cold, and this certainly applies to TN. My bosses and co-workers don't have a clue, they think I don't talk much because I don't have much to say. I hope to get some relief soon, I've started on baklofen but so far no change. I am in the Navy and our doctors and dentists are very good and I am lucky in that respect. I am so empathetic to anyone who has gone through unnecessary dental procedures. I offer my prayers, good thoughts, and support to everyone. If something works for me I'll post the info. - Chuck
Charles Lee Wilson <wallops50@hotmail.com>
Oak Harbor, WA USA - Monday, September 25, 2000 at 01:05:26 (PDT)

On July 14, 1995, I began having TN. I took all the known medicines and either became allergic or so incapacitated (but still with pain), that I had to have surgery. In September 1997 I had a right glycerol rhizolysis which "did not take" and another in October 1997. I was pain free for a few months but have atypical pain now. The right side of my face has numbness and a burning pain and also I have enough TN pain to keep me scared pretty much all the time. No one can possibly understand this unless they have felt the pain. Even pain medication doesn't stop it. My neurologist has me on Depakote which helps some. I'm at the point where I'm waiting until I can't stand it any longer and I will opt for surgery again, but this time probably macrovascular decompression. From all the research I have done it sounds as if it's the safest and longest pain reliever known at this time. If anybody knows something different please email me. I sent all of my medical history to Dr. Janetta in Pittsburg (who was the first doctor to do this procedure), but it was for my atypical period and there was nothing he could do. I really hope I can see him when and if the time comes for more surgery. My great sympathy us all.
Joan Watwood <jray@cybrtyme.com>
Alabama, USA - Friday, September 22, 2000 at 15:08:35 (PDT)

My name is Julie. In the past 8 or 9 years, I have had this drilling pain (as if done by a hot electric drill up my teeth and well into the root and bone and up to my temple) lasting up to one minute or less, on and off during the day. However, I never had the opportunity to tell the doctor because after 3 to 5 weeks, the pain would disappear completely, only to return after 9 to 12 months. This past January however, the pain was stronger and after three months of suffering, I went to my dentist and had thousands of dollars worth of work done, including two root canals. (all on the right side where the pain was.) I know that the doctor tried to do all he could for me, but the pain continued, only so much more excruciating than before. It was suggested to me that I might have trigeminal neuralgia and I saw a neurologist and had an MRI. The results were OK, nothing wrong with me. The pain never went away. I tried Tegretol for 10 days, it worked but the side effects were not acceptable. At this point, I'm hoping for a remission because now, the stabbing and needling are less frequent and much less painful. The hot burning and drilling sensation returns when flossing, brushing my teeth or chewing. II will not ever have an operation and will continue with tegretol only when or if I feel desperate. I try to be stronger then the pain and I may try acupuncture in the future as an alternative. I have allowed the pain to take over without too much wincing as I feel that the facial contortion may aggravate the pain. And I pray.
Julie <Giuval_2000@Yahoo.com>
New York, N.Y. USA - Friday, September 22, 2000 at 13:28:34 (PDT)

isuffer with this painful monster,i`m into day 10 ofthis bout with it seems all i can do is pray for GODto see me through,like most of you nothing helps much.have started amitriptyline again please pray for me.
cathy <cathy917@webtv.net>
USA - Tuesday, September 19, 2000 at 13:29:31 (PDT)

I found by drinking hot tea as hot as you can take it before taking apain pill it really helps. the doctor told me what I am sctually doing is melting the pill and speeding it through my system hope this helps some one else
robert green <gthriftybob@aol.com>
sanbernardino, ca USA - Tuesday, September 19, 2000 at 09:30:13 (PDT)

here is something I found out ,if you take hot tea or soup as hot as you can stand it just before taking a pain pill it really helps , I t5old my doctor about this , he said what im actually doing is melting the pain pill and speeding it to my system , whatever im doing it helps , hope this info helps someone else
ro9bert green <gthrifty bob@aol.com>
sanbernardino, cahi again USA - Tuesday, September 19, 2000 at 09:25:09 (PDT)

here is something I found out ,if you take hot tea or soup as hot as you can stand it just before taking a pain pill it really helps , I t5old my doctor about this , he said what im actually doing is melting the pain pill and speeding it to my system , whatever im doing it helps , hope this info helps someone else
ro9bert green <gthrifty bob@aol.com>
sanbernardino, cahi again USA - Tuesday, September 19, 2000 at 09:24:04 (PDT)

i have had tgm for 11 years i have taken tegretol,dylantin baclofen neurontin and had the surgery where the nerve is burnt which i would never go through again, it was awful and left me painfree for 6 weeks i would like to hear from people that share this horrible disease
robert green <gthriftybob@aool.com>
sanbernardino, ca USA - Tuesday, September 19, 2000 at 09:01:17 (PDT)

i am interested in hearing about other peoples battle with this disease
robert green <gyhrifty bob@aol.com>
san bernardino, ca USA - Tuesday, September 19, 2000 at 08:40:35 (PDT)

I was diagnosed with Trigeminal Neuralgia a couple of weeks ago. It has been a long few weeks. I appreciate all the information you offered. I had not ever heard of this condition prior to hearing the physician tell me I had it. Thank you for all the information. You have a great web page.
Carmel <chercarm@msn.com>
Oklahoma City, OK USA - Tuesday, September 19, 2000 at 01:19:39 (PDT)

Has any one tried Trileptol, new drug approved by the FDA earlier this year? ALso, altho no pain right now except in ear, I have complete numbness on left side of face, esp.in chin and inside left lower teeth. No surgery or accidents related to any of this. Any experience with numbness? Miriam 9/17/00
Gmaer <GMaer@aol.com>
Miami, FL USA - Sunday, September 17, 2000 at 17:40:52 (PDT)

Hi again, I just wanted to add an update to my last entry. My wonderful neurologist called me back after I called him a total of five times over a 2 week period, he returned my call 2 weeks later. Isnt he wonderful?????? Well I had to go to my family doctor and I was put on tegretol 100mg 2x day which i must say that I got relief in about 2 days after I started taking it, well yesterday I started to get this headache on the left side of my head which contiunued to get worse and worse to the point where I could not even move without excrutiating pain, I wanted to die, it hurt so bad, it was the left side of my face only from my top of my head to my chin, everything felt numb and felt tingling almost like being itchy, but not. Needless to say I called my neurologist to see if this is normal and of course he was not there what else is new?? I called my family doctor who refused to order me anything for pain since she just gave me ultram last week, big deal it was not helping, they just dont understand how bad it hurts. I had to pick my daughter up from school and I am not sure how I even got there but I made it there and back in one piece thank GOD for that. Has this happened to any one else and if so what have you done to make it better, I tryed ice, dark room, quiet and nothing worked, I took a total of 500mg of ultram and nothing 200mg tegretol still nothing and the vistaril 50mg and nothing finally I took 3 darvocet and said that I did not care if my tegretol levels were higher I just could not take the pain anymore,, finally after hours of pain and torture, my head feels better but now instead of that pain I have the stabbing and numbness from my cheek to my chin and sharp pain under my left eye. Lots os fun this thing is. Cant believe that there is nothing to make this better and the drugs make you stupid and forgetful, hate that too but I guess being forgetful is better than having lots of pain but even with all of the meds there is still pain, you are never pain free, this is very hard to deal with especailly with small children, job ,husband , school and all the other responsibilities that there are in life. If any one has found anything out there that has helped or if anyone has gotten this type of headache please please let me know so that I know I am not alone in this. Thank you all so much for everything and I pray for all of you and that some day we will all remember what it is like to be pain free and what our lives were before this came into our lives. Feel free to write to me at anytime. Lisa
lisa <lisae0608@aol.com>
USA - Friday, September 15, 2000 at 17:22:11 (PDT)

Hi Fellow Sufferers: My name is Marion and I have Neuraliga. Currently I am on Neurontin and pain killers, sleeping pills and what ever else I can get my hands on. I can't stand the pain. Anyone know of anything that will help. Also suffering memory loss. Any of this familiar. Would love to hear from someone living in Burnaby, B.C. with any good suggestions on Neologist and pain relief methods.
Marion <officehag@yahoo.com>
USA - Thursday, September 14, 2000 at 21:31:41 (PDT)

There are many ways of approaching the various neurogenic conditions listed in this guestbook. Surgery is usually considered a last resort, as complications may arise. Among them: increased pain, partial or total anaesthesia of teh affected area, or no effect at all. My treating doctor informed me that surgery, MVD, HRFTC, and other invasive or non-invasive procedures not requiring medication, are usually reserved for patients whose life has been overtaken by the blight of TGN, or any other chronic or acute neurogenic condition. Only the patient knows the full extent of the suffering they have to endure, sometimes, unfortunately, for a lifetime. I have been diagnosed with causalgia (burning type neurogenic pain). I have been taking Klonopin and Doxepin EVERY day for nearly 5 years. Fortunately I have tolerated both medications well, and my condition has stabilised. I MAY have to continue taking these medications for the rest of my life, unless, in the near future, I choose to tolerate my condition without medication, or opt for surgery. The only impediment is finding a surgeon willing to perform surgery on a patient they consider to be too high a risk. Surgery may leave half my face paralysed, and permanently drooping, resulting in drooling, and an inability to notice any accidental chewing of my lip, or being unable to shave without literally lacerating the left half of my face. I am in my mid 30's. I may have to live with this condition indefinitely. However, I am continually seeking alternative options. Good luck to you all, and please remember, at one stage I was at the end of my emotional tether. Several unsuccessful consultations with ill-informed, indifferent and insensitive doctors, culminated in a consultation with a SPECIALIST in an ORO-FACIAL PAIN clinic. I thank my current treating doctor for my good fortune. Whatever you do, please DO NOT GIVE UP.
Zap Coleman
USA - Thursday, September 14, 2000 at 18:14:34 (PDT)

Hi I found this guestbook several months ago and it has been wonderful support for me. I had MVD done July 18 and when I woke up I thought it had worked. I was numb from them crushing the nerve, so I had no facial pain. after about three weeks the numbness wore off and all the pain returned. some pain had changed. and some spots no longer hurt and some new pain had shown up. I was so depressed. Im considering having the nerve cut. I would like to hear from anyone that has had that done. I need so badly to be pain free. I have suffered on and off for 15 years. I want my life back, I'm only 35 and I have two small children. I want off all the drugs so I can do more than sleep. any input would be welcomed. thanks
Jan <jan.zook@grandronde.org>
willimina, OR USA - Thursday, September 14, 2000 at 10:35:02 (PDT)

My wife is suffering excruciating agony with Trigeminal Neuralgia. It first started in early 1993. She went to several Neuroligist. They tried her on several different medicines such as Tegretol, Neurontin and many Narcotics She could not tolerate the side effects of Tegretol and Neurontin did her no good. Her regular Neurologist was out of town one weekend and she had to see his associate. He told her that he had read where Elavil had proven effective on this condition. He prescribed 25 mgs. and it helped. He then increased it to 50 mgs daily and it helped so much the pain went away until about three months ago. It has returned. Elavil will help a little. But it is not working now as it did before. If anyone can offer any further help, for her sanity and mine I would greatly appreciate it. I know what pain is for I suffer from frequent disabling Migraines. God bless you I hope we can all find some relief.
Al Hamilton <ranos@aol.com>
USA - Monday, September 11, 2000 at 22:25:47 (PDT)

I haven't been to the doctor, much less benn diagnosed with anything, but, I'm having a sharp pain that shoots from my right temple to, what feels like, my brain! It only happens a few times a day, sometimes never and it only last a few seconds but it hurts. Sometimes the right side of my jaw hurts but not at the same time? Can anyone help me? Thanks and God Bless!
Amanda <abdenson@hotmail.com>
Palestine, tx USA - Monday, September 11, 2000 at 20:36:55 (PDT)

Hallo friends, reading these comments has made me feel less lonely. My father who is 80 is in hospital at the moment with severe TN. He's already had 2 operations to cauterize the nerve and each one has only made him pain free for approx 9 months. He's got to have another op this week if he's fit enough, but is so weak due to pain and not eating properly for ages. I'm so worried this condition will kill him in the end. Please pray for him.
Karen Rocks
U.K. - Monday, September 11, 2000 at 04:39:06 (PDT)

Hi! Im Jorina, 24 y.o.from Philippinesand like everyone of you there i have Trigeminal Neuralgia.. reading your messages here in the guestbook makes me laugh (some)but the truth is its scares the shit out of me.. Im using this Tegretol tab and when i dont use it the pain comes back... Im thinking that Am I going to use this medicine for the rest of my life.. I dont want to. coz it makes me sick. It takes away the pain but it gives side effects like I overslep en I feel drowsy all the time and headaches too. Ive read one in this guestbook that 1 sideeffect is memory loss. its really driving me crazy sometimes i do have one en also i cnt hear. Gosh maybe its a side effect too......Grr!!!!
Jorina S. Bringas <b_jorina@eudoramail.com>
Cebu, Philippines - Monday, September 11, 2000 at 03:22:31 (PDT)

I have had this since January. Iam on tegretol which helps but I feel like a zombie. No doctors seem to really be interested. I have been writing 20/20, dateline, Leeza, Montel. for months and get no response. I want to know whats next. I can not live with this. I can not.
patricia matthews <opangma@anv.net>
henderson, nv USA - Sunday, September 10, 2000 at 16:05:58 (PDT)

I have had two MVD, one in 1992 and again in 1996 (with major complications) for TN. Last April, I went to the University of Pittsburgh Hospital for Gamma-Knife. I am now off the 4800mgs of Neurontin, facial pain free, but experiencing severe headaches. My neurosurgeon and neurologist don't have a clue as to what is causing this pain. Has anyone out there had gamma knife and experienced this? Incidently, given the choice between MVD and Gamma - I'd take the gamma!
Katherine Flanagan <flanagankatherine@hotmail.com>
Chesterfield, MI USA - Friday, September 08, 2000 at 19:47:42 (PDT)

Hello to all,I again want to thank all of the people that have written to me and have given their support. I am so sorry for anyone who has to endure this horrible thing that we have to live with on a daily basis. I am presently taking tegretol 100 mg twice a day and ultram 75mg 3 tines a day and also taking hydroxyzine 50mg at night to sleep. I called my neurologist a total of 4 times and he never called back. I have to agree with the one person who wrote in and I am sorry that I do not remember your name but since starting all of these meds I cant remember much, but she is nurse and so am I, doctors dont care and think that they are gods and they are not. I went to my family doctor for help and her response to me was "I dont know what you want me to do for you" isnt that a nice response, what would I have done if I was not a nurse and did not know the things that I know. It is scary, most family doctors dont even understand what the TN is let alone how to treat it. I told her what to order for me, this is the same combination that has worked for someone else I know so I told her that is what I wanted to do. I have not heard anything from 20/20 but I am going to email them again and remind them to please do a show about this. I am thankful to all of you for your help and support, this is not an easy thing to go through and it is so nice to see so many people who dont even know each other to be so supportive to a bunch of strangers, it is nice to know that great people do exist in this world. God bless all of you and I pray for all of you that they find a cure for this problem of ours. Stay strong. Please feel free to write to me at any time. Lisa
lisa <LisaE0608@aol.com>
phila, pa USA - Friday, September 08, 2000 at 17:07:50 (PDT)

I am writing because I am literally at the end of all options and I don't know where to turn. I am been diagnosed as having some sort of TN, neuralgia, etc. I think it all started when I was about 13 years old (I am 41 years of age now) when I was involved in a wierd accident, where I had an item in my mouth that was suddenly jolted outward and upward. This accident caused my teeth to almost being knocked out (while being jammed upward and outward toward by nose). I was knocked unconcious and then taken to an oral surgeon, who seemingly fixed the problem. About 3 to 4 years later (especially in my freshman year in college), I noticed noticiable to moderate pressure being applied to my eye teeth (which were being diagnosed as sinus problems ---- although I had no sinus problems). I thought I had cavaties in these eye teeth and went to have them checked out repeatedly - but to no avail, the dentists said my teeth were fine. To make a long story short, for over 20 years the problem has gotten progressively worse. Seven years ago, I was so addicted to pain medication, I went to Betty Ford to get off all meds, but that didn't solve the problem -- the pain that caused me to take the meds is still there. Two years ago I went to a physician in Denver to have Gamma Knife surgery. After the surgery, which had limited success (instead of crippling pain that was on one side of my face -- usually behind my left eye the pain instead of being a 9 out of 10, 6 days a week, is a 5 or 6 out of 10, 7 days a week. Asprin, which all I have been taking for the past 7 years, is no longer an option. I had a bleeding ulcer twice in the past 12 months and in the 2nd incident, I almost died (my doctor said I no longer can take asprin). I have a marriage which is virtually non- existant, due to my lack of sexual drive, and bad attitudes due to the condition. I try to spend 2 full days each week with my 5 year old son (who means the world to me), but playing with him takes all the strength I can muster. I have been on a regular exercise regiment for the past year where I jog 3-4 miles a day and looking at me 5'11" 180 pounds, I look like I am very healthy. However, I have to keep up this exercise regiment, knowing full well if I stop, I may never have the energy to start again. This exercise and having theraputic deep massage twice a week is the only thing that keeps me going. Thank God, I make an extremely good income to support this type of self perscibed therapy. Anyway, my pain is getting quite progressed and pronounced lately (especially in the past 6 months). It is amazing how many doctors know little in regard to treatment. I saw one reported top headache physician in San Jose, who said it was all related to individual attitude and stress. After seeing him for 6 months, keeping a diary etc, I am no further toward a remedy (although he promised he would be able to do so --- he even stated it was all due to my hectic work schedule and travel and I took off 3 months to support his brand of "individual tratment". Please ANYONE ==== if you have any suggestions, I live in the Los Angeles area - please give me any suggestions or referrals. Again, I am literally at the end of my rope. The only thing that keeps me going is my 5 year old son. Here are my syptoms: 1. I have pressure beind my eye teeth (not sinus related) It used to be 90% beind my left eye, now after the gamma knife operation --- about 80% of the time it is behind both eye teeth. 2. This pressure "seems" to spread to my left jaw and behind my left temple where the pressure is so ungodly that it feels that I may black-out. One time, I even lost my hearing in my left ear for 3 weeks. A ear "specialist" said I had sudden hearing loss and said there was no cause or cure (that this thing sometimes happens). 3. With this pressure (again, this is not sinus related) my eyesight is blurred etc. 4. My energy is zapped -- I often feel fatigued, beat up, and lately depressed. Sex drive, as I mentioned before, is minimal (although, once in a blue moon, when I feel well, this is not a problem). 5. The problem almost feels muscular or vascular altogether. When I get really ill, I'll start to shake a little or tremble, my neck tics, and the muscles between my ear and jaw seem very tense. 6. This is not a condition the appears and disappears once or twice a day. It is contstant. Each day to a different degree and different pain scale. I pray now for the good days. Again, if there is anyone who can realte, give advice, or give referrals I am extremely open and at the end of my rope. Thanks agin.
Kirby <Iht2flyUAL@aol.com>
Canyon Country, CA USA - Wednesday, September 06, 2000 at 17:31:24 (PDT)

Hello to everyone. This is just a bit of an update on my situation. Yesterday marked six weeks since I had the MVD surgery and I am so happy to say that I am still totally pain free!!!! Almost all of the numbness from the surgery is gone, but with whatever remains, I can live with it. This is truely been a miracle for me. I realize that this procedure is not 100% successful all of the time, but when you way the options it is worth a try. If anyone has any questions about this please feel free to email me or write it in here. On a different note, has anyone received an answer from ABC's 20/20? I sent an email a few weeks ago and I know that several of you out there did as well. I am going to send them another email to gently remind them of the need for coverage on face pain. I was also wondering if there are any people from the Greater Toronto Area that check out this site. I think it would be so great to start a support group, but my doctor does not know of an exsisting one. Is there anyone out there? Please let me know, it is never too late to help each other. God bless you all and I pray your pain goes away.
Suzanne <drudge@home.com>
Brampton, ON Canada - Wednesday, September 06, 2000 at 10:36:05 (PDT)

I have had TN for about 8 months. When I first got it I started taking 300 mg of Tegretol 3xs daily after a few weeks went down to 1 100mg pill each morning. About 2 weeks ago I started getting zaps again fortunately this time the zaps moved down to under my left eye but I am now up to 400mg of Tegretol 3xs daily and it's not helping very much.I think I will try the Gamma Ray treatment.Does anyone know the best Doctor in Atlanta for this procedure. Thanks and believe me I feel your pain.God Bless
Rich Lewis <lewisk@mindspring.com>
Marietta, Ga USA - Wednesday, September 06, 2000 at 10:33:09 (PDT)

Hello to all, I have not made an entry to this site in a few months, however reading new mail my heart aches at all the people that suffer with tjn and occipital neurol. I have not been able to find a cure for the pain. I have been turned down by Mass General in Boston. Everyone says that they are the best at working with patients with difficult to diagnose problems. I called and my pcp talked with two different neuro drs. Both basically pushed us away. This is sad. As a nurse, I always wondered why some people ever entered the medical field. If it was for money, it shows. I always thought doctors took an oath to put the care of the patient first-that must have been omitted in med school where the doctors at Mass General attended. I feel bad that all of us on this site have such a hard time surviving day to day and I truely feel that as I read these entries that some doctors give out medicine to "mask" the problem not solve so they are not bothered so much. This saddens me. I have made it a goal to find and research areas that may be helpful for us. God Bless and Have the best you can.
april gougeon
USA - Monday, September 04, 2000 at 23:30:48 (PDT)

Hello to all, I have not made an entry to this site in a few months, however reading new mail my heart aches at all the people that suffer with tjn and occipital neurol. I have not been able to find a cure for the pain. I have been turned down by Mass General in Boston. Everyone says that they are the best at working with patients with difficult to diagnose problems. I called and my pcp talked with two different neuro drs. Both basically pushed us away. This is sad. As a nurse, I always wondered why some people ever entered the medical field. If it was for money, it shows. I always thought doctors took an oath to put the care of the patient first-that must have been omitted in med school where the doctors at Mass General attended. I feel bad that all of us on this site have such a hard time surviving day to day and I truely feel that as I read these entries that some doctors give out medicine to "mask" the problem not solve so they are not bothered so much. This saddens me. I have made it a goal to find and research areas that may be helpful for us. God Bless and Have the best you can.
april gougeon
USA - Monday, September 04, 2000 at 23:29:58 (PDT)

Hi my name is Kathy, My age is 50. I was just Dx with Bells Palsay. I would like to know what the average time of recovery may be. I am in my forth day of right side facial paralyzes. I was put on 80mg of Predisone for 3 days, then 60mg for 3 days, 40mg 3 days, 20mg three days, along with the anti-viral medication Acycolvir 400mg 5 times a day for 10 days. I have had sharp pain in my left ear when I chew. This started two days befor the Bells palsey was noted. My Grandfather was Dx with it when he was in his 70's and he never fully recovered fully. I am hopeing that my age will be a benifit to my recovery, seeing Grandpa was much older when he was Dx. with it. I would appreciate any input you may have as to the treatment and the duration of paralyzes. Thank You Kathy
Kathy Ellison <mellison@tir.com>
Farwell, Mi USA - Monday, September 04, 2000 at 14:54:44 (PDT)

I know that my story is quite a bit different from all of the others that I have read. I am 19 years old, and have epilepsy. I was diagnosed when I was almost a year old. I have been on so many different medications, I cannot remember all of the names. I had taken Tegretol for quite a while though. I was finally able to switch medications, after I had gained a lot of weight, in a short time period. I am currently taking dilatin. I am 8 1/2 months pregnant, and I haven't had too many seizures since I have been pregnant. I am very lucky. However, I haven't felt too well here lately. I can usually feel a seizure coming on, and it is the worst feeling. -That is how I have felt lately. I am due on the 14th of October, and am a little nervous. This is my first child, and I have heard that many people with epilepsy go into seizures, when they are in labor. I have been through a lot, and am trying to make the best life for me and my son. I am just wondering if anyone may be able to relate to me. I would appreciate any advice you may have. I don't know many people that can even relate to me. I am grateful you took the time to listen.
Mary
USA - Friday, September 01, 2000 at 20:19:29 (PDT)

Update...I just talked to my dr. and he upped my Tegretol now to 800 mg a day since the 600 by itself was NOT taking care of the TN pain. I am totally off of the Vicodin AND Napralan in two wks time, but still have big time withdrawal shakes from getting off of the Vicodin. If anyone else has gone thru this, I'd love to hear from you and know how long this "shakey hands" spells are going to last. God Bless all of us,
Marilyn <corkyham@hotmail.com>
OH USA - Thursday, August 31, 2000 at 11:00:05 (PDT)

I am 31 and have Tn Or atfp ? I am on Neurontin and Pamelor and take Panlor for bad pain its like supped up Exiderin it work for me most of the time but still have break thew pain some times.I want surg. but Doc says wait. I pray for you all suffering like me.That they find something help us all!God bless
Janet Hill
luthersville, GA USA - Tuesday, August 29, 2000 at 08:01:16 (PDT)

I have had TN since Nov. '98. I was on Neurontin and Vicodin until Feb. '00 and at that time the dr. switched me from Neurontin to Tegretol. I started at that time with 300mg a day along with 1000 mg of Vicodin a day. Two wks ago my dr. suggested that I try to get off of the Vicodin since it can be addictive. In order to do this, I am now up to 600mg a day of the Tegretol. He said that since I'd been on the Vicodin for 2 yrs that I might have "withdrawal symptoms". He was right. I have periods a couple times each day where my hands shake uncontrollably or I feel like my insides are jittery. It usually lasts up to 30 mins then goes away. For the most part, the 600mg Tegretol is handling the TN pain, but I am just wondering, what do I do when I get the extra pain? The dr. said that I could take as much as 800mg on "bad days" but some days even that doesn't handle the pain. He also said that it might take as long as 6 mo. for my body to get used to not having the Vicodin. I just need some suggestions as to how to handle these "withdrawals" from the Vicodin. Thanks, and God Bless you each and every one
Marilyn <corkyham@hotmail.com>
OH USA - Monday, August 28, 2000 at 19:17:37 (PDT)

Desparate for 77 yr. old mother, tried all the meds. pain now lasting several minutes, please help. Need info on gamma knife procedure, would love to hear from someone who has had this procedure at Presbyterian Hospital in Dallas, Tx.Anyone who has had this procedure anywhere, please help.
Debra Tregellas <timdebra@arn.net>
Perryton, Tx USA - Sunday, August 27, 2000 at 13:43:42 (PDT)

Desparate for 77 yr. old mother, tried all the meds. pain now lasting several minutes, please help. Need info on gamma knife procedure, would love to hear from someone who has had this procedure at Presbyterian Hospital in Dallas, Tx.Anyone who has had this procedure anywhere, please help.
Debra Tregellas <timdebra@arn.net>
Perryton, Tx USA - Sunday, August 27, 2000 at 13:43:36 (PDT)

Hello again, thisx is the second time I have written in. I just wanted to say how thankful I am to this site. I have met wonderful people through this site and they have become so much of a support to me. They are wonderful people and I wish them well with this problem. I have been back to the neurologist since my last entry and before I had gone back I had been up to 2400mg of neurontin every day and still no real relief. He asked me about side effects and I said just very tired and feeling as if my head were in a cloud somewhere. My memeory has gotten so bad since all of these medications, it is horrible and driving me crazy.He now gave me the new drug called trilepetal which I have been on for several days and no releif just more pain so I just called rhe office and got an ansering machine I need something to just make me feel better for a little while. All of a sudden I have jaw pain that i did not have before and more stabbing pains that stop me in my tracks. My husband is very supportive and needless to say upset to see me in so much pain. I have started to read the book called striking back the trigeminal neuralgia handbook and it has lots of great info. in it. Well I hope everyone feels better and good luck to all and God bless all of you wonderful people for all of your support. Love Lisa
lisa <lisae0608@aol.com>
phila, pa USA - Thursday, August 24, 2000 at 14:13:54 (PDT)

Just updating from my last report.... the pain clinic in my area was somewhat helpful, as much as most doctors are anyways. How can you NOT be discouraged?!?! He renamed my pain as Neurological Facial Pain with no cure. How uplifting! He administered nerve blocks to me. It was quite an odd feeling, having needles injected into the base of my skull, but they seemed to work for about 3 minutes. I couldn't really be sure however. After having continous chronic pain for two years, it's hard to remember what it's like not to have any. Has anyone else tried these nerve blocks? What are these nerve clips people are mentioning? I don't know about the rest of you, but I'd take surgery over the side effects of medication any day! Could someone give me a little info? Once again, it's nice to know you're all here :O)
Amy <bloodycake@hotmail.com>
Canada - Thursday, August 24, 2000 at 10:39:25 (PDT)

Here is again my Electronic Address.
Rigo S.
OR. USA - Wednesday, August 23, 2000 at 21:20:29 (PDT)

I have 2 kids that need orthodontic's work,. unfortunately its very expensive for me. Exceds $2,000.00 each, I wish some orthodantic see this message and contact me at my E-mail address below. I live in Lane county Oregon, but I will travel same if is neccesary. Thank you so much. Este mensaje es para solicitar ayuda de un ortodonto mas cercano a Lane County, que me quisiera ayudar a trabajar con mis ninos que necesitan trabajo en sus dientes, pero que me es muy caro pues, los estimados que tengo hasta ahora exceden a los $2,000.00 y quisiera un precio mas rasonable. Gracias, comuniquese por medio E-mail a la direccion electronica abajo. Que Dios se lo pague por su ayuda.
Rigo S. <rainbow_97477@yahoo.com>
OR. USA - Wednesday, August 23, 2000 at 21:16:49 (PDT)

PLEASE HELP ME! My son was diagnosed with bilateral geniculate neuralgia about a year and a half ago. He was in such pain at times he would pass out--he was only 10 or 11. We went through almost a year of going in and out of the hospital and tried Neurontin w/Elavil, Tegretol (horrible side effects, then got toxic) and finally we got him on Dilantin which did the trick for controlling the pain. If ever his health was compromised however, he would have problems. We eventually, over 6 mos. weaned him off the medicine and the pain was limited to one or two short stabbing pains a week. Suddenly, the pain is reappearing for longer periods of time and just about daily. He has had numerous illnesses, yet no connections have been made. Is there anyone out there who can help me? We were about 2 weeks from going to Pitts. for neurosurgery (his pain was intolerable) when we discovered the dilantin. Meanwhile, I'm in a panic that my son is going to return to that life of hell and pain. Is there anything new? Does anyone have any suggestions as to why this is happening? Any different approaches people have taken? Is there a Dr. out there who can help? Anyone? Thank you.
Tina Epstein <Tinalae@flash.net>
Dallas, TX USA - Wednesday, August 23, 2000 at 18:30:11 (PDT)

PLEASE HELP ME!
Tina Epstein <Tinalae@flash.net>
Dallas, TX USA - Wednesday, August 23, 2000 at 18:18:46 (PDT)

Lamentablemente no hablo Ingles, pero basicamente mi consulta es que si alguien en esta inmensa red tiene informacion de como o que puede aliviar la Neuralgia al Trigemino, que afecta a mi esposa. Agredecerè cualquier informacion al respecto y ayudare a quien la necesite. Por favor ruego informacion a: lalitochile@uole.com // telefono 68 35 88 Viña del Mar / Chile / Infinitas Gracias..
eduardo <lalitochile@uole.com>
viña del mar, chile - Wednesday, August 23, 2000 at 11:45:29 (PDT)

MY PAIN IS SO BAD IN THE UPPER AREA,OCCIPITEL NEURALGIA,BUT I THINK AS WELL AS MY CHIROPRACTER IT IS THE SECOND VERTRBRA,ON THE XRAY IT SHOWS CLEARLY THAT THIS ONE IS TWISTED,IM TOLD.I WOULD RATHER HAVE SURGERY THEN GO ON LIKE THIS.IM SO DOUPT UP WITH ALL THIS MEDICATION.SORRY FOR MY BAD SPELLING,I CAME FROM AUSTRIA,ENGLISH IS HARD FOR ME,BUT I DID WRITE A VERY GOOD BOOK ABAUT MY LIFE"BEYOND THE DARK CLOUD".I WOULD LIKE TO THANK YOU ALL,FOR SHARING,AND LETTING ME SHARE WITH YOU.PEACE-HEALTH AND COMPASSION-THEA SCHLOSSER
Thea Schlosser <cfidsmedia@aol.com>
USA - Wednesday, August 23, 2000 at 05:03:50 (PDT)

I have severe nerve damage from a hernia surgery in the groin area. I have looked at the website of www.dellon.com and actually wrote to Dr. Dellon. I have not been able to receive enough information back from him to decide if he is for real or a hoax -- example -- he won't give me any real answers other than fly out to Baltimore and i will operate on you and you will be better. Has anyone else had any real experience with this doctor -- good or bad - before I waste my hard earned money and fly out to see him. Thanks. Eleanor2235@aol.com -- Ellie Ann
Ellie Ann <Eleanor2235>
IL USA - Tuesday, August 22, 2000 at 22:23:26 (PDT)

OK GUYS AND GALS, I just went to ABCNEWS.com, picked the 2020 show and left an email about our problem.It was very simple and painless, all of you need to do it and maybe they will react with an article about us sufferers...DO IT! Pat
Pat Kelly <pk1313@gulftel.com>
Orange Beach, AL USA - Monday, August 21, 2000 at 22:57:32 (PDT)

OK GUYS AND GALS, I just went to ABCNEWS.com, picked the 2020 show and left an email about our problem.It was very simple and painless, all of you need to do it and maybe they will react with an article about us sufferers...DO IT! Pat
Pat Kelly <pk1313@gulftel.com>
Orange Beach, AL USA - Monday, August 21, 2000 at 22:57:06 (PDT)

OK GUYS AND GALS, I just went to ABCNEWS.com, picked the 2020 show and left an email about our problem.It was very simple and painless, all of you need to do it and maybe they will react with an article about us sufferers...DO IT! Pat
Pat Kelly <pk1313@gulftel.com>
Orange Beach, AL USA - Monday, August 21, 2000 at 22:56:41 (PDT)

My mother has been suffering with TN for over 12 years. It has always in the past been intermittent, recurring every 1 to 2 years and lasting a few weeks then mysteriously fading away, yet to come again. She can't tolerate Tegretol, has been on Neurontin for over a year and it had been working with only a couple of short bouts until last month. After starting again her Neurontin was increased to the max and the pain went away for about 4 days then came back with a vengence. After not eating or being able to bear the pain to talk for a week and only swallowing enough water to get her laundry-list of pills down her Dr. gave her IV's Thursday evening which included pain relievers. She is still pretty zonked out but I have had to wake her for her meds. I can tell, although she has been able to sleep, that when she swallows or tries to talk she is still experiencing the pain. She still can't eat anything, not even a thin milkshake. It seems that not everyone has good results from surgeries but MVD seems to have the best results from what I've read. Several months ago I read a story about a lady named Fran that said she had a glycerol injection that relieved the pain for 2 weeks which gave her enough time to get strong enough for the surgery. My mother is so weak now that I know she would have to be better to be able to tolerate the surgery. She is only 69 and has always been very active. It is devistating to see her going through this. I had been living away from her and hadn't seen 1st hand what a horror this is for her until this time. I feel desperate to find the best doctor possible for her, no matter where he/she is. I asked her if she would consider the surgery this morning and all she could say was "not here." I am e-mailing those of you who have praised your doctors in you postings but anyone else who can help, PLEASE!!!, your time to help will be greatly appreciated.
Wanda Bressman <Wbressman@aol.com>
Columbia, MO USA - Saturday, August 19, 2000 at 07:23:06 (PDT)

I have had TN for 5 years. Both sides and 3 surgerys later I am still on medication. 2400 Neurontin 600 Tegretol and 150 Amitriptyine. It is very discouraging. We keep changing around my meds. Right now at these dosages, it's livable..if I take the meds on time. I have had 1 nerve clipped, now I have a burning but agony to the light touch on that side of my face. It is comforting to know I'm not crazy, that others know the pain does come back. I think that at these doseages, it wouldn't matter if I had the surgery or not. I do not recommend the nerve clip. I don't know what I'll do if the pain breaks through. The Tegretol levels in my system were so high, she backed me way down and didn't compensate with the Neurontin. Overnite, I was in agony. I upped my own dosage and told her. She didn't argue. But now I'm having a hard time with side effects of the Neurontin. What I would really like to know is if there is a chat room for us TN sufferers? If we're having a bad day someone might encourage us to go on. No one knows what hell we go through but us. Feel free to e-mail me.
Charlene Despain <harleysmom3@yahoo.com>
Salt LakeCity, UT USA -

My aunt has recently come back to Ireland after living 40 years in California. She said she was diagnosed with Fibro Maialgia, while in the states but there is not much for her to learn about it here. What helps? She's in great pain - how can this be helped to ease the pain? Thank you so much. Sinead McLoughlin
Sinead <emcloughlin@esatclear.ie>
Dublin, Ireland - Thursday, August 17, 2000 at 14:51:56 (PDT)

Hi all....Well I have to agree with Suzanne. I also had the MVD about a week before her. My was not as successful as hers but I am dealing with it. I still have alittle TN pain but not near as bad as what I was having. I also went to ABC and sent them an email about TN. I think we all need to pull together and make this terrible illness aware to the public. There's probably alot of people out there being missed diagnosed or cant afford the procedures or medications. As for me and my next step I'm really not sure but I am taking one day at a time and thanking god that this illness as painful as it may be has some help out there but we have to try and make it public worldwide. Well thats all for now and anyones welcome to email me. Thank you and god bless everyone with this and there families also.
Rhonda <angel_35_63_99@hotmail.com>
Chambersburg, PA USA - Thursday, August 17, 2000 at 09:21:03 (PDT)

Hi, it is me again. I justed wanted to let you all know that the in order to send a story idea to 20/20 you have to go to ABCNEWS.com. Once you are there you just follow the links. I beleive that if you scroll down you will see where it says to send an e-mail. I just finised sending my note off to them and hopefully it will do some good. I just told them a little about Trigeminal Neuralgia and the need for exposure. It would be great if as many of you as possible could send an e-mail to. If anyone does and they get a response, please let the rest of us know and I will do the same. Have sweet dreams everyone and God bless.
Suzanne <drudge@home.com>
Brampton, ON Canada - Thursday, August 17, 2000 at 00:06:52 (PDT)

Hi everyone, I hope all is well. Two things I wanted to mention today. First off all it has been three weeks since I had the MVD surgery and so far so good ( knock on wood)! My surgeon said that they found two blood vessels compressing on the nerve and they took care of it. I am recovering, but it is and will be slow. If you have any questions or comments on this procedure, please e-mail me. Someone had commented that we should not be allowing ourselves to have surgery without giving Tegretol a chance. This is just my voice on the matter, but I was on Tegretol when I was first diagnosed with TN and I almost died because of it. First it did not work and I was told to keep at it, not to give up on the Tegretol. My neurologist even said to be a "brave soldier", yet it hurt so bad. The side effects were the worse thing I have ever felt, besides TN and eventually I ended up in hospital because of an allergic reaction. The allergic reaction will not happen to everyone, but since then ( a year and a half now), I have been on Neurontin, Topamax, Baclofen, Amitryptaline and Epival and I still was not even close to being pain free. I am not saying to stop your drugs and go for the surgery, but do not rule it out. The drugs can be just as lousy as the affliction itself. The second thing I wanted to bring up is the idea of getting a news program, like 20/20 on ABC to do a story on TN. There have been a few interested parties here. I checked into it and alls you have to do is find ABC thru a search engine. Once you have that they have a place where you can e-mail story ideas and for what show you like. I myself am sending the suggestion off to the 20/20 show. You never know what might happen. It would be worth it if more light could be shed on this horrible disorder. Well, that is it. I hope all of your days are peaceful and pain free. God bless
Suzanne <drudge@home.com>
Brampton, ON Canada - Wednesday, August 16, 2000 at 23:27:13 (PDT)

Hi my name is Lisa and I am a 29 year old who has recently been diagnosed with trigeminal neuralgia. I had sinus surgery to remove a cyst that formed and developed horrible facial pain 3 weeks after the surgery, the ENT told me that the pain was from the swelling related to the surgery, needless to say the pain never went away and I needed to have surgery again to remove the same cyst that grew back. Needless to say I have been having chronic pain on the left side of my face since Nov. 1999. The ENT suggested a neurologist and he agreed that it was TJN. I was on topamax and got immediate relief only for about 1 week only to be in pain again. I am now on Neurontin 900mg , my prescription ran out and have not gotten a chance to refill and the pain is horrible. Feel as is my left side of my face is swollen and feels funny like it is almost numb and tingling. I am thankful for this site and am glad that I found it. If anybody has found anything that makes this better please write and contact me. I am glad I am not alone.
Lisa <LisaE0608@aol.com>
phila, pa USA - Friday, August 11, 2000 at 20:27:11 (PDT)

well, i tried trileptol and it didn't work. i see that many of you don't experiment with tegretol and find out what dose will work for you...that's what i have done, and i know what my pain is not the dr. so he lets me be in charge of how much. also don't be fooled into thinking that surgery will work..it's only temporary at best and pain comes back. dr. told me surgery can't possibly work because you can't even get to where the pain is..did you know that?? don't go for surgery, and don't go for any other quackery...you'll be sorry you started. keep experimenting and know what works for you...good luck to all...beth.johnstone@juno.com
beth johnstone <beth.johnstone@juno.com>
houston, tx USA - Friday, August 11, 2000 at 16:00:54 (PDT)

Great site,thanks for taking the time to help us all.Kindest regards -Thea Schlosser-founder,www.miscwanted.com-Author"BEYOND THE DARK CLOUD"-CFIDS-WOULD YOU LIKE TO SELL MY BOOK?IM ALSO THE PUBLISHER-FIRST ED.SECOND ED.1BOOKS.I HAVE A SPECIAL,CLEARING OUT MY FIRST ED.FOR A 50%discount.regular $19.95 plus shipping.All my best to you.Thea Schlosser
Thea Schlosser <cfidsmedia@aol.com>
camarillo, ca USA - Friday, August 11, 2000 at 06:35:04 (PDT)

Hi, i signed up a few days ago, and contacted a woman but everytime i try to type in her e-mail i am told no matches found
april gougeon
USA - Thursday, August 10, 2000 at 21:42:04 (PDT)

I was just told i have tmj. I have been in pain for 6 months. My doctors first thought it was sinus. I finally was sent to a neurologist and he was the one who found my problem. I am in pain all the time. My place of work doesn't think this should affect my work but it does. Has anyone else had this problem with there work place. my doctor has put me on disability for the time being until we can get the medication doses right.
linda zawadzki <mommyzowie1@aol.com>
arcade, ny USA - Thursday, August 10, 2000 at 11:46:32 (PDT)

I cannot even begin to tell you how greatful I am to have found your page. I am a 21 year old student who has been dealing with chronic (2 years now and going strong!) atypical facial pain. Most of you have TN, and I know it's not the same, but this is the closest I've got to people who understand my pain. After two years of doctors doubting me and sending me in circles, I have finally found resources like this on the internet and will be attending a pain clinic in my area. I believe that we will all agree that doctors need to treat our symptoms and concerns with more respect than they do. If anyone out there is also, or has suffered from ATFP, please contact me and let me know how you've handled the pain. I used to be on Zoloft and Neurontin, but I'm such a tiny person that the medication was too much for my body to take. I got all the side effects and none of the benefits! Anyways, if anyone has any info on surgeries or safe medications, please email me. Great site! We need MORE like them! Best wishes for good health for all of you.
Amy Huffman <bloodycake@hotmail.com>
Toronto, Canada - Wednesday, August 09, 2000 at 12:29:58 (PDT)

I was diagnosed with fibro myalgia five and a half years ago. Looking for more info or personal success.. I was taking celebrex 200mg. Now trying Vioxx 25mg. Has anyone heard of Fibro Fogg? Thanks! Great resource site!
Rena Shook <rcshook@greenapple.com>
Ohio USA - Tuesday, August 08, 2000 at 21:54:02 (PDT)

would like to sign in guestbook. i would like to talk with people like myself who have been dealing w/chronic pain
april gougeon <rgougeon@mediaone.net>
ma USA - Tuesday, August 08, 2000 at 21:00:33 (PDT)

I am a 38 year old TN victim. I was diagnosed 2 years ago but had suffered facial pain probably 2 years before that. I was given Tegretol which helped temporarily. After a couple of months I had to increase the dossage because of breakthrough pain. I continually increased my dosage every month or so because the pain kept rearing its ugly head. After several months of this, my doctor also prescribed large doses of Neurontin which also helped but only temporarily. After the side effects from Tegretol became too great, I opted for the Microvascular operation and have been pain free for over a year. However, last week I went jogging and the pain returned in a very muted form for several days. Not any stabbing pains like before, but more an achy pain. It has now dissapated althoghter (Thank God!)One person wrote asking if jarring movements such as jump ropping bring on pain. In my experience - yes. No more jogging for me! Another interesting fact about my history....both my mother and her twin sister have suffered from TN for years. They have both had the Microvascular operation (my aunt on both sides) and have good success. It is so encouraging to have all of this info on the internet. When I was experiencing severe pain, I could not find anything! Not on the web,not in bookstores, nothing!Everything was written to doctors, for doctors. We definately need to get the word out! There are too many people suffering in excrutiating pain. A documentary on 20/20 would be awesome. Anybody have an address or E-mail that we can bombard these people with? What better way to get the national attention about this horrid disease. With information, we have power!
Kay James <bjames6492@aol.com>
Preston, wa USA - Tuesday, August 08, 2000 at 10:21:44 (PDT)

I have been suffering with TN for 30 years and have only been diagnosed since Oct99. After reading the other peoples letters I see that I am not alone. Most doctors that I have consulted in SA have considered me to be neorotic and my pain to be nothing more than my imagination. The extent of the pain as described by other sufferers is so great, I do wonder why I have been ignored by all the doctors that I have asked for help. Thank you all for all the letters. I may not be free of pain, but at least I know I am not alone or insane. Since Oct99 I have been taking Degranol (Carbamazepine) which is a anticonvulsant drug. It is not working anymore and I have now been in increasing pain for the past week. I have tried Tregretol but the side affects are too bad. I am on a dosage of 600mg of carbamazepine per day. Please could you advise if I can increase the dose or if there is any alternative. As I mentioned, it took 30 years before I was taken seriously. I do not want to spend another 30 years looking for help and advice. The attacks of pain are irregular, for eg. the last one was in Oct99. The attacks seem to be brought on by physical strain i.e. lifting heavy objects or excessive hours on the keyboard. Please advise
Anne van lingen <annevl@netactive.co.za>
Johannesburg, SA - Saturday, August 05, 2000 at 12:07:15 (PDT)

I a, looking for darvoset,vicodin es, hydrocodne,ocycontin,and percoset can anyone help me
mike shatto <msindentr@igatewat.com>
etters, pa USA - Wednesday, August 02, 2000 at 18:51:03 (PDT)

I a, looking for darvoset,vicodin es, hydrocodne,ocycontin,and percoset can anyone help me
mike shatto <msindentr@igatewat.com>
etters, pa USA - Wednesday, August 02, 2000 at 18:51:02 (PDT)

I a, looking for drvoset,vicodin es, hydrocodne,ocycontin,and percoset can anyon ehelp me
mike shatto <msindentr@igatewat.com>
etters, pa USA - Wednesday, August 02, 2000 at 18:50:28 (PDT)

how is this problem treated? isit premanet? does it create a disabilty ? what causes this problem ? i have never heard of it before. thanks for any help barb
barbaraeberth <beberth@webtv.net>
eugene , or USA - Tuesday, August 01, 2000 at 22:19:59 (PDT)

I am nearly speechless as I read through all of your comments. My mother has TN. How long she has been suffering, I do not know. She has spoken of it off and on over the past six months perhaps. She mentions that she is on medication. When I ask her just what her problem is, she doesn't really know, she just tells me somewhat what her doctor tells her. I was so foolish because I just assumed that some dentistry, surgery, or medication would cure it. I would say, "Can't they operate? They have to be able to do something to stop the pain!", and then I would forget about it. She doesn't talk about it too much. Off and on, I see her wince with pain. I finally asked her to write down the name of her problem. After a few days, I decided to look it up on the Internet, expecting to find a simple defintion and some form of therapy. I am overwhelmed. I am ashamed. I had no idea how much pain she was in. I sit here, and I read your comments, and I cannot help but cry. My mother is 60 years old and not very computer literate. I will do everything I can to keep her informed. Although I do not know what her pain feels like, I have an idea through your descriptions. I want her to know she is not alone. I thank you for sharing your thoughts, for creating this website, and for opening my eyes.
Kimberly Mitchell
FL USA - Friday, July 28, 2000 at 17:10:30 (PDT)

I was diagnosed with TN in 1987, one doctor told me he wouldn't recommend the Vascular operation for his dog. However, after two years of pain and every medication available, the only thing that helped was about 12 martinis. Realizing this couldn't go on, I opted for the operation in 1989. This left me with partial numbness but no pain! In 1996, old TN reared it's head again but this time on other side of face. To date, only minor pain occassionaly, but rest assured this old girl will have another operation when pain is severe. I HIGHLY recommend this operation instead of suffering.Look how many of you are still in pain while taking medication!!!I was scared to death just like many of you are; noone wants to have their head cut open but what kind of life are you living??? You owe it to yourself and your family.Please consider this choice. I also believe stress plays a great part in attacks. To date though I haven't heard any physcians mention this. Any input on this thought? Also, has anyone out there had it come back on different side of face? Another thing, keep a daily diary, it will keep you humble when you are pain free.My best to you all and hang in there.... Pat
Pat Kelly <pk1313@gulftel.com>
orange beach, AL USA - Friday, July 28, 2000 at 00:05:45 (PDT)

It has been two weeks today since my radiofrequency procedure and I am overjoyed to say so far I am pain free. Well Tn pain free. It has been a long long time for me. 7 years almost 8. With any luck this will last. My MVD results only lasted 2 months. Could use some positive energy sent my way. Thanks!!!
Brenna <Divahbee@yahoo.com>
Sarasota, Fl USA - Thursday, July 27, 2000 at 22:16:21 (PDT)

I was first diagnosed with TN about 1988. In '93 the "electric" pain was no longer spasmodic, but some attacks were of a frighteningly long duration (non-stop for several hours) I had an emergency infra-orbital nerve avulsion. The predicted facial numbness turned out to be a constant nagging burning sensation, which I apparently have to endure for the rest of my life. Now the nerve has re-generated and the "electric" pains have started again. My neuro tells me that it is not uncommon for a sufferer to undergo several of these avulsion ops! I would love to hear from anyone who has had one or more of these, especially those who were left with what is apparently "anaesthesia dolorosa". I am so pleased to have found this site, as there appears to be little help for TN sufferers in New Zealand, although I do know there are quite a few of them. As many of you have said, the pain is just unbelievable, especially to those who have not experienced it for themselves.
Rod <arrwalford@clear.net.nz>
Auckland, New Zealand - Wednesday, July 26, 2000 at 04:17:16 (PDT)

Had severe case of flu in Jan. 2000. Felt as if I never recovered. Sinus infection in April, June 8 had sensation of drops going in ear for 1 week. Stinging and pulling sensation all over face. Pain and numbness stays in mouth even on medication. DR. did MRI and Sinus films. Gave me an unlimited RX to neurontin 300 mg. 3x per day. Going to try postive thinking and teaching my mind not to "feel" the pain. Anyone who has any info. on overcoming the pain, please help me. This is such a terrible thing to happen to my children. I have a hard time being active in all they do.
Janice Hastings <Hastingsbusy@aol.com>
AL USA - Monday, July 24, 2000 at 22:13:05 (PDT)

I have been looking in the internet to fine out what I have wrong with me, the closes subject that I have found is TN which stands for Trigeminal Neuralgia but I have the same symptons all over my body not just the face. I have Kaiser INSur and it's been two years since first time to the doctors It all started with a heraniti disc between C5 and C6. its been over two years then shortly after the pain like pens and needles, started (tics), electric zaps, some times the pain feels like it's burning my skin. lately I have been feeling cramps in my hands, arms, feet and legs. If any information please infor me at wilsonjj@ftscpac.navy.mil thank you. JJ Wilson PS THE BURNING AND THE CONSTANT ZAPS IS WHAT WE ALL WISH TO GO AWAY OR HAVE A DOC GET REED OF.
jj wilson <WILSONJJ@FTSCPAC.NAVY.MIL>
spring valley, ca USA - Friday, July 21, 2000 at 15:37:52 (PDT)

I have had TN since 1984. Recently the spasms have started to recurring on a daily basis. I have recently had a MRI and MRA. The tests are inconclusive. I'm just tired of the pain.
Martie Gimm <mgimm@webtv.net>
Huntsville, AL USA - Friday, July 21, 2000 at 12:45:35 (PDT)

Hi Rhonda, I am so sorry that it has taken me so long today to write back. I had a problem with the computer and had to wait for me husband to get home to have a look at it. I am going to send you an e-mail as well, but I thought I would pop this into the "guestbook" in case anyone else was curious. I have my own good news. After seeing the neurosurgeon today I have an appointment for the MVD procedure as well and it is for next Tuesday, July 25th. I was surprised to get in so fast, but it is for the best. Now, I hope that you can get some rest tonight and just remember that everything will be alright. I feel very good about both of our situations. God bless and good luck.
Suzanne
Brampton, ON Canada - Wednesday, July 19, 2000 at 20:20:08 (PDT)

Hello Suzanne, Oh my where do I start. I am about 3 hrs from where the MVD is being done and the recovery time is about 2 days in the hospital is everything goes ok. The decision was not hard at all considering all the medications, the weight gain and being tired all the time as well as the pain. There is a 95% cure rate and the procedure it self takes about 5 hrs. Long time huh, but the wait is worth it. I'm not sure if I will beable to check my mail or come back here until after I am home but will let you know as soon as I can all about it. You are more then welcome to email me as soon as you can. Thank you for your prayers and I hope all goes well with you also.
Rhonda <angel_35_63_99@hotmail.com>
Pa USA - Wednesday, July 19, 2000 at 12:47:41 (PDT)

Hi Rhonda, it was wonderful and encouraging to "hear" from you when I logged on tonight. Thank you for that. I will try to e-mail you in the morning, but I am having a problem with it right now. This is a strange co-incidence, however, I believe it is more like fate that you sent your message when you did, but I am going to see a neurosurgeon tomorrow about the MVD procedure and will hopefully come out of there with a date set. I have purchased the book "Striking Back- The Trigeminal Neuralgia Handbook" and it has been a wealth of information. I really feel this is the answer to my prayers and I hope for yours to. Do you know how long you will have to stay in the hospital? Is it far from your home? What is the expected time frame for recovery? I suppose that will all depend. How do you feel now that you have decided to have this done? Are you at peace with your decision? Was it hard to make? If you would rather not go into all of this before the surgery I understand. I will try to send off an e-mail in the morning, but remember to think positive thoughts. If I can't get through via e-mail I will be back through here. My prayers are with you and your family Rhonda. God bless
Suzanne
Brampton, ON Canada - Tuesday, July 18, 2000 at 23:41:31 (PDT)

Hi. Don't know what I have....But the pain gets to me! Some call it Atypical facial pain, some say NICO. Have the shooting pain so some now call it Atypical Trigeminal Neuralgia. Get a burning inflammation pain in left side of face, left quad/in jaw, in left ear. Red burning on face and swelling. Shooting pain on occasions. spasms re the left eye lid, and I get stiffness in the left side of my neck. All began after my wisdom teeth were extracted surgically late 1989=10 years ago. left lower w-tooth was infected pre surgery. Now I wonder about RSD.=REFLEX SYMPATHETIC DYSTROPHY. ........Anyone else have all these symptoms?.
Sandie Carlin <sandiec@zfree.co.nz>
Palmerston North, New Zealand - Tuesday, July 18, 2000 at 18:12:34 (PDT)

Sorry for all the messages my puter froze and I didnt think they took.....TY
Rhonda <angel_35_63_99@hotmail.com>
Pa USA - Monday, July 17, 2000 at 13:22:16 (PDT)

Hello, Suzanne I am having the MVD on July 20th. I know somewhat about the procedure. I am willing to help all I can. You can email me and ill answer ASAP. God Bless
Rhonda <angel_35_63_99@hotmail.com>
Pa USA - Monday, July 17, 2000 at 13:16:38 (PDT)

Hello, Suzanne I am having the MVD on July 20th. I know somewhat about the procedure. I am willing to help all I can. You can email me and ill answer ASAP. God Bless
Rhonda <angel_35_63_99@hotmail.com>
Pa USA - Monday, July 17, 2000 at 13:16:14 (PDT)

Hello, Suzanne I am having the MVD on July 20th. I know somewhat about the procedure. I am willing to help all I can. You can email me and ill answer ASAP. God Bless
Rhonda <angel_35_63_99@hotmail.com>
Pa USA - Monday, July 17, 2000 at 13:15:48 (PDT)

Hello, Suzanne I am having the MVD on July 20th. I know somewhat about the procedure. I am willing to help all I can. You can email me and ill answer ASAP. God Bless
Rhonda <angel_35_63_99@hotmail.com>
Pa USA - Monday, July 17, 2000 at 13:15:38 (PDT)

Hello, Suzanne I am having the MVD on July 20th. I know somewhat about the procedure. I am willing to help all I can. You can email me and ill answer ASAP. God Bless
Rhonda <angel_35_63_99@hotmail.com>
Pa USA - Monday, July 17, 2000 at 13:15:33 (PDT)

Hello, Suzanne I am having the MVD on July 20th. I know somewhat about the procedure. I am willing to help all I can. You can email me and ill answer ASAP. God Bless
Rhonda <angel_35_63_99@hotmail.com>
Pa USA - Monday, July 17, 2000 at 13:15:21 (PDT)

Hello, Suzanne I am having the MVD on July 20th. I know somewhat about the procedure. I am willing to help all I can. You can email me and ill answer ASAP. God Bless
Rhonda <angel_35_63_99@hotmail.com>
Pa USA - Monday, July 17, 2000 at 13:15:16 (PDT)

Hello, Suzanne I am having the MVD on July 20th. I know somewhat about the procedure. I am willing to help all I can. You can email me and ill answer ASAP. God Bless
Rhonda <angel_35_63_99@hotmail.com>
Pa USA - Monday, July 17, 2000 at 13:14:45 (PDT)

Hello, Suzanne I am having the MVD on July 20th. I know somewhat about the procedure. I am willing to help all I can. You can email me and ill answer ASAP. God Bless
Rhonda <angel_35_63_99@hotmail.com>
Pa USA - Monday, July 17, 2000 at 13:14:32 (PDT)

Hi, Suzanne I am havin MVD on July 20th in Baltimore,Maryland. I do know somewhat about the procedure and the cure rate is 95% effective in most cases. I am willing to help all I can. Thanks and God Bless
Rhonda <angel_35_63_99@hotmail.com>
Pa USA - Monday, July 17, 2000 at 13:12:08 (PDT)

Hi, Suzanne I am havin MVD on July 20th in Baltimore,Maryland. I do know somewhat about the procedure and the cure rate is 95% effective in most cases. I am willing to help all I can. Thanks and God Bless
Rhonda <angel_35_63_99@hotmail.com>
Pa USA - Monday, July 17, 2000 at 13:11:33 (PDT)

Hi, Suzanne I am havin MVD on July 20th in Baltimore,Maryland. I do know somewhat about the procedure and the cure rate is 95% effective in most cases. I am willing to help all I can. Thanks and God Bless
Rhonda <angel_35_63_99@hotmail.com>
Pa USA - Monday, July 17, 2000 at 13:11:07 (PDT)

Hi, Suzanne I am havin MVD on July 20th in Baltimore,Maryland. I do know somewhat about the procedure and the cure rate is 95% effective in most cases. I am willing to help all I can. Thanks and God Bless
Rhonda <angel_35_63_99@hotmail.com>
Pa USA - Monday, July 17, 2000 at 13:10:50 (PDT)

Ms. Gunther...Hi ...On July 20th I am havin the Microvascular Decompression Surgery in Baltimore, Maryland. I am willing to give u information on the procedure. I do now that the cure rate is 95% effect in most cases. I have had TN for 2 yrs and medications raised all the time. I am willing to help anyone with information that I can...God Bless
Rhonda <angel_35_63_99@hotmail.com>
Pa USA - Monday, July 17, 2000 at 13:06:33 (PDT)

I have had TN for about 2 yrs. My medications was being raised everytime I went to see my Neurologist. I am currently taken 2400mg a day of Neurontin, 500mg of Naproxen and Hydroco 1000mg a day. I am tired of all the medications and Thursday I am havin the Microvascular Decompression Surgery in Baltimore, Maryland. They recommanded that procedure because of my age being young still and also the cure rate is 95%. I will evenually have to be slowly takin off all my medications but anything at this point is worth the try. If anyone would like info about the procedure or the hospital in Balitmore i will be willing to help as much as i can. Thanks you and God Bless anyone of there family members going through this terrible pain.
Rhonda <angel_35_63_99@hotmail.com>
Pa USA - Monday, July 17, 2000 at 12:56:28 (PDT)

I have had TN for about 2 yrs. My medications was being raised everytime I went to see my Neurologist. I am currently taken 2400mg a day of Neurontin, 500mg of Naproxen and Hydroco 1000mg a day. I am tired of all the medications and Thursday I am havin the Microvascular Decompression Surgery in Baltimore, Maryland. They recommanded that procedure because of my age being young still and also the cure rate is 95%. I will evenually have to be slowly takin off all my medications but anything at this point is worth the try. If anyone would like info about the procedure or the hospital in Balitmore i will be willing to help as much as i can. Thanks you and God Bless anyone of there family members going through this terrible pain.
Rhonda <angel_35_63_99@hotmail.com>
Pa USA - Monday, July 17, 2000 at 12:55:54 (PDT)

Hi again, I agree with Ms Gunther that 20/20 should do a show about TN and other facial neuralgias. Maybe we should collectively bombard them with letters and e-mails suggesting this because that is really the only way they will know there is a need. There was a question about Topamax. I to am on Topamax and have been for just over a year. When I was first put on it I was told that it was a "test" drug usually used for epilepsy. My doctor said that if it worked for TN we would be making medical history. I guess I know now that he was joking, however the Topamax did eventually work. We had to play around with the dosage until I was taking 300mgs in the morning and 300mgs at night. That lasted for almost seven months before I had a reocurrence and then my doctor started to play with my dosage again. I had wonderful side effects to, but I think that everyone can have slightly different experiences when it comes to the side effects, just like when it comes to how the drugs react. I am highly allergic to Tegretol and will never be able to take it again. It almost killed me the first time around. But anyway, that's how it goes. The Topamax worked well for awhile and I was happy with it, but unfortunately it was not enough. I have a parting question for you late-nighters, is there anyone in their mid twenties to late thirties who has TN? What are your experiences? Have any of you had the MVD surgery? Thanks again everyone and God bless, Suz
Suzanne
Brampton, ON Canada - Thursday, July 13, 2000 at 23:25:39 (PDT)

My mother has been suffering with TN for the past 20 years, one of my sisters the past 6 years. My mother had the gamma knife procedure on June 20, 2000. She has had some pain but not like before. Why dosen't 20/20 do a special on TN? It would probably help a lot of sufferers.
Elizabeth Gunther
ELLICOTT, MD USA - Thursday, July 13, 2000 at 14:19:06 (PDT)

Thank you for all the information. I have been dealing with TN for 8 years. Actually, I had three years of one test after another (including one of my teeth that they thought was causing the pain.) I tried all of the recommened medication and nothing worked. I even had TWO rounds of Gamma Knife Radiosurgery by the top doctor in the south. He the surgery had nothing to do with the increase of my pain. My doctor told me to never see the doctor again. He tried some new medication that I have not seen mentioned. The first is Topamax and it worked realy well for about 9 months. One of the big side effects is weight loss from lack of appitite. The second medication he is trying on me is called Lamictal. I take two 100 mg twice a day. It seems to be working. I do have a seperate pain medication oxicatine-not sure of spelling-) and this seels to help. I have only been on this amount of dosage for 3 weeks, but they have been good ones. Good luck to everyone!
L Branham <LSBranham@netscape.net>
Atlanta, GA USA - Thursday, July 13, 2000 at 13:43:43 (PDT)

Correction from my previous entry.......e-mail address is Bandells@aol.com........I had failed to add the 's' to Bandell......Thanks again....Pat Bandell
Pat Bandell <Bandells@aol.com>
USA - Thursday, July 13, 2000 at 10:07:37 (PDT)

As a fellow TN sufferer, your guest book, web page and numerous entries from others has been an uplifting discovery. Thanks......will be writing more in the future...Pat Bandell
Pat Bandellw <Bandell@aol.com>
Baltimore, MD USA - Thursday, July 13, 2000 at 10:03:44 (PDT)

Hi, I'm a 44 year old female with a husband, 2 teen-agers, a dog and a 6 month old kitten. I have had 3 tmj surgeries in three years. I have suffered with it for 11 years but tried everything else first. Some of that caused for me to have surgery! I have been diagnosed with fibromyalgia, RSD, and and now TN. I went to a neurologist a long way from home, just like the tmj surgeries(which insurance didn't cover!) He said I had RSD and treated me with trigger point injections, change of diet, exercise etc. Felt wonderful for 5 months. Best I had felt in years. Went the second time and it was not as affective due to cold weather climate. I now am going to a pain clinic close to home and just had my first round of treatments last Monday and Friday. I'm to go back Wednesday but I'm not sure. I have never been in so much pain!! Nothing like my first treatments. I'm even black and blue!! Any advice would be helpful. My medical history is 30 pages long so this is the shortened version of it:) Really don't know where to turn. Hi did mention a gangolin block once, duing it in my neck? Any support would be great as after 11 years a lot of my friends and family are sick and tired about hearing how sick and tired I am;) Thanks and God Bless
Tina Webb <jtwebb@valu-line.com>
USA - Monday, July 10, 2000 at 20:58:01 (PDT)

I was diagnosed with TN this past March. I am on 2400mg of Neurontin. It doesn't seem to be doing much. Still have horrible bouts of pain. Would be very interested to find others in Michigan with this condition. If anyone needs a friend or just a shoulder to cry on, please feel free to e-mail me anytime.
Maureen Orlandino <Mo728@aol.com>
Mt. Clemens, Mi USA - Monday, July 10, 2000 at 12:35:14 (PDT)

Just wanted to know there are others out there who understand what I have been through- 2 years of pain and drugs prior to surgery.
Lynda Cooper <lynfco@aol.com>
AR USA - Sunday, July 09, 2000 at 23:50:51 (PDT)

Hi to everyone! I wanted to respond to Brenda's question about using hot or cold compresses during an attack. Of course this is only speaking from personal experience. I found that they never worked for me and that they only made my pain worse. I have used cold compresses in the past for headaches and would leave one on for several hours if it was working, but the couple of times I tried one with the TN pain it would intensify in a matter of minutes. So I have stayed away from using the compresses altogther. As for the the dentist situation, I think you should dicuss that with your primary doctor. Are you seeing a neurologist? Personally I have a huge fear of the dentist anyway (!!), but now it is even that mucher harder to believe it will be a happy and pain free visit. So why put yourself through that. I have not heard anything about white fillings or otherwise and I ran the gambet of dental x-rays several times now with my regular dentist and an oral surgeon. I have had TN for just over a year now and am currently in the midst of a bad reoccurrence. It has lasted for five months and my neurologist has told me that I am at the end of the line as far as drug options are concerned. I feel like I am at the end of my rope some times, but then I will have a good day. My neurologist says I am too young to have the surgeries that are available, but we will see. I am going to a pain specialist within the next little while and apparently he is the best in Canada. Has anyone heard of him? Dr Peter Watson? I just hope he can help me. Well, if he has helped anyone out there I would sure appreciate knowing. Thanks for "listening" to me prattle on. Sleep tight everyone and may God bless us all.
Suzanne
Brampton, ON Canada - Sunday, July 09, 2000 at 22:02:32 (PDT)

I, also have TN but, I have been very lucky with it from family and doctors. I have been on many different medication and no relief from the pain. I have had surgeries MVD and Gamma Knive and still no relief til Feb. of 1999 and had a spinal cord stimulator inplanted and this has helped with the pain. This is the best thing that has ever happen to me. I hope that people that suffer with TN is as lucky as I am.
rose jalette <RJale35292@msn.com>
manville, ri USA - Saturday, July 08, 2000 at 18:40:50 (PDT)

I have a friend who has been pushing a Chiropracter on me since I have been diagnosed with TN. I have never seen that word on this forum and am very sceptical. In the first place, I don't believe in chiropractery. Any feed back to get her off my back (or support her recommendations) will be appreciated. To all my friends out there who have been following up with me...this "jaw thing" may actually be a broken jaw. I went to dentist yesterday and he retook exrays but slanted the film in my mouth. It revealed a small crack. Am going to oral surgeon this afternoon. Will keep you all posted. Thanks to all. May God Bless Us. dsh
Darlene Heacock <Domino45@mi.freei.net>
Davisburg, MI USA - Friday, July 07, 2000 at 05:03:25 (PDT)

It's comforting to know I am not the only sufferer. I have had cranial & facial electric shocks for 13 years. I know it is a neurlogical disorder but I live in an area where the doctors just think I'm neurotic. Any advise will help.
Mim McKew <whitapts@tpg.com.au>
QLD Australia - Thursday, July 06, 2000 at 12:13:32 (PDT)

Hey there, I am about to have one of the radiofrequency procedures, the one that starts behind the ganglion of the nerve so it will not regenerate and heal itself. Has anyone else had this and if so how long did it last? I had an MVD surgery already and it only lasted for 2 months. If this does not work I am going to have the nerve cut. Facial numbness or not. I would appreciate hearing from anyone who needs to talk about their illness, I am a good listener. Thanks. God bless.
Brenna <divahbee@yahoo.com>
Sarasota, Fl USA - Tuesday, July 04, 2000 at 10:03:46 (PDT)

I wondered if anyone has info on diet controlled TN. I have been on Tegretol for 12 years, with some good times and lately mostly a lot of pain. I'm looking for some alternative methods but have not had much luck. I hope to hear from some of you. Wanda
Wanda Khouri <khouri@zim.com>
Pembroke Pines, FL USA - Monday, July 03, 2000 at 20:21:35 (PDT)

I had TN 6 years ago and I am a whole person again, thanks to Peter Jennetta. Anyone who needs to talk about it, I will be there for you. Pat
Patricia Galbraith <patdanakim>
Brewster, ny USA - Friday, June 30, 2000 at 20:09:09 (PDT)

Does anyone know of a connection between diffuse scleroderma/CREST and TN - I have been told I have a neuropathy, not just a neuralgia - and, boy, is that ever the truth. My neuropathy was one-sided at first, starting on the right about four months ago, but it has not progressed over to the left side of my face. My rheumatologist found a "blurb" in one of his medical journals stating that there have been about 400 cases reported where scleroderma is suspected of causing BILATERAL trigeminal neuropathy. Oh, help. Facial pain on one side of my face is bad enough, but I don't know how I will handle it on both sides. Tegretol, Neurontin, Baclofen, Vicodin, Midol, Advil, stubbing my toe to divert the pain... nothing has helped. Only the come down from the crescendo of pain (which last for about three to four days) is what gives me any relief and a chance to close my eyes and sortuv rest. I would like to hear from anyone - even a doctor would be nice - if there is any info on scleroderma and TNeuropathy. Thanks.
Judy Harrison <typist@flash.net>
Elmhurst, IL USA - Wednesday, June 28, 2000 at 20:30:20 (PDT)

I meant to ask.....does hot or cold compresses help anyone?.....I found that if I take Ibuprofen and put a hot compress on my face it helps some....also it is interesting that someone mentioned a white filling that they had.....it seems I had a white filling put in that side of my mouth right around the time this neuralsia started? I wonder if it would help now to have the filling removed?...I can't even imagine going to a dentist at this point with my face in such pain. If my face isn't in pain I do not want to go to the dentist and trigger any pain. Also I too was denied Long term disability by The Hartford Insurance Company due to my condition...very aggrevating.....-b-
Brenda <sayit@meganet.net>
ma USA - Tuesday, June 27, 2000 at 20:17:17 (PDT)

Have been on 400mg of tegretol since Oct '99 and have had great success, that is, unless I miss a dose which sends me into a dibilitating four to five day torture chamber of facial pain. It is unreal and unless anyone has experienced it they cannot believe it could be that bad. It is horrendous! This past Friday I accidently missed my morning 200mg and took the evening 200mg plus at 11pm took an additional 200mg I thought this would get me back on track but no, by Sunday it was an all out attack and it is now tuesday and I am still writhing in pain.....spoke to Doctor's nurse who had blood drawn and the levels were therapeutic so now what? I've missed one and a half days of work and am not too sure I will be able to stand going to work even tomorrow...very discouraging! I take a B12 vitamin everyday....maybe I need to up the dose or change my meds or someone even suggested anger/assertiveness training...maybe I need that as well! Any ideas....-b-
Brenda Reed <sayit@meganet.net>
MA USA - Tuesday, June 27, 2000 at 19:47:15 (PDT)

Found out I have Trigeminal neruagia last year. Just went on tegratol, seems to be working.
C. Lane Walburger
Pima , Az USA - Tuesday, June 27, 2000 at 16:52:09 (PDT)

Is there any forewarning that an attack will occur? The attacks I have recently had really render me useless. I an instructor at a community college and fear it will happen in class. It's not a pretty sight. How do you cope in public if an attack occurs?
Jan Lauten <lauten@inteliport.com>
NC USA - Monday, June 26, 2000 at 20:56:36 (PDT)

Hi! My Name is Judy, having problems with my eyes due to facial nerve and a vein broke on the side of my face on the left noone has any answers for me having some twitching in my eyes I told the dr's I have Hemifacial, they say no. Help!
Judy Ann Juliano <Judyj519@aol.com>
Tarpon Springs, Fl USA - Monday, June 26, 2000 at 07:03:40 (PDT)

I read your article.....and I am one of those ppl athat have been hurting also..and have been told I have TMJ.... this that and the other.....nice to know I am not alone..
Susan Garcia-Gines <suessin@zdnetmail.com>
Toa Baja, PR USA - Sunday, June 25, 2000 at 17:22:50 (PDT)

I read your article.....and I am one of those ppl athat have been hurting also..and have been told I have TMJ.... this that and the other.....nice to know I am not alone..
Susan Garcia-Gines <suessin@zdnetmail.com>
Toa Baja, PR USA - Sunday, June 25, 2000 at 17:22:29 (PDT)

just started taking new medication trileptal last night..still no pain...took another dose this morning and so far so good...was on tegretol....this is my third bout with geniculate neuralgia...first one in '84 sure hope this keeps on working....has fewer side effects.
beth johnstone <beth.johnstone@juno.com>
houston, tx USA - Thursday, June 22, 2000 at 10:23:21 (PDT)

DIAGNOSED WITH TRIGEMINAL NEURALGIA A MONTH AGO TEGRETOL IS NOT HELPING EXCEPT TO MAKE ME DIZZY. WHAT HAS BEEN THE EXPERIENCE OF OTHERS AND WHEN SHOULD ONE CONSIDER SURGERY THANKS
ROBERT BAYEWITCH <ROBBI52@ALO.COM>
BELLMORE , NY USA - Wednesday, June 21, 2000 at 12:35:34 (PDT)

Hello. I have had trigeminal neuralgia for 4 yrs now and I live my life in fear of it attacking me again. I am glad to find a support group for this condition and that I am not alone. I am on Tegretol right now, I was on Neurontin but I am unable to afford it right now. I would like to talk to anyone with this condition and know how you cope with it. When it hits me I usually cannot eat, drink, talk or even at times just moving my tongue sets it off. Sometimes it lasts for days or weeks. In my worse attacks I have thought of suicide just to escape the pain but have stayed strong by the grace of God and a lot of prayers, mostly my own. Please write me, I need to talk to someone who understands this horrible pain.
Donna Byler <DBDojeby@aol.com>
Houston, Tx USA - Sunday, June 18, 2000 at 17:35:39 (PDT)

Hello! I have Occipital Neuralgia and wish to correspond with others who have this too. I'm looking for information on what is the best treatment and what has worked and not worked for this.
Barbara Adams <barbara_adams@aici.com>
Cincinnati, OH USA - Friday, June 16, 2000 at 14:28:51 (PDT)

I need help, I have had a terrible pain in my teeth, it started first with a neck pain, now it is my teeth, bottom, I went to the dentist, he said he can not find anything wrong, says all looks well, I had six months ago a root canal done, I have a cap over the tooth, It is killing me, along with the teeth beside it, The dentist seems to look at me like I am nuts, says nothing seems wrong, except for plack, he has scheduled me for a cleaning. I just cannot stand the pain in my face on the right side, also my jaw hurts. At times the pain shoots through all of my teeth, Help does anyone think I might have this trigemnal neuralgia problem, what do you suggest. i will look back and see if anyone answers me, thanks
SarahViolet
New York, USA - Tuesday, June 13, 2000 at 18:37:19 (PDT)

A TN sufferer for 11 years. I've been told the medication will not last forever so I'm looking at options now. I notice that many of you have had success with Gamma Knife and MDV. What swayed you to the procedured you chose?
Steve Schmitz <violet@nwi.net>
Wenatchee, WA USA - Sunday, June 11, 2000 at 18:00:08 (PDT)

A TN sufferer for 11 years. I've been told the medication will not last forever so I'm looking at options now. I notice that many of you have had success with Gamma Knife and MDV. What swayed you to the procedured you chose?
Steve Schmitz <violet@nwi.net>
Wenatchee, WA USA - Sunday, June 11, 2000 at 17:59:52 (PDT)

A TN sufferer for 11 years. I've been told the medication will not last forever so I'm looking at options now. I notice that many of you have had success with Gamma Knife and MDV. What swayed you to the procedured you chose?
Steve Schmitz <violet@nwi.net>
Wenatchee, WA USA - Sunday, June 11, 2000 at 17:59:38 (PDT)

This is a first visit, but I will certainly be back. This guestbook is an amazing resource for everyone to keep in touch with other suffers and not feel alone. Thank you for that.
Suzanne
Brampton, ON, CAN - Wednesday, June 07, 2000 at 01:18:28 (PDT)

I had MVD surgery done 5 weeks ago. The surgery was successful. No TN pain so far. I woke up from surgery with Bell's Palsy (facial paralysis). I am thrilled to not have the severe TN pain. The Bell's Palsy is slowly resolving. My surgeon has assured me it will go away with time.
Brenda <csours@aol.com>
USA - Saturday, June 03, 2000 at 10:04:28 (PDT)

My father aged 58 who suffers from TN has recently undergone the MDV procedure (two months ago) and while the pain has gone from his lower jaw, he is still suffering from acute pain in his eye and cheekbone. The neurosurgeon has told him that the operation was "a complete success" and that the pain he is experiancing is "all in his mind". He is now seeing a psycologist who has him going for elecric shock treatments and on all sorts drugs. At this stage my father is so confused and is also talking about suicide. I know my father and know that he still has TN and that the operation was not a success. Please, please can someone help us ? Has anyone had the MDV procedure and it hasn't worked ? Also why wouldnt it have worked and what other options do we have ? Does he have to go through the operation again ?
Alison Stewart <astewart@iafrica.com>
Kloof, South Africa - Friday, June 02, 2000 at 04:57:07 (PDT)

My father aged 58 who suffers from TN has recently undergone the MDV procedure (two months ago) and while the pain has gone from his lower jaw, he is still suffering from acute pain in his eye and cheekbone. The neurosurgeon has told him that the operation was "a complete success" and that the pain he is experiancing is "all in his mind". He is now seeing a psycologist who has him going for elecric shock treatments and on all sorts drugs. At this stage my father is so confused and is also talking about suicide. I know my father and know that he still has TN and that the operation was not a success. Please, please can someone help us ? Has anyone had the MDV procedure and it hasn't worked ? Also why wouldnt it have worked and what other options do we have ? Does he have to go through the operation again ?
Alison Stewart <astewart@iafrica.com>
Kloof, South Africa - Friday, June 02, 2000 at 04:57:03 (PDT)

hi was recently diagnosed with tgn. On tegretol without relief pain is not unbearable lucky I guess although side effects arent the greatest. Any alternatives?
robert <robbi52@aol.com>
USA - Wednesday, May 31, 2000 at 06:23:32 (PDT)

hi was recently diagnosed with tgn. On tegretol without relief pain is not unbearable lucky I guess although side effects arent the greatest. Any alternatives?
robert <robbi52@aol.com>
USA - Wednesday, May 31, 2000 at 06:23:28 (PDT)

hi was recently diagnosed with tgn. On tegretol without relief pain is not unbearable lucky I guess although side effects arent the greatest. Any alternatives?
robert <robbi52@aol.com>
USA - Wednesday, May 31, 2000 at 06:23:26 (PDT)

hi was recently diagnosed with tgn. On tegretol without relief pain is not unbearable lucky I guess although side effects arent the greatest. Any alternatives?
robert <robbi52@aol.com>
USA - Wednesday, May 31, 2000 at 06:23:17 (PDT)

Would love to hear from patients who have been diagnosed with Glossophyngeal Neuralgia (9th. Cranial nerve) and or V3 division of the Trigeminal Nerve. Would like to know also if one has had surgery for glossophyngeal neuralgia and the outcome. Thanks, Joannie
Joannie <jmgerard@hotmail.com>
Houston, Tx USA - Tuesday, May 30, 2000 at 20:44:39 (PDT)

Around 3 weeks ago ,I picked up an ear infection, off to the doc ,followed by a course of antibiotics. 3 weeks on, and the ear though better, was still not 100%. Then 4 days ago, I developed what I considered to be toothache, which seemed to be getting worse. Last night I sat up all night unable to sleep, with intense pain, which would occasionally subside slightly, only to spasm back, shooting across and down the right hand side of my face, from my temple, under the eye, and down to my neck. Realising this could be more than toothache,as there was no specific "hotspot" and I could tap each tooth with no discomfort, I booked in to see my doctor, afternoon, but 1st I went to the dentist, who x-rayed, then inspected my teeth. He could find no problem. Speaking to my sister, she told my that she suffers from Tn, and described exactly what I was going through. After explaining my symptoms to the doc, she suggested that it could well be Tn, and has prescribed Tegretol. I wait in hope. Thinking back, over the past year, I've had occasional shooting pains over a period of time, and on one occasion, what I considered toothache,overnight, only for it to be fine next day, and a subsequent visit to the dentist proving fruitless. I've read, scanning through this guestbook, that Tn is one of the worst pains going. Should this be so, and what I have is not Tn, then I pray for you Ts suffers
Tony Else <tonyelse@btinternet.com>
Derby, UK - Friday, May 26, 2000 at 15:58:03 (PDT)

I had TN off and on for 3 years. Tegretol was able to contain most of the breakthrough pain. When I got to the point that the increased dosages of Tegretol was not being as effective as I wanted I opted for a Gamma Knife procedure. This was performed at Hoag Hospital, Newport Beach, CA 15 months ago. I have been pain (and medication) free ever since. If anyone would like more information on my experiences, please do not hesitate to contact me. -Bob
Bob Dudley <rdudleysr@yahoo.com>
Monarch Beach, CA USA - Friday, May 26, 2000 at 14:42:12 (PDT)

2nd time writting here. In terrible pain. Teg 800 mg dly. Neorontin gradually being increased to 3200 mg dly. Have abscess type condition on outside of jaw which makes TN worse (if you can imagine that). Dr. is pretty stumped. Any comments, helps will be appreciated. Thanks...darlene
Darlene Heacock <Domino45@mi.freei.net>
Davisburg, MI USA - Wednesday, May 24, 2000 at 06:26:23 (PDT)

I have a bad front upper tooth that is chipped--could that give me the pain and burning on cheek?
Lorraine <llor548@mailcity.com>
CT USA - Saturday, May 20, 2000 at 21:51:28 (PDT)

Im having MVD in july. For my TN. I would like to know if there is anything I should know the docters have not told me.
Jan Zook <jan.zook@grandronde.org>
Willimina, OR USA - Monday, May 15, 2000 at 13:53:40 (PDT)

Estimados amigos: Les escribo desde Chile,y quiero saludarlos y felicitarlos a todos, por la forma solidaria de enfrentar la Neuralgia del trigemino. Yo soy un abogado que conoce a dos mujeres de escasos recursos, que quedaron con NT, luego que concurrieron a un Hospital en Chile a sacarse una muela. El Hospital se defiende y ha señalado que es totalmente imposible que la NT hubiere ocurrido despues de ser atendidas en las exodoncias. En muchos paises subdesarrollados, es una costumbre esconder informacion sobre las verdaderas causas de las afecciones a la salud. Creo que a estas personas realmente les lesionaron alguna rama del trigemino al sacarles las muelas. Les ruego me ayuden con informacion, estadisticas, casos iguales o parecidos, información médica, y especialmente que me comenten sobre casos similares. En estos juicios la victima debe probarlo todo, y si asi no lo hace pierde el juicio. Mi domicilio es: Prat 827,oficina 802, Valparaiso, Chile, Sur America. Atentos saludos, Edgardo Reinoso
Edgardo Reinoso <ereinoso@justice.com>
Valparaiso, CHILEeSTIMADOS - Saturday, May 13, 2000 at 17:25:07 (PDT)

I have been recently diagosed with TN. I was started on tegretol and still having break thru attacks. I am miserable and this is controling my life. I never no when or why these attacks occur. I am seeking info. My dentist feels I have tmj not TN only thing I can say I wish he could see me after or during a attack. I am looking for ways to stop or manage the pain. The dentist says I need a root canal but I am afraid of this. My life has been changed and I am having trouble dealing with the pain.
Cheryl <cdwrn@aol.com>
USA - Tuesday, May 09, 2000 at 23:46:24 (PDT)

Hi Everyone: I just have to write and let you all know about a wonderful book that I picked up yesterday at Barnes N Noble. No you can't pick one up but you can order it thru them or the TN Society. It is called "Striking Back" The Trigeminal Neurolgia Handbook by George Weigel and Kenneth F Casey MD. It is so full of information that a wasted (well maybe not) a whole day just about because I couldn't put it down. I can't even begin to tell you the new stuff I read that I hadn't come across before. Really interesting. One think they did mention that I plan to try is Vitamin B 12-they didn't give micrograms specific to take because they said everyone was different but did say you can't overdose on it by taking too much. They have known people to take 100,000 micrograms. That seems like a lot. Anyway it sure won't hurt to try. Let me know if you do ok and how it turns out? Mary
Mary <Typomommh@aol.com>
St CLoud, Mn USA - Monday, May 08, 2000 at 16:20:54 (PDT)

I was just diagnosed in January with Trigeminal Neuralgia... Lucky me cuz I alrady have Fibromyalgia! Anyway, this pain is INTENSE! I can't go through the day without having to sit with my eyes closed completely still and wait til it passes. I was diagnosed by a local neurologist and he is gungho in making me feel better. MY pain is mostly in my eye and jaw. It has also spread to the other side. Lucky me again! He is trying everything right now so I am currently on 1800mg of Tegretol, 150mg of Elevil, and 60 mg of Baclofen. Le me tell you, I get up in the morning and I have to hold me hands to my body to get them to stop shaking. The side effects of the drugs are beginning to be worse that the proble to begin with. I have to drive real carefully to work since I feel lighheaded and dizzy 24/7. My hands shake out of control and I can't have a simpe conversation with anyone because words escape my lips like they have little wings. I have developed a slight stutter. The reason I am writing this is to ask anyone with more "experience" to let me know what they did, how they controlled it, and if they ever though of or had some sort of surgery to stop it. I am all ears at this point! Please write! Tric
Tricia <tclockli21@yahoo.com>
Negaunee, MI USA - Friday, May 05, 2000 at 21:07:25 (PDT)

WHY DONT WE GET A MAILING LIST GOING.IDE DO IT BUT I ALREADY RUN FIVE IF YOUR INTERESTED EMAIL ME AND LETS GET ONE GOING JIM DENNING
JIM DENNING <Caradoc28@aol.com>
HOLBROOK, MA USA - Monday, May 01, 2000 at 10:34:21 (PDT)

hello, my name is ryan and my mom has had TN for about 7-10 years . She didn't have an acfurate diagonisis for a long time and she suffered a lot. She has had alcohol injections (twice), the nerve cut once, and is on all the countless meds that you guys have to suffer through. I feel very bad for her, and powerlss to do anything. Her pain just began to start again and she had to get some demorol for the pain. I am 22 and she is 58. I am scared to get this disorder myself, and was curious if anyone has it in their immed. family. I have no pain, and am reletivfely healthy, even though sometimes I feel ill because I know she is going through the pain.Some people sais that the pain began w/dental procedures, and I have some sensitivity in my upper left molar (but not sharp thank god). Some of you also wrote that you felt that you had water in your ear before it began, I have a reocuring ear infection (*even though it never gets bad), but I contribute this to surfing every day. She says that hot things help, maybe she could use some of that hot pepper cream to help? If anyone has any information on anything that I afore mentioned, contact me. Thank all of you for being there for each other, there is strength in numbers.
Ryan <murdog78@hotmail.com>
daytona, fl USA - Sunday, April 30, 2000 at 18:12:25 (PDT)

I HAD TRIGEMINAL NEUR. FOR MONTHS PAIN ON THE RIGHT SIDE OF MY FACE, IT RAN FROM MY TEMPLE DOWN TO MY JAW .JUST LIKE A LOT OF YOU OUT THERE I WAS GOING THROUGH DENTAL WORK ALSO. I WENT TO THE EMERGENCY ROOM CAUSE I COULD NOT STAND THE PAIN ANY MORE. THEY TOLD ME I HAD TN I THEN HAD TO GO TO A NEUROLOGYST AND HE SENT ME FOR AN MRI HE SAID I DO HAVE TRIGEMINAL NEURALGIA AND HE ONLY SENT ME FOR THE MRI BECAUSE MULPI SULCORIS AND BRAIN TUMOR ARE ASSOCIATED WITH TRIGEMINAL THANK GOD I DID NOT HAVE EITHER ONE OF THOSE. I WAS PUT ON TEGERTROL 800 MG. A DAY I DID NOT LIKE WHAT IT COULD DO TO MY BODY. SO I WAS SENT TO A GREAT NEURO SURGEON AND WE DISCUSSED THE BRAIN SURGERY. I WENT FOR THE BRAIN SURGERY ON NOV.17TH 1999 AND IT IS NOW APRIL 27TH 2000 AND I AM PAIN FREE. THE SURGEON SAID IF THE SURGERY WAS A SUCESS THE PAIN WILL NOT COME BACK BUT IF IT WAS NOT THE PAIN SHOULD RETURN IN 6 TO 9 MONTHS DOWN THE ROAD. FROM THE SURGERY SO FAR I ONLY HAVE PRESSURE IN THE BACK OF MY HEAD. I WILL LIVE WITH THAT ANY DAY INSTEAD OF THE TRIGEMINAL PAIN.I AM DOING FINE, GOOD LUCK TO ALL OUT THERE!!!!!
ROSEMARY INGRAM <AREEYERI@AOL.COM>
NORTHLAKE, IL USA - Thursday, April 27, 2000 at 20:19:49 (PDT)

My wife has been diagnosed with Trigeminal Neuralgia. The pain is extreme. The Dr. has put her on pain medicine but she still suffers with pain. The pain medicine side effects is dizziness among other things. So she has to lay down much of the day. I would appreciate any input that you can offer. Jack Carpenter, jack@carpenterleasing.com
Jack Carpenter <jack@carpenterleasing.com>
Little Rock, Ar USA - Tuesday, April 25, 2000 at 06:00:40 (PDT)

I was first diagnosed with TN in August of '99. I was asked by my dentist if I could associate anything in my life with the onset of the pain. The only association I could make was that I had recently begun jumping rope on a regular basis. That fact seemed irrelevant to the dentist. I wouldn't have thought anything more of it except that my TN pain, after seeming dormant for a number of months, has started to come back and has gotten much more severe after one time of jumping rope. Has anyone else seemed to experience increased pain as a result of exercise, maybe especially jarring exercise like jumping rope or running?
Amy Zinn
USA - Friday, April 21, 2000 at 22:11:41 (PDT)

I was first diagnosed with TN in August of '99. I was asked by my dentist if I could associate anything in my life with the onset of the pain. The only association I could make was that I had recently begun jumping rope on a regular basis. That fact seemed irrelevant to the dentist. I wouldn't have thought anything more of it except that my TN pain, after seeming dormant for a number of months, has started to come back and has gotten much more severe after one time of jumping rope. Has anyone else seemed to experience increased pain as a result of exercise, maybe especially jarring exercise like jumping rope or running?
Amy Zinn
USA - Friday, April 21, 2000 at 22:01:07 (PDT)

I wrote on April 3rd about my EMD surgery. It is now 2to3 weeks latter and all is going well> It is great to be pain free. My wife says my constant frown is gone and my eyes actually look alive! I guess that is what a reprieve from constant pain will do for you. If anyone wants informayion please contact me. I,m so thankful it is over!
Dave H. Buss <dhbuss@webtv.net>
Moorpark, Ca USA - Thursday, April 20, 2000 at 21:03:42 (PDT)

I AM A 45 YEAR OLD FEMALE I HAVE A LOT OF MEDICAL PROBLEMS AND I FEEL ALONE AND CONFUSED,I'VE GOT M.V.P. SLEEP APNE, NARKALEPSY, AND POOLS SUPPLY PLATELET DISEASE OF THE BLOOD I DONT CLOT, NOW 6 MONTH A GO I HURT MY WRIST AND ALL THE MEDICAL SERVICES HAS NOW CAME UP TO SAY I HAVE A VASCULAR MALFORMATION IN MY WRIST WITH 2 MRI MY DOCTOR STILLS SAYS I HAVE A TENDON PROBLEM EVEN THOUGH IT LOOKS LIKE I HAVE A DEFORMED WRIST AND I CANT USE IT , I HAVE ENOUGHT PROBLEMS WITH OUT A NOTHER BUT MY INSURANSE COM. WILL ONLY LET ME SEE WHO THE WONT DOES ANYONE KNOW WHO I CAN TALK TO I ALSO HAVE SEV. DEPRESSION, PLEASE E-MAIL ME jolson1@bellsouth.net THANKS
CALISTA GAIL OLSON <jolson1@bellsouth.net>
GAINESVILLE, GA USA - Saturday, April 15, 2000 at 12:14:06 (PDT)

I am 36 years old and i am suffering from tmj and tn for 3 years and i have just recently been told that I have tn. for the past 3 yrs I have gone to countless doctors and heard there is nothing wrong with me and we can't help you and they would send me to another dentist and to oral surgens. The tn started after I had root canal on front tooth. The tmj happend after trama to my jaw. well after countless doctors and countless test done on me and even opeining my gums to see what was going on, I finally was told to go to the pain clinic and they told me this is what I have and they sent me to the pennsylvania university hospital in philly. I am now being treated for both my tmj and tn which feed off of each other. One day I feel great and the next day the pain is bad but since i have been on med it has gotten better. the pain i mean. i was told that my grandmother suffered from this. I am glad i found this web site. I thought for a while i was going crazy.
ann myers <mrsparrotmom@aol.com>
pa USA - Friday, April 14, 2000 at 02:48:42 (PDT)

My aunt Mary has been suffering with trigeminal neurolgia for approximately eight years. She is 78 years old, it is so frustrating, not being able to help her. She doesn't have the greatest medical plan, and so far, no one has been able to help her. If anyone can offer any advice please let me know. I can't print all of the guestbook, to show her, because I'm at work. I wish I could, so she would know, she's not the only one who has this horrible pain. We all (her family) feel very helpless. I would appreciate any information.
Joan Crittenden <crijoan@yahoo.com>
St. Louis, MO USA - Wednesday, April 12, 2000 at 13:02:54 (PDT)

To its272@webtvnet: I tried to write to your email address but was unable to. In answer to your question about Dilantin I was on Dilantin for over 20 years and have 2 very healthy sons. I was the one taking Dilantin though and not my husband so I would suggest to talk to his doctor. I have never heard of it affecting sperm count but there is that possiblity. I was warned that babies I carried could be born with cleft palet(sp) but neither were. Like I said they are very healthy. Best of luck
Mary <typomommh@aol.com>
St Cloud, Mn USA - Sunday, April 09, 2000 at 16:12:05 (PDT)

huge pain, how to cope day to day alone with two children and career
Kelly McDonough <kellymcdonough@home.com>
Roches Pt, ont Canada - Sunday, April 09, 2000 at 04:07:00 (PDT)

I am 40 years old. I have had TN since 1984 after a wisdom tooth was removed. Everyone has denied that there was any connection for all these years. They still deny it. However, I definitely have this torment regardless of "what" the fault or reason is. I had a Thermal Coagulation done in 1990 and was fairly pain free until last week. The pain came back hard and heavy, I found out my Tegretol and Dilantin levels were way too low. We don't know why but they put me in the hospital and boosted my Dilantin (900 mg) and got me under control again. I did have nerve blocks done in the late 80's, unless you are completely desperate, please don't go through them. They are just as painful as the attacks. It did have a numbing effect like novacaine, but it won't last and it is VERY painful. My thermal coagulation surjery was not easy to go through either but 9 years of "horrible" attacks reduced to only a couple of bad days once in awhile was the best thing I did. You're not alone, that's for sure. I have found out that citrus fruit should not be eaten, they clean out your liver and that's where your medicine is stored. Before doing surjery, make sure your levels are up, that may be all you need to maintain "pain-free" living. (I also take Orap, your Dr's won't know what it is, but it opened my mouth one day and I've taken it since.) My heart is with you.
Rhonda D. Deischer <rhonda5977@aol.com>
Indpls, IN USA - Saturday, April 08, 2000 at 08:05:30 (PDT)

I have had TN for over a year now. Am taking Neurontin currently and have good days and bad days.
Anna Marie Womble <atwomble@aol.com>
St Louis, MO USA - Saturday, April 08, 2000 at 08:00:00 (PDT)

I have had Trigeminal Neuralsia for 4 years. I have treated with many different drugs, had microvascular decompression surgery, but am still having pain, but a different type of pain I believe to be nerve damage from the many years of "sparks."
Anne Harrold <harrold6@juno.com>
Salem, OR USA - Friday, April 07, 2000 at 22:13:17 (PDT)

I just found a great site I wanted to share with everyone. The Chronic Pain Foundation has a homepage with its own chat room. I've visited a few times, and talking with others like me really helped. I've had TN for just over a year now, and I think this chat room is just what I needed to get me through. For anyone who is coping with chronic pain, this chat room will make a big difference.http://www.chronicpainfoundation.org/CHAT.htm
Megan Robbins <serrah_angel@yahoo.com>
Cleveland, OH USA - Wednesday, April 05, 2000 at 03:50:57 (PDT)

I'm so glad I found this web site about dilatin.I have some f the same symptons as some of you.I thought it was just me I have found out a lot by reading some of your experiences. Which you have shared and I'm so happy to find someone who knows how it excatly feels by going through it and not just seeing it happen
Shanika <niknik_@hotmail.com>
USA - Tuesday, April 04, 2000 at 13:17:57 (PDT)

I had EMD surgey done on March27,00. I had a vien removed from the nerve and also an artery. It wasdone at Cedars-Sinai in LA. Dr. Shahinian was 98% certain my pain of 17 years would not return. It will great not t worry about the return of the TN pain. I went in with very little pain but it was returning. Currently, I have no pain.My recovery time will be approx. 2-3 weeks. I will have the staples removed on April 11.00. If you would like additional info please write me. I f you have TN as I do it is worth looking into. DAVE
Dave H. Buss <dhbuss@webtv.net>
Moorpark, CA USA - Monday, April 03, 2000 at 11:05:31 (PDT)

(YourNot Alone) My husband is diagnosed with (RSD)a reflex symathetic dystrothy, tendinits as well as tunnel syndrome. He has been taking Neurontin 300mg 4 times a day. I was wondering if anyone would know if this medicine would effect us having kids?
Linda <lts272@webtv.net>
Allentown, PA USA - Sunday, April 02, 2000 at 21:37:30 (PDT)

what is your not alone ? I'm new with this internet thing but old at living in a lot of pain.
jim sullivan <navelas@webtv,net>
USA - Sunday, April 02, 2000 at 04:16:52 (PDT)

I am 36 years old. I had TMJ surgery about 10 years ago, which helped, but at the time i was paralyzed on the right side of my face. It eventually came back after 6 months, but im still numb. I also have very bad migranes. About 2 years ago, on Christmas Eve, i had this "worst pain immaginable" on my face and jaw. My husband took me to the emergengy room. There, the doctor said she thought it was TN. I went to my physician. They ordered and MRI and had dye shot in my jaw, to find i had TN. I guess I'm fortunate, in some way. I only get attacks once in a while. I always get them at the dentists...They are horrible. I really feel for everyone out there that gets them. I just hope this doesn't get worse as i get older.... But I'll hope they might find a cure.....
Donna <Angel121763@aol.com>
USA - Friday, March 31, 2000 at 11:57:28 (PST)

I had a upper tooth removed about 1994 . at the time i started to haveiratation running tords my eyes and at the holes where the nevres enter the skull at nape of neck. it took so long to see docs it finally went awayno answers given. now last april or so i started to have pain along the ltjaw which felt like ultra sound the chiropractor would give you, this lead to multiple doc visits dental,ents,sleep[i have sleep apnea]and othro surg. yesterday they decided and i think correctly that tn is the cause.i do see it from what i have readthe pain now is much sharper and where the jaw lower curves upward is the spot,where when the pain hits if rubbed the pain eases but thats the center of the pain. as i guess you all know that s obvious.i have been a activist in the sleep field for years and now my med ed willcontinue i guess. i have had durring all this swollen salivaglands a abcessed tooth canaled needed anywaysi'de like to hear from people who this all seems familiar to themJIM
Jim Denning <caradoc28@aol.com>
ma USA - Friday, March 31, 2000 at 11:16:33 (PST)

I am an 86 year old man in excellent health except for TN. Am currently on 1000 mg. Tegretol but still have pain especially when chewing, etc. The shooting pains are goe but life is still miserable. Any suggestions? Have seen two neurosurgeons, one advised a neurectomy and the other the MVD procedure. I don't like the idea of a general anesthesia (never had one in my life!) Has anyone been to the University of Pittsburgh? I may consider going there.
Harold Snedden <HMSpoolfish@aol.com>
OH USA - Thursday, March 30, 2000 at 17:51:49 (PST)

Wondering why so many of us suffer? Why more of us don't have surgery? Has any one been helped by surgery? I am tired of trying to figure out what I have,sinus,dental or TN.I am tired of pills, sometimes they help,sometimes not sogood. Waiting for some good news from the guestbook.Thank you,Joan
Joan Larkin <JoanLrk@aol.com>
USA - Tuesday, March 28, 2000 at 08:52:58 (PST)

I have been diagnosed as having TN in January. Aug.99, I was being treated for possible sinus infections, even had a CAT scan for infectons. Who would think that just blowing your nose would send you in such agonizing pain. I have just had my med (neurontin) increased to 400 mgs 3X daily. My pain settles in my left eye and travels to my head, burning and shocking all the way. Within one hour I could have as many as fifteen or more episodes. Christmas was a disaster, family dinner was a chore, chewing becomes painful, brushing of my teeth is painful,talking, the wind is painful, the sun is painful to my eye, I wear sunglasses indoors,don't let me make the mistake of scratching my head, another offset.Even though I do have a job, when the episodes come my coworkers are very helpful.Like the previous sufferer, the telephone is my job. When the pain hits, i just have to let ring, I'm too busy holding my head in my hand. With each episode my face turns cherry red from the burning sensation and my check and nose become swollen, my left eye runs like water and the pupil becomes very sore from the many episodes. My sister suggested that I use moisturing drops from my contacts( which I can't wear) to releave the soreness, it works. The medication helps the severity of the attacks but it does not get rid of the pain entirely.It seems as if I can expect these attacks every month even with medication.I can't let this control my life. My immediate family knows the severity of my pain, I have explained it to my nieces and my teenaged children. Thank God I don't have any little ones, but I do have one grandhchild. I just pray to God to deliver me from this affliciton. I don't know if I can handle years of pain and not knowing when and how severe.God bless and keep each and every one of you.
Sylvia Carter <tgif1194@aol.com>
Phila, pa USA - Saturday, March 25, 2000 at 22:45:37 (PST)

Hello again everyone! Just an update from here. I wrote a few weeks ago about a conflict with just starting to take Tegretol (instead of Neurontin) and my hormone replacement medicine. The doctor said that it is NOT a conflict, I am merely into "full swing menopause"...oo joy joy!! haha Why can't some of these male doctors go throught is too!! Anyway, the Tegretol seems to be working for the main part of my facial pain and the side effects seem to be minimal now. From what my doctor tells me, I have a mild case of TN compared to so many of you that have severe pain and several surgeries to try to ease that pain. I have gone through two years of pain while on Neurontin before my doctor finally switched me to Tegretol. To everyone else...Hang in there, and keep saying those prayers. Strenght and faith is what keeps us all going through this conditon.God Bless,
Marilyn H <corkyham@hotmail.com>
OH USA - Wednesday, March 22, 2000 at 19:23:20 (PST)

Now that I know how to sign in here goes. After one full year of no pain and I mean no pain,it started up again in March like before,I think it's tooth, or maybe my sinus starting up again,but I know deep down it's the(tic d)or tn,so I am taking one more neurontin and hope I can get some relief. I have had this pain over a period of 8yrs. I never want to make plans because I never know if the pain will be too much for me. I,m glad we have this guestbook.JL
Joan Larkin <JoanLlrk@aol.com>
Medfield, Ma USA - Wednesday, March 22, 2000 at 13:44:05 (PST)

I did submit,but I do not see my letter to the guestbook.What is my next step.
Joan Larkin <JoanLrk@aol.com>
Medfield, Ma USA - Wednesday, March 22, 2000 at 09:42:47 (PST)

My daughter was on the guestbook a fews back for me becauseI did not have a computer,now I do.I need a feedback from other people so I won't feel so alone.
Joan Larkin <JoanLrk@aol.com>
Medfield, Ma. USA - Wednesday, March 22, 2000 at 09:23:36 (PST)

I thought I was alone having an illness or pain no one had ever heard of in St. Louis and here.We just moved recently and I realistically am alone as I don't know anyone. I have to get rid of this pain because I just can't take it anymore. So, please, write often because YOU ARE MY ONLY FRIENDS NOW AND I HAVE TO FIND SOMETHING TO GET RID OF THIS PAIN EVEN IF IT'S BECOMMING A DRUG ADDIT TO PRESCRIPTION DRUGS-NEVER ILLEGAL. SO, WRITE, WRITE, WRITE, AND VISIT IF YOU CAN AND WE CAN SIT ON THE BEACH IN THE GULF. ANY SUGGESTIONS ANY OF YOU MAY HAVE ARE GREATLY APPRECIATED.
Pamela W. Sherfy <pwsfla@wet.net>
Bradenton, FL USA - Tuesday, March 21, 2000 at 00:54:16 (PST)

I have suffered with TN and ATN since 1994. 2100 mg of Neurontin and vicodin for breakthrough pain in addition to Paxil and Pamelor. Finally, on Thursday last I went to Stanford Pain Clinic in SanFrancisco and had a gasserian ganglion nerve block. It's only been two days, but I am PAIN FREE which I have not been for a long long time. (The atypical constant pain was wearing me down). I'm so excited, I don't know quite how to behave! I'm praying this is it, but I am certainly open to another nerve block if this one is only temporary. If you live in California tell your doctor about this procedure and about UCSF Pain Management Clinic. I am only sorry I waited so long to see them (my doctors did their best, but...)! Best of luck to all of you and if anyone wants to write to me, feel free!
Kris <shesings@lightspeed.net>
CA USA - Saturday, March 18, 2000 at 11:42:08 (PST)

Ok I have a question. Like I said I haven't been officially diagnosed with Neuralgia. I've had one GP say I have it, another said no one could be sure as it's difficult to diagnose and a third one is going to try Homeopathic treatments on me for Neuralgia. The thing is I had an abscess in my face around the left eye and cheek about two weeks ago, this morning it feels as though I'm getting one again in exactly the same place. I'm in extreme pain and I don't know what to do really, nothing touches it. My main question is this though: Has anyone else suffered the same sort of thing? Does the Neuralgia increase the risk of abscesses or exacerbate them? Or do I have something completly different? If you have any answers I'd dearly like to know. Thanks
Fiona <fcTalk@hotmail.com>
Sheffield, UK - Saturday, March 18, 2000 at 07:49:02 (PST)

I have suffered from TN for almost two years. It began afteran allergic episode of hives, on my face. (The Drs say there's no corelation.)I went to my internist who ran blood tests, but in the end he didn't have a clue as to howhow to treat it. Finally I went a neuraligist, had a MRI and MRA, everything checked out. The pain has come and gone sometimes lulling one into thinking that you have won. The culprit is the Northly winter wind and the winter temps of 30 and 40. In Texas this wind can come at anytime and does from Nov. to Apr. regularly. I empathize with you'all and hope for all our sakes they can give use relief forthe long term.
Tim Himes <timhimes@hotmail.com>
Dallas, Tx USA - Friday, March 17, 2000 at 19:50:59 (PST)

I haven't been diagnosed officially with Nueralgia. I started with a lot of pain in the left side of my face last November without any sort of warning. I've been on two lots of tablets, currently Tegretol, which doesn't touch the pain and taking pain killers is totally pointless as they do nothing at all for me. I'd like to say it is great to know their are people out there who can really understand what I'm going through. I have a sympathetic family, but it's not quite the same. I'm quite lucky at the moment as I am able to work, although today I had to come home early becuse of the pain. My doctor is going to try me on some Homeopathic remedies in two weeks. I will let you all know if this has any effect as I'm sure you'd like to know of any type of relief. I'm sure hoping it works.
Fiona <fcTalk@hotmail.com>
Sheffield, UK - Friday, March 17, 2000 at 16:19:14 (PST)

God it feels so good to have found this page, to read and hear what others have to say to know I am not alone, I feel so alone, the pain is a living hell a nightmare that you never wake up from. Please I need friends. People that understand what I am living with, someone to just write me and I will write you back, it feels better to know I am not alone. The only thing that I have found that helps with the pain is Lortabs, and they don't take all the pain away but what would other than the knife. The doctors say they can't or don't like to give out to many Lortabs fear your be "hooked" I say I rather be hooked than to live in this nightmare, to face pain every day of your life, going to bed with pain to wake with the same dull pain, if your lucky to sleep. I have spent tons of money at the dentist office, thinking it had to be my teeth. I am just so thankful to have found this page, living in pain is not easy but to know your not alone helps some. Please I need friends that will be willing to be pen-pals, if you live in TN I am willing to even meet person to person in time, lets become friends by e-mail, I will be your friend, will you be my friend? I need someone, people to talk to that knows my pain.
Nancy <IBeYFriend@aol.com>
Hendersonville, TN USA - Thursday, March 16, 2000 at 19:41:33 (PST)

Hello! Had a little break from the pain and wanted to tell everyone my heart goes out to you, I've been there. To date I am taking 1200mg of Neurontin and still no relief, just this breif moment. God Bless!
Rhonda
USA - Thursday, March 16, 2000 at 18:22:51 (PST)

Hi: I had the shingle in Feb of 1999, and this left me with a facial norelgia. It has affected my trigeminal, glossopherial and 9th crainal plus more. I am being sent to see an associate of Dr. Jannetta for decompression. I have been down the path of meds and they do nothing for me. I haven't been able to work do to my job and I feel like I am in my own world. Would like to hear from others who are where I am at or even those who just need an ear.God Bless and Keep you all.Coral at MECJB@aol.com
Coral <Mecjb@aol.com>
Erie, PA USA - Thursday, March 16, 2000 at 17:14:49 (PST)

Me again... The sentence in my comment below should read:The doctor then prescribed Tegretolwhich overcame the pain but adversely affected her liver.
Judy <joodith@excite.com>
Rochester, NY USA - Thursday, March 16, 2000 at 16:51:04 (PST)

Hello...My mother was diagnosed with Trigeminal Neuralgia in November 1999. Her neurologist initially prescribed Neurontin but the pain was unaffected by it. The doctor then prescribed Tegretol which overcame the pain adversely affected her. Most recently, her doctor has prescribed Trileptal. My mom has been on it for a week now and has had no breakthrough pain. The side effects have been nausea and occasional chills but her blood work has been good (unlike when taking Tegretol). To combat the nausea, she has been taking ginger root capsules (2 400mg capsules every 4 hours) and the nausea has vanished. I just thought this may be of interest to anyone who was unable to take Tegretol or wasn't having any luck with Neurontin. Trileptal was just made available in the USA last month.
Judy <joodith@excite.com>
Rochester, NY USA - Thursday, March 16, 2000 at 16:48:30 (PST)

I have had TN now for nearly 10 years. Have triedall the usual stuff - teg., neurontin-- and eventhe unusual stuff -- TENS, acupuncture (none worked)Has anyone ever tried the chiropractic "Atlas adjustment"?
b murray <capias1@mpinet.net>
USA - Wednesday, March 15, 2000 at 07:54:33 (PST)

I'm 36 and have wriiten in here several times. Rhonda if you are out there contact me cause I have the same problem. Would like to talk to you some more.. UPDATE: I'm currently still on 1200mg of Neurontin a day to no relief. I am right now suffering from yet another swollen face on the left side. I wanna thank everyone who responded to my last request...God Bless everyone here!!!!!!
Rhonda <angel_35_63_99@hotmail.com>
Pa. USA - Wednesday, March 15, 2000 at 01:58:08 (PST)

I was diagnosed with TN in 1981, since I've had just about everything possable done including, 11 rizzotomys, and 5 brain surgeries, and many drugs, and many more medical procedures without relief. I'm just hanging in there and trying to find some hope and relief, thanks for letting me vent my frustration.
Michael Madsen <MMadsenMik@aol.com>
Cincinnati, OH USA - Tuesday, March 14, 2000 at 19:24:59 (PST)

Hello, My name is Rhonda and I was diagnosed with Trigeminal Neuralgia in Feb. but I have lived with this pain since the summer of 94. I have had 2 perfectly good teeth pulledbeen diagnosed with sinus, TMJ and I have been fitted for apartial, and it wasn't until Feb. that my doctor put me on Neurotin, it helps somewhat but the pain is still there.I have tried to make an appointment with a doctor at an nearby Medicial University but they have to review my case.They only take cases that are severe enough. I believe thatif just one of them had this , they wouldn't need to reveiw any cases.Due to the fact that I don't have any medicial insurances I can't be picky, but as long as they help relieveme of my pain . I want to get a job but due to the side effectsof the medicine it hard. No one want to hire someone on pain pills.I just hope that the University accepts my cases, maybe then I can get some relief. Is there anyone out there who hasbeen diagnosed with this TN as early in life as mine? I don't mean this as an insult to the elders, I just look at it as anlife sentence at an early age.
Rhonda
USA - Sunday, March 12, 2000 at 17:54:42 (PST)

Hello Again everyone. I wrote here in the guestbook a few months back. At that time I had been struggling with facial neuralgia pain for over 2 years and currently seeing a doctor at the pain clinic in my area. He refused to diagnose me as having Trigeminal Neuralgia "since my pain seemed to be constant and I wasn't having many lightning type attacks". In January 2000, during a regular appointment with this doctor, I got hit with the lightning type attack right there in his office where he could witness this pain first hand. As I sat, in tears, holding my eye and temple area, he looked at me and finally said to me "I think it's time to start you on Tegretol instead of the Neurontin and now diagnose you as having Trigeminal Neuralgia". Within two days I was noticing a tremendous difference in my level of pain and I felt like I was beginning to get my life back again. I have now been on Tegretol 200-300 mg a day for a month and it is controlling 90% of my facial pain. My concern, which my family doctor nor my pain clinic doctor can not answer and I am hoping that SOMEONE out there might have some suggestions...Has anyone had any problems with Tegretol and hormone replacement medicines not getting along? I am in full swing menopause and taking both the Tegretol and estrogen replacement medication is causing other side effects for me.If anyone is willing to share any of this with me, please e mail me.God Bless each and every one of you,
Marilyn H. <corkyham@hotmail.com>
USA - Thursday, March 09, 2000 at 20:11:36 (PST)

It's good to know that you have a website so that people who have this condition have hope to go on.
Ashley K. Wells <Ashleyk200@aol.com>
Sarasota, FL USA - Saturday, March 04, 2000 at 14:05:55 (PST)

My last here was October 99. Since then I have been to Penn State Hershey Medical Center. I did this for a second opinion and actually got no where but yet another increase in my Neurontin. I am currently on 1200mg a day and to no relief. I am currently searching for a Specialist in only TN in Pennsylvania. Anyone there have any information please contact me at my e-mail address....Bless all!
Rhonda <angel_35_63_99@hotmail.com>
Chambersburg, Pa. USA - Saturday, March 04, 2000 at 11:15:08 (PST)

I was wondering if there was a chat room somewhere on the web for people with TN? There are times when the pain is unbearable, and having somewhere to talk and vent with others like me would be very reassuring. If any one knows, please email me!
Megan Robbins <serrah_angel@yahoo.com>
Cleveland, OH USA - Saturday, March 04, 2000 at 09:16:25 (PST)

have had TN for over 12 years. Before diagnosed,had lots of dental work and e-rays done. Also, an MRI to exclude possibility of tumor. Have used Tegretol and baclofen in combination with low dose of the antidepressant Effexor. Get good results if all meds are taken timely which is every 8 hrs. When pain has worsened drastically have tried Neurontin but it did not work for me. Also,would note that I am unable to take generic tegretol....that stuff will make you sick in addition to the pain you are already dealing with. Stresss is my worst enemy and sets off the worst spells. Have tried to restructure my life of course which is very difficult. As most, have trouble with memory loss and forget what words to use in conversation. Pain generated by brushing teeth, washing face, water from shower, blowing nose,wind on my face...I could go on and on.What I Hate the worst is how no one really understands what this is like to live with...never knowing when it is going to happen or when the meds will fail you. My line of work was very technical, lots of math, client meetings, deadlines..pain became so bad was asked to take a med leave in about 7 yrs ago. Was able to get short term dis. from work and about 3 years of long term from a personal policy that I have. My ins co was sold to another and they stopped my benefits and now am still trying again to get it restarted...is anyone on disability? Do any of you have your own dis policy outside of work? I have even tried some parttime work but find driving any distance difficulty due to side effects of meds. Also, be sure to have regular blood tests if you are taking tegretol to keep a check on the amount in your system since it can affect your kidney or liver..sorry, can't remember which one. Ask your doctor.Recently, i have been doing very well. I work in yard, read, do normal household chores, avoid stressfull situations as much as possible...and if things get so that it is impossible to stick my head in the sand...the pain comes and you know the routine.,,increase in doses, etc. I currently am taking 900mg of tegretol daily along with a low dose of the baclofen and effexor. Am also taking a med for high blood pressure and premarin to replace estrogen. All my doctors wanted to be sure that I had what was needed to try and keep the rest of the body in good repair. Luck to us all hope I have been able to help also hope to get response from you..today is a new day!
sandy stephenson <guystephenson@mindspring.com>
USA - Wednesday, March 01, 2000 at 06:56:18 (PST)

Going to see a Dr. Decker(a neurosurgeon) on Long Island to discuss MVDs on trigeminal nerve and glossopharengeal nerve. He has recommended this. Anyone used him before for surgery? Also,does anyone know if sectioning theglosso nerve is more effective? Thank you.
Tina Shifter <shifter937@yahoo.com>
PLAINVIEW, NY USA - Tuesday, February 29, 2000 at 19:34:18 (PST)

Dear Readers: I believe there is hope for all of you who suffer with T/N. my mother has this condition. Over 11 years ago she had a gelyrol injection and it seemed to work for about 10 years. In march of 1999 it returned full force. She underwent radition treatment with very little success. In Nov. of 1999 she underwent the Microvasular Decompression. And to date she appears to be recovering just find. She has been pain free for the last 3 months. Mother had her surgery at Stanford University in Pala Alto. Great Nureo-science clinic.
Debra <debrach2@juno.com>
san jose, ca USA - Tuesday, February 29, 2000 at 14:30:24 (PST)

I was diagnosed with TN about 3 months ago. I just completed treatment of interferon & ribaviran for Hepatitis C in October 1999 and the pain started. The first attack also involved a shingles like rash on my face and severe pain in my ear and jaw and temple. I went to an ear nose & throat doctor who said he thought it was TN. I had never heard of this before then. I have had many dental procedures - so it is difficult to pin down the cause of this. I am currently taking (the last 2 weeks) neurontin 400 mg. 3 times a day and I am still in pain. The pain went away for a day and returned. Every time we ramp up the dose the pain goes away - then returns. My doctor says you can take up to 3600 mg a day - but that seems excessive. I have an appointment with a neuroligist in March - hopefully he will be able to tell me for sure what is going on with my face and how to help me. Any suggestions - my e-mail is thundrgraf@aol.com
Mary Kathryn <thundrgraf@aol.com>
Hollywood, FL USA - Tuesday, February 29, 2000 at 10:28:54 (PST)

Testing guestbook
Michael
USA - Tuesday, February 29, 2000 at 09:04:49 (PST)

I am a new user to this drug named Tegretal, I am a little confused because I suffer from extreme case of depression, I will ask my Physcian about this. I do not have epilepsy, and I am currently studying and taking a correspondance course for writing. I have read that this drug causes memory loss, and vocabulary mis-spelling-what a horror for an aspiring writer!
Mary Rothstein
USA - Friday, January 14, 2000 at 08:48:20 (PST)

I am a new user to this drug named Tegretal, I am a little confused because I suffer from extreme case of depression, I will ask my Physcian about this. I do not have epilepsy, and I am currently studying and taking a correspondance course for writing. I have read that this drug causes memory loss, and vocabulary mis-spelling-what a horror for an aspiring writer!
Mary Rothstein
USA - Friday, January 14, 2000 at 08:47:50 (PST)

I went for dental work in November of 1998 I was fine and in no pain whatsoever. The dentist said I needed 2 fillings so I thought o.k. he should know. After he finished the tooth felt "big" I thought he didn't scale down the filling instead it started to be an allergic reaction to white fillings. He didn't fix the problem I ended up going from pillar to post to various dentists/doctors/neurologist/nautropaths none of which have helped my now trigeminal nerve pain. Infact the pain is now spreading down my right arm. I am in constant pain with no help in sight. My workmates do not understand the stress and strain that I am under and my family are tired of me taking so many different medications (however I was not prescribed Tegretol or Toradol) the neurologist prescribed me "Epilim" I do not have epilitic. I had to stop taking them because they did not help me and also there were too many side effects. I am in such pain. I hope one day I will get better and that includes the rest of you guys as well!!!
Patricia Bardini <PBardini@swin.edu.au>
Melbourne, Vic Australia - Tuesday, January 11, 2000 at 20:31:39 (PST)

I have had trigeminal nerve pain since have dental work (November 1998) a LONG time living with pain. I find all forms of medical help of no use. If you know of something please let me know.
Patricia Bardini <PBardini@swin.edu.au>
Melbourne, vic Australia - Tuesday, January 11, 2000 at 20:10:33 (PST)

HI MY NAME IS KATHY. I HAVE T.N. I HAVE HAD T.N. FOR 3 YEARS. I HAVE TRIED MOST MEDS SUCH AS AMITRIPTYLINE, CLONAZEPAM, TEGRETOL, NEURONTIN, BACLOFEN, DILANTIN AND LORTAB. NONE HAVE WORKED COMPETELY...OF COURSE. I HAD MICROVASCULAR DECOMPRESSION DONE ONE MONTH AGO AT THE UNIVERSITY OF IOWA HOSPITAL. AFTER ABOUT TWO WEEKS THE PAIN HAS STARTED TO RETURN BUT NOT NEAR AS BAD. IT IS RETURNING WHERE THE NUMBNESS IS WEARING OFF. BUMMER HUH! I AM STARTING A SUPPORT GROUP IN NORTH CENTRAL IOWA. IF ANYONE IS INTERESTED PLEASE CONTACT ME!!! IF YOU NEED TO TALK TO SOMEONE ABOUT T.N. OR JUST NEED A FRIEND TO LISTEN DON'T HESITATE TO GET IN TOUCH!!!!!!!!YOU AREN'T ALONE IN THIS AND THERE ARE PEOPLE OUT THERE THAN CAN HELP YOU!!! WISHING YOU A PAINFREE NEW MILLENIUM!!!!
Kathy Graybill <katsstorm@yahoo.com>
Iowa USA - Tuesday, January 11, 2000 at 17:38:00 (PST)

My mother had the surgery in 1989 or early 1990. At that time this was a "new" disorder. She was "lucky" in that after a year of suffering higher and higher doses of Tegretol and sulpha drugs (together)she finally had the procedure. They told her that it was a 50/50 chance of helping. It worked. And lasted for ten years... she was drug free. Over the past couple years she has had "twitches" that have scared her. And now they are back full blown. I'll never forget watching my mother run throughout the house screaming because she was in so much pain. I'm so scared that this will happen again. I will never forget how she looked after surgery - with what looked like a big zipper in her scalp that ran the length of her head back to the base of her neck. But I have to say that that procedure was a miracle for our family. She came off the drugs almost immediately. It's my understanding that this disorder varies greatly from person to person. Medications are the answer for some, and surgery for others. That's the thing that's so frustrating to us all-- it's a gamble. My mother is so brave facing this second round. I'm scared stiff. She feels better just knowing that she doesn't have to waste all that time begging dentists for help they couldn't give her. Just the fact that there is a site devoted to this disorder shows how far we've come in ten short years. So- I'll include all of you, as well as my Mom, in my prayers. I'm so glad you're all here. Christine in Norfolk. My mother's name is Barbara. Say a prayer for her, too. Thank you...
christine thorndike <mlegris@picusnet.com>
norfolk, va USA - Monday, January 10, 2000 at 21:29:54 (PST)

My mother suffers from this condition... it's been gone for ten years, and now it is back. We are all scared and are in need of comfort.
christine thorndike <mlegris@picusnet.com>
USA - Monday, January 10, 2000 at 21:14:43 (PST)

well, i have written before but i wanted everyone to know something very important. i was diagnosed with this in dec. of 1983 and that boutlasted about 2 years. i then had another bout of it about 10 years ago. this time it came on about oct. of 1999. i was taking the usual tegretol....but i was taking the generic tegretol....this bout has made me think that i reallycan't go on in life...being sick all the time. yesterday i started crying...not unusual for me when i have this...and myhusband who is a physician...a psychiatrist....told me thathe had read a couple of years ago in a journal...he forgets which one....that they have had trouble with the generic tegretol....which i am taking.....so he ran over to the pharmacy and prescribed the "REAL THING"...and hooray...i am feeling soooooo much better. i even was laughing so hard when one of my cousins called that my husband commmented that i must be feeling better...he hasn't heard me laugh in ages....so i guess what i am trying to sayis .....IF YOU ARE TAKING THE GENERIC TEGRETOL.....GET OFF OF IT....AND GET ON THE REAL TEGRETOLand see if that doesn't make a difference.....i also have been to several neurologists here in houstonand none of them suggested surgery......don't have surgeryit doesn't work and it has the potential for making you worse....this comes and goes....and if it were something pressing on your nerve...itwould stay there...trust me...and trust my neurologists...and my husband who wants me to be well more than anyone....and he would be the first to encourage surgery if he thought it would "CURE" me....good luckand email me if you want to talk about this...beth
beth johnstone <beth.johnstone@juno.com>
houston, tx USA - Monday, January 10, 2000 at 13:09:47 (PST)

Hello. My name is Kathy and I have had the MVD (microvascular decompression) done in St. Louis at Barnes hospital just 12/14/99. I am pleased with the results so far. I do have some hearing problems due to fluid in the inner ear. I had had Gamma Knife also done in July 1999, it only lasted 2 months. Hopefully this last surgery will be the one to take care of Trigeminal Neur. for ever. Kathy
Kathy <kathyhupe@hotmail.com>
Vienna, IL USA - Sunday, January 09, 2000 at 11:30:02 (PST)

I read an entry from September 24, 1999. It was fromShelby in KY. I am also a T/N patient from KY. Do you know of any support groups in KY. We need to help eachother find ways to cope with this terrible pain. Youdidn't leave an E-mail address so if you read this pleaseE-mail me.
Shawna D <4dailey@bellsouth.net>
KY USA - Saturday, January 08, 2000 at 23:28:36 (PST)

In 7/97 I had a root canal. Within 24 hours I began to have the most excruciating pain I have ever experienced.This pain was above and beyond anything I felt when I hadmy two children. I returned to my dentist who X-rayed mytooth and finding nothing wrong gave me something for pain.Two days later I returned begging for him to just pull thetooth. He sent me to and oral surgeon who obliged. The tooth was gone but the pain was only worse. At 4:00 A.M.the next morning I went to the University of KY emergencyroom. I sat in the E.R. for 2 hours literally screamingin pain before someone finally gave me a shot to kill thepain. I was told to see my family doctor in the morning.He diagnosed me with T/N and I was given Toradol, Steriodsand Tegretol. Within a week the worst of the pain was gone.I was never told that this horrible pain could return.I was pain free except for an occasional twinge. One yearlater I saw a new dentist who convinced me that I neededa bridge as my bite would be off because of the missing tooth. We began the bridge and within a week the pain had returned. I was back on Tegretol and Toradol whichseemed to help. Once the bridge was in place I did finefor a couple of weeks then one of the teeth the bridge was attached to abcessed, I needed another root canal.I was sent to a specialist where I received the rootcanal without any shots. They used Demerol to sedate me.Once again I was back on Tegretol and Toradol. This timethey didn't seem to be working as well as before and I wasreally scared and really tired of all this pain.After acouple of months the pain was gone. I was pain free for 10 months then one night in October 99 I woke up with thatall too familiar burning,flaming pain in my teeth andjaw. I wasted no time in digging up the Tegretol, Toradoland anything else I thought might relieve the pain.It's January 2000 and I'm now on Tegretol 200 mg,Neurontin 300 mg up to 3x a day. I finally got thenerve to see a neurologist just last week and I go nextweek for a MRI. It's hard to admit that this is some-thing I may have to deal with for the rest of my life.I'm 38 years old so that could be a long time. I work atan auto manufacturing factory and have a very physicallydemanding job that requires a lot of overtime and a lotconcentration. This is really hard to do on all the medsI take. I'm afraid of losing my job because my superiorsdo not understand this disease. I am very physically fitand look like the picture of health. I would appreciateany information on new treatments for T/N or any infoon where to get support. If anyone out there has hadasimilar experience E-mail me at 4dailey@bellsouth.net.Lets help each other.
Shawna D <4dailey@bellsouth.net>
Ky USA - Satur