"You're not alone!" 1998 Guestbook Back to My Home Page Add to Guestbook

I just got my computer a week ago. Boy could I have used this info earlier. I had radiofrequency coagulation which left me with double vision. I have other side effects, but this is the one that concerns me the most. It has been almost 2 months since my surgery with no improvement. I was wondering if anybody else had the double vision for this long; all the doctors are baffled. Please write
Donna <delia28466@aol.com>
USA - Tuesday, December 29, 1998 at 10:54:25 (PST)

If you're considering a surgical option to correct the problem or even hemi-facial spasm, I'd seriously consider contacting Dr. Peter Janetta at Presbyterian Hospital in Pittsburgh. He's the man. I should know. Been there, done that, and I'm a new human being. Good luck!!!
Dr.Howard Karlitz <karlitz@earthlink.net>
USA - Monday, December 28, 1998 at 18:05:44 (PST)

TN/ATFP when reading this site I see almost no procedures or meds that have not been tried. Will write more later when I feel better. It sure helps to read the experience of others
Shirley Oakley <oakls@aol.com>
San Antonio, TX USA - Sunday, December 27, 1998 at 13:12:11 (PST)

My sister has atypical tn and reading the info on your page has been enlightening. She has had GK and two surgeries by Janetta, no success. Her only relief comes from Darvon and currently is on neuronton and elavil. God bless all of you. I pray everyday for some doctor to find some answers.
pat egan
san diego, ca USA - Tuesday, December 22, 1998 at 20:32:21 (PST)

My Mother has TN.(Middle Branch) Great pain! Had Radiofrequency Rhizotomy preformed. She feels a radical procedure was done. She is not able to return to work. She has a lot of problems with her eye and ear, right side. Wish I could find help for her.
Amy Johnson
Lutz, FL USA - Monday, December 21, 1998 at 18:46:30 (PST)

My 76 year old mother has developed TN over the last two years. We have tried Tegretol but this put a strain on her liver. We are currently on Baclofen, but the pain has returned. Are there other effective medications.?
Davud <gallaher-casey@worldnet.att.net>
Dallas, TX USA - Sunday, December 20, 1998 at 18:56:41 (PST)

Hi my name is Derek and I am a 43 (well 44 in a few weeks) and I have just been diagnosed with TN after several months of dental problems. I have found the internet so useful for finding information which my oral surgeon did not give (I am waiting on a neurological opinion) but I am curious to know if there is a support group in the UK.
Derek V Hodgson <DVHodgson@aol.comL>
London, UK - Thursday, December 17, 1998 at 11:56:58 (PST)

Thank you for all the time you put in on your computer! I am trying to find help for my mother who has pain on one side of her face. Being a polio survivor, it seems like she should have already had her share of pain. She would like to find a Doctor who will do the surgery that cuts the nerve but doesn't cause paralysis. Since I just found your page (you are good) I haven't seen any lists of Surgeons, but I will keep looking. I would welcome any e-mail that might help her. Thanks again. Diana
Diana Edgar <DEDGARD@aol.com>
TX USA - Sunday, December 13, 1998 at 14:58:40 (PST)

I had TN for 10yrs was healed by Dr Sheppard using upper cervical treatment. $285. X-Rays and 3 $35.00 treatments
James Tomasi <james.tomasi@thepentagon.com>
Norman, OK USA - Saturday, December 12, 1998 at 13:41:06 (PST)

I have TN and had surgey in August 1996 and have been pain free ever since. We also have a TN Support Group in Burnet. I have just discovered your page and I think it is the greatest!!!!!!!!
Joyce Tull <tull@tstar.net>
Burnet, TX USA - Monday, December 07, 1998 at 19:31:58 (PST)

I have just been diagnosed with TN. I've had the pain since October of this year (1998). My doctor is experimenting with different medications but thus far the pain is only a bit duller. I am so glad to find this web site...I'm still trying to figure our exactly what is TN. In December I will be seeing my neurologist for the third time and after reading the comments in this web site I can now be able to talk to her with perhaps with a little more knowledge. I really want to push for a different combination of meds as the pain is still excrutiating even with the meds (I have the pain on the right side of my nose). Again thanks for the web site.
Carol Rak <nycerak@aol.com>
Chicago, IL USA - Sunday, December 06, 1998 at 13:29:52 (PST)

I have written before... but my pain is excruciating at best. I have tried 8 different medications the doctor has prescribed - none has worked. Now she told me about Radial Frequency Rhizotrophy (anybody ever heard of it)? I have no insurance... how much does it cost? I can't work anymore - the pain is unbearable (upper right jaw) always exact same location (sometimes pain lasts for days). Can't sleep - wanted to go to the TN convention in FLorida but couldnt. I know I'm not alone - but I still hurt alone.
Linda Ottanio <lynnfromflorida@worldnet.att.net>
Bradenton, FL USA - Saturday, December 05, 1998 at 21:33:18 (PST)

Hi, I was Dx'd with TN 8/24/98. Had brain surgery in 1991, non cancerous tumor which recurred in 1996. TN pain has been coming on since 1993. Im new here sjo I dont know what to do here :) Email and let me know ,ok? Thanks Holly
Holly <celtglen@selec.net>
TX USA - Saturday, December 05, 1998 at 01:24:23 (PST)

I HAVE SUFFERED FOR 16 YEARS WITH FACIAL AND EAR PAIN. HAVE BEEN TO MANY DOCTORS OVER THE YEARS AND NO CORRECT DIAGNOSIS. I ENDED UP IN EMERGENCY AND WAS GIVEN AN INCORRECT DIAGNOSIS OF TIA. WENT BACK TO MY DR. AND THIS STARTED A WHOLE LINE UP OF TESTS. THE FINAL DIAGNOSIS WAS TRIGEMINAL NEURALGIA. I TEACH MIDDLE SCHOOL CHOIR AND SINGING AND OPENING MY MOUTH TRIGGERS THE PAIN. I HAVE BEEN OFF WORK SINCE NOV. 1 1998 AND AND TAKING NEURONTIN. IT SO FAR HAS NOT BEEN EFFECTIVE. I SEE MY NEUROLOGIST AGAIN NEXT WEEK. I AM AFRAID TO TAKE THE MORE POWERFUL DRUGS OUT THERE LIKE TEGRETOL BECAUSE I AM SO SENSITIVE AND HAVE HAD MANY REACTIONS IN THE PAST. I AM WORRIED THAT I WILL NOT BE ABLE TO RETURN TO MY MUSIC TEACHING. THE ONLY WAY I AM GETTING THROUGH THIS IS THE SUPPORT OF MY FAMILY AND THE LORD.
MARY SCHMUTZ <SCHMTZTRIO@AOL.COM>
ATASCADERO, CA USA - Wednesday, December 02, 1998 at 13:31:10 (PST)

I am 60 (Dec 7th) and first started to have "jolts" right after my 50th birthday, along the middle right side of my face. Five years ago I went to Shands Hospital and Dr Rhoten did a "nerve impact" or I think they call it the Jenetta Procedure. Pain free until recently, but now "IT'S BACK!!!" It really makes me want to cry. Tegratol causes me to have "holes" in my memory, and the operation treated me rough; headache so bad for three days I constantly thru up until they started giving me shots of some drug they give chemo patients. Anyway, I don't know what I am going to do now, but just thought I would share with "someone" who's been there. Thanks for listening. Gayle Hamblin
Gayle Hamblin <Gayle.Hamblin@CWIX.COM>
Pensacola, Fl USA - Tuesday, November 24, 1998 at 10:48:10 (PST)

Deb - you & your husband did a great job on the conference photos. Thanks! I have a question for anyone who has had a Radio frequency lesion. Corneal numbness is a side effect BUT.. Has anyone had more severe problems from their's - whereby ulcers develop. I've been told by 2 surgeons that all of their patient's who developed this condition were treated successfully. I seem to be the only one that the condition has not cleared up. Thanks again Deb.
Debby <drobarge@snet.net>
Southington, CT USA - Tuesday, November 17, 1998 at 07:34:27 (PST)

Deb...Thank you for sharing your pics from the TN conference. I met Dr. Jannetta a few years back and it's so nice to see his genuine care and participation shared among all.
Susan Kovari
USA - Monday, November 16, 1998 at 19:45:38 (PST)

Has anyone had Gamma Knife in North Carolina? If so, I would be interested in knowing where and how everything went. Thank you .......~~~Vivian
Vivian <vcook@sprynet.com>
NC USA - Sunday, November 15, 1998 at 08:01:24 (PST)

All symptoms point to glossopharyngeal neuralgia. Would like to hear from anyone who has been helped with this condition.
Genene Hill <geneneh@uswest.net>
Kaysville, UT USA - Tuesday, November 10, 1998 at 16:17:51 (PST)

Hi Deborh Enjoyed reading your Guest Book. So many of the comments sounded as if I wrote them. I don''t have TN but the pain is the same. I have had headachea for twenty five years and have been to doctors and chiropractors all over the U.S with no help. Just recently started taken NEURONTON. Thanks again Rich Hoidal
Richard H. Hoidal <hoidal@juno.com>
Seattle, WA USA - Tuesday, November 10, 1998 at 10:02:50 (PST)

I have been diagnosed with ATN for the past year now. I just found this "Your'e not alone" guestbook today. I just responded to one of the people listed in this guestbook who has almost the exact symptoms that I have. I thought for sure I was alone, but thanks to this webpage, I am not. Thank You!!!!
Birgid DiBenedetto <brigid.dibenedetto@gte.net>
Babylon, NY USA - Monday, November 09, 1998 at 08:52:10 (PST)

I have been dealing with chronic low back pain for years and I would like some comments and suggestions on treatments that may benefit me. Can anyone help?
Missy <Stamp68@hotmail.com>
USA - Friday, November 06, 1998 at 20:10:16 (PST)

Let me commend those who still have a sense of humor during their ordeals with this ga ga tn. Mine started as a tingle in my scalp about 4 years ago. The first bout lasted about 4 months...the next one about 8 months ...and the last one seems to be here to stay. They all had a peak period which settled in my left eye area. I have been on tegretol and lamictal with some tylox thrown in during the "bad" times. I guess I have the common triggers such as showers, eating, drinking, wearing my reading glasses and sun glasses, etc. I'm in a period where the pain is setting new heights. I am lucky though because I can control it by not doing anything that triggers it.....those of you who can't control it have my sympathy and thanks for sharing what has become of your lives and what might become of mine. I've read most of the comments on this guest page and one comment that really stood out was something like "If a neurosurgeon had this ailment then they might be more responsive". We all have to realize that treatment for tn is a fairly new science and we are the test subjects. At least we have some drrruuuuuugggs that help somewhat. IRISH, drop me a line and we can compare the eye area on the PAIN-O-METER. A big THANKS for those keeping this site going, and for all of "US" I wish the best!
Dan <dmcdonough@juno.com>
Orlando, Fl USA - Thursday, November 05, 1998 at 01:39:13 (PST)

My Neurologist is still working on a diagnosis but he is currently thinking TN - but I'm not sure as my pain is over the left eyebrow (sometimes a sharp pain) and top of head and mostly a dull ache that I get zero to several time a day I have just started Tegretol so I'm sure if it works or not yet I will give it a little time. If anyone else has symptoms like mine please e-mail me - from what I can tell from all the people who have responed to this web page have pain around the jaw and teeth and it is incapacitating where as mine is not it is just very annoying, is this how it starts? Please respond. Thanks
Yvette <itty2@hotmail.com>
USA - Monday, November 02, 1998 at 15:37:54 (PST)

My email address has been changed. Am using a creme that I believe may help. Email welcome anytime.
Jim Fowler <jimfowler@sprint.ca>
Oshawa, On Can - Sunday, November 01, 1998 at 05:32:30 (PST)

Hi guys, Have had TN for 8 years now, and am only 37 :( BUT I can cope and have seen some positive character growth in my hcildren as a result!! Love the TN-L and look forward to finishing my chores so I can read the list. Looking for info on MS-Contin. I have just heard about it,and am interested in anyone who has used it and any side effects that anyone might have. Have a great painless day!!! Hugs (((()))) Karin
Karin Carter <ladykarin@usa.net OR wkcarter@gte.net>
Joshua Tree, CA USA - Thursday, October 29, 1998 at 13:01:44 (PST)

I got my computer 1 week ago and the first thing I did was look up info on TN.It is one of the worst things that ever happened to me,including the death of my brother.I take Tegretol.Is anyone out there as afraid of the side affects as I,? I'm 39 and have had it for 4yrs. Probable caused by a horse accident in 1984.I found out that my Aunt of 86yrs.has TN .She told me my grandmother had it also.thanks for letting me finally tell my story to someone who knows what it is like to have your face on "electrical fire" at the hint of a breeze. JoAnne M.Oct 24 1998
JoAnne M
norfolk , ne USA - Saturday, October 24, 1998 at 20:26:02 (PDT)

I would be real interested in hearing from all who believe their Facial Pain is dental related. Cory
Cory <cory2305@aol.com>
NY USA - Saturday, October 24, 1998 at 18:59:02 (PDT)

Just this past week I had surgery (Janetta) for TN and although I am now finally free of all pain, I have multitude of side affects...numbness of lthe face and vision detriment. Hopefully some theraphy will help. Must ask Doctor next Week when surtures are removed. Unfortunately no one explained side affects..Will update you following suture removal. Thanks for lthe listening board. Bobbe
Roberta Dina <seahag@skylinknet>
Las Vegas, NV USA - Thursday, October 22, 1998 at 20:20:48 (PDT)

Hi! This is my first time at this site, It would be a understatement to say I'm impressed, I have been diagnosed with alveolar cavitational osteopathosis,AKA RATNERS BONE LEISONS. It is a infection that eats into the jawbone and causes extreme pain,While the surgical treatment I'm recieving helps to relieve the pain it is only temperary,Since so many different nerves are involved I'm not a candidate for the GK, In the past I have been unable to tolerate even the lowest doses of nerve pain medication like tegratol, Dilantin,ETC. My pain started due to Rootcanal,I would like to hear from anyone with a like diagnose. Cory
Cory <cory2305@aol.com>
Niskayuna, NY USA - Tuesday, October 20, 1998 at 06:45:07 (PDT)

Hi! I just clicked your website from TN list letter you wrote. Thanks! I didn't know about your site.
Cheryl Wise <imcheryl@hotmail.com>
Fort Worth, TX USA - Sunday, October 18, 1998 at 22:06:02 (PDT)

Deb, You've been such a ray of sunshine to me for the last few years. I thank you for many who read your page and do not comment. I have had TN for 25 years, and there is no cure for me now. My condition grows more complicated as time goes on. But I learn new things every day, and I am thankful that with this pain, my Lord has taught me to use it as a weapon, and as a tool to help others. I have learned not to fear the pain, and so I picture my body (face) as a war zone and I, in my spirit have learned to co-exist with the ENEMY. I pray for those who have TN and I am thankful that so many strides have been made to help those who are in the grip of this terrifying pain. My message to those of you who are discouraged is this: You may think that there is not much being done, but I have seen such strides made in the last 25 years. When I was first diagnosed, I was in my 20's and my children were very small. I thought I was literally going out of my mind. I was silent about the pain for a long time, and ashamed of it. Be thankful that now there are those who know and share what you go through. Do learn all you can about the pain that assails you. It helps a lot when you know your enemy. Thanks again, Deb, and your wonderful husband, for keeping this page open to those of us who Cling to the Lord and live in the knowledge that His right hand does hold us up under all affliction. Truly, none of us is alone. Love to you, Coleen
Coleen Wilson <gwilson@trib.com>
Worland, WWWY USA - Friday, October 16, 1998 at 07:33:28 (PDT)

I am going to Dr. Janetta in Pittsburgh in November and am wondering how other people's experiences with the Janetta procedure went.
Penny Hanes <mercyhurst.edu/phanes>
Erie, pa USA - Thursday, October 15, 1998 at 07:20:14 (PDT)

Great to find this site, I have had TN for around 12 years,I have been to all kinds of specialist and taken tegretol.neurotin,bacflon amitriptiline,doxepin,flexeril,methacarbanol,which none of those helped at all.I now take prozac, xanax,synthroid(for hyperthyroidism),depokote,prevacid.I also have fibromyalgia,last week I went to a pain clinic,they gave me an appointment to come back in 30 days.At that time they will try injections into the tender spots.I really think if we could find drs.who has this terrible,awful pain,maybe then they wouldn't care to give us something that will help us.Since this is chronic pain they don't want you to have naracotics,but I haven't found anything else that will help. If anyone can help me,please e-mail me at romanse@mrtc.com Again thanks again for this helpful site...
Lucy <romanse@mrtc.com>
ky USA - Tuesday, October 13, 1998 at 21:47:24 (PDT)

Here's the complete summarized story of my ten year old daughter with glossopharyngeal neuralgia: It started in October 1997 with severe ear pain in her right ear. For a couple of weeks she was treated for an earache with antibiotics which did nothing. An ENT doctor did a CT scan and said her ears were fine and referred us to a neuroligist in Birmingham, Alabama. Three neuroligists, a neurosurgeon, an ENT, two CT scans, two MRIs and two months later the pain has become unbearable. By mid December just touching the hair on her head behind her ear caused severe pain. The cold air of winter triggered the pain so she had to remain indoors. Christmas came and went with us still searching for answers. In mid January we were told her problem was psychological and there was nothing physically wrong with her. No medications worked. You name, we tried it; tegretol, neurontin,and many others. By now she could not eat solid foods. Swallowing anything solid caused severe ear pain. She lived on Boost, Ensure, liquid vitamins, liquid herbs,juice, milk and anything else liquid. However, on top of this everything had to be room temparature because cold liquids also caused the pain. We tried a chiropractor, a massage therapist, a hypnotist, and an accupuncturist. The accupuncturist searched the WEB and led us to Pittsburgh and Dr. Peter Jannetta for surgery. In March of 1998 a team of neurosurgeons did microvascular decompression on her TN and GPN and the Vagus nerve. They said she was the youngest reported case that they were aware of. She still had ear pain for six weeks post operative. The ear pain went away and then she developed a strange sleep disorder similar to narcolepsy which she still has to this date. She falls "asleep" numerous times a day which has her homebound and being taught school at home. The sleep "spells" only last a few minutes and she wakes up with a bronchitis type cough and gasping for air, which triggers that same ear pain. It's an endless cycle that is taking a toll on her emotionally. We are hopeful that this will all go away soon. She still has pain when she eats and drinks anything cold. Eating is not as painful as it was, but the cold stuff is still out of the question. She has been an inspiration to us as well as many others in our community for her strong will and determination. She is a real fighter. If anyone has any similar symptoms to Amy's we would very much like to hear about it. We are waiting for a call from Dr. Peter Jannetta in Pittsburgh any day now. We'll keep you updated on her progress. Charles May- Tuscaloosa, Alabama (205)344-5263 charlesmay@prodigy.net
Charles May <charlesmay@prodigy.net>
Tuscaloosa, AL USA - Wednesday, October 07, 1998 at 19:24:42 (PDT)

My ten year old daughter has glossopharyngeal neuralgia and had surgery in March 1998 in Pittsburgh. The surgery was a success but she still has some pain when she eats and has also developed narcolepsy (a sleeping disorder). We want our normal life back. The doctors tell us we just need more time for healing.
Charles May <charlesmay@prodigy.net>
Tuscaloosa, AL USA - Tuesday, October 06, 1998 at 20:53:10 (PDT)

This is a blessed site, especially since pain management has never been addressed, with the sufferer in mind! Is there a site for nerve pain due to crushed nerve in neck, and after 2 spinal/cervical operations to relieve stress on nerve, pain is still present. Neurontin and percocet barely make life livable.
Joan <LadyOwood>
ny USA - Saturday, October 03, 1998 at 20:36:31 (PDT)

Hello, i am 24 years old and have just been diagnosed with trigeminal neuralgia. i graduated college in dec and have been working for seven months now. i have had four serious pain episodes, three teeth removed and i have had a maxillofacial surgeon stab one of my facial nerves (happened before the pain episodes) The information that i have found has been disheartening, i don't understand how i am going to live with this and work fourty hours a week. It just seems to be getting worse. i am in tears.
Kim <kjwalker@hotmail.com>
Sutton, WV USA - Thursday, October 01, 1998 at 20:05:15 (PDT)

I am 40 years old and just diagnosed with glossopharyngeal neur. I am about to see a specialist at Toronto Western Hospital and hope he can provide me with some answers. The pain comes and goes but when is is acute, I can not swallow or tilt my head forward. I have yet to try any pain medication but understand the only drug treatment is tegretol which I do not want to take. I was happy to find this web page and will keep checking back for new information.
MJK
Guelph, ON CAN - Thursday, October 01, 1998 at 17:22:56 (PDT)

This message is for Tina Gray and others who suffer from GPN. After approximately 12 years of suffering from severe pain in my ear and throat from GPN, I had MVD surgery at UC San Diego, Thornton Hospital. Nuerosurgeon, John Alksne, performed the surgery July 1, 98, and I have been pain free since that time. I did have some minor side affects which have subsided or completely disappeared, and I feel better than I have for many years. I consulted with many Neurosurgeons before finding Alksne. He was great and so was the entire experience. I would highly recommend him for this type of surgery. He found an elongated artery which had coiled tightly around the 9th nerve, and he successfully seperated it from the nerve. Mary let me know if you get this message. I am able to receive your e-mail and would be happy to answer any questions anyone one of you might have.
Rob Robison <robr@goldrush.com>
Copperopolis, CA USA - Thursday, September 24, 1998 at 07:44:39 (PDT)

Rob Robison/Leslie Wilson>>>> Have tried mailing you both re: GPN not sure if you are getting my mail????
Tina Gray <agray@techplus.com>
Brandon,Manitoba, Canada - Tuesday, September 22, 1998 at 13:42:18 (PDT)

Thank you soooo much for your website....my friend's dad has Trigeminal Neuralgia. Your site was an amazing source for information. Thanks again for your hard work...please keep it up ! Debbie Davis
Debbie Davis <DoodlebugD@AOL.com>
Upland, CA USA - Saturday, September 19, 1998 at 12:06:33 (PDT)

Hi Heather in Northville, Michigan. Tried to e-mail you but your e-mail address is apparently not correct as it keeps coming back. I hope you see this and can supply a corrected address. Thank you. Mary
Mary
USA - Monday, September 14, 1998 at 06:51:07 (PDT)

Would like to hear from someone with glossopharygeal neuralgia. So glad to have found your site.
Tina Gray <agray@techplus.com>
Brandon,Manitoba, Canada - Sunday, September 13, 1998 at 21:57:59 (PDT)

I too believe that I have TN or ATN. Waiting to see the neurologist next week. I agree that the doctors seem to be clueless about this disorder. I have pretty much diagnosed myself through desparation and research. I also started my journey at the dentist thinking that I had some kind of abcess or nerve damage. The dentist assured me after x-rays and examination that my teeth were not my problem. He did however suggest that tension or clenching of my teeth at night time might be aggravating my jaw. Nine months have gone by and my pain is getting more frequent and more severe. The ibuprofen is not helping much anymore. Hopefully the neurologist will be up to date with this problem and be able to give me some relief. This is a remarkable site. It helps to know that we are not alone.
sandy murray <rayd812964@aol.com>
fl USA - Wednesday, September 09, 1998 at 19:38:07 (PDT)

I have had TN since Feb 1996. I had gamma knife which was unsuccessful. I applied for Social Security, as I am only 37 and a single parent. Has anybody out there received Social Security due to this tortureous illness?I can only work part-time from my home due to pain and medications. I do medical transcription, I had to switch my career due to this illness. TN has turned my life upside down. mail welcome from TN suffers.
heather <ifnot4y@gateway.net>
Northville, MI USA - Tuesday, September 01, 1998 at 10:16:13 (PDT)

PLEASE try capsaicin cream! It has been a miracle for me. The pain stopped after just one day of applying the cream! The cream is not very expensive, and is available without a prescription. There are no side effects except a slight burning with the first few applications. It can be used forever. Please try it--maybe it will work for you, too. I am taking NO DRUGS. I hope this lasts, I feel euphoric!
Barbara Martin <thabar@hotmail.com>
London,, ON Canada - Monday, August 31, 1998 at 07:56:35 (PDT)

I fight "the beast" daily. I have had two Janetta procedures done and still I have pain. The last time they selectively severed fibers inside the TN. I still feel pain. I feel like I'm all alone. Everyone I ever talk with has had relief after the first surgury. My neuosurgion told me that there's nothing more that he can ever do to help me.
Beth Hammack-Danley <bhammack@tenet.edu>
Belton, TX USA - Wednesday, August 26, 1998 at 10:53:01 (PDT)

I haven't been diagnosed yet, but after three days of paralyzing pain, no sleep, not eating, and absolute dispair of the darkest kind, I found this site. I am so grateful for all the information and personal stories of others who are have suffered so much. I know that I have TN, I have no doubt whatsoever. I have also have lupus (discoid and systemic) and I thought I understand pain, but TN is something I was not prepared for. It is beyond description. On a lighter note, it seems I picked the right city to live in while developing TN...I know who Drs. Jannetta and Takashimo are, if medications don't work. I feel hopeful now, being empowered with information, and now the next obstacle is getting my doctor to listen. If anyone would like to email me, please do. I am a good listener, and believe me, I understand the pain all of you are experience. God bless you all. Lane
Lane Meyers <lanemeyers@home.com>
Pittsburgh, PA USA - Monday, August 24, 1998 at 05:23:58 (PDT)

I began having TN pain in Nov. of 1996. Over the next year and a half it got progressivly worse. I had severe stabbing pain in my upper and lower jaw, the left side of my tongue, my ear, my face and my lip. There were many days when I could not eat, drink or speak. I often had to get on my hands and knees and let the saliva run from my mouth because I could not swallow it. This was horrible agonizing white hot pain. I saw 9 different doctors, oral surgeons, a neurologist, an ENT, several emergency room visits. I was given many drugs, including baclofen, tegretol, neurontin, dylantin, and pain killers which included flexeril, lortab, tylenol 3, valium, motrin. Nothing worked and I developed an allergic reaction to tegretol. I did not have medical insurance and I lost everything trying to get some help. I was finally referred to a neurosurgeon in Salt Lake City named Dr. Ronald Apfelbaum. He performed the MVD surgery on me 6 weeks ago and I have been pain free since then. I found the surgery to be very invasive and have experienced many side effects but it was well worth the risks. The doctor found a substantial artery pressing into the back of my trigeminal nerve. This disease changed my life. I got married to a wonderful man who helped me get medical insurance and stood by my side the entire way. I went through suicide thoughts as an option to end the pain. I was referred to a psychologist because certain doctors thought it was all in my head. Well it was! And it took the operation to fix it! If you have this problem, get directly to a neurologist or neurosurgeon. Do not stop until you get help. I know how painful and frustrating this thing can be. Don't give up! I was amazed when I read of others accounts because I was convinced that I was the only person to have this problem! It is very rare and many have never even heard of it, including myself. For anyone going through this now, you have my thoughts and prayers, and if there is anything I can do to help, please let me know. Holly
Holly Snider <hollyh@altavista.net>
USA - Friday, August 21, 1998 at 10:00:42 (PDT)

I THINK I may have TN...Raging and agonising pain on right side of face.Started after antibiotic treatment for impacted wisdom tooth (lower right jaw)which improved but THEN - to my horror -I started to get severe pain in a tooth, top right. I had recently broken a veneer on this tooth and whilst drinking an icy fruit juice had experienced excruciating pain the week before. So I assumed I just had a very sensitive exposed nerve. However, I have visited the emergency dentist 3 times in 48 hours (Its the weekend - of course!) and the emergency doctor for pain relief as I haven't been able to sleep properly for four nights as the pain wakes me up.I had a root canal filling this afternoon and started to relax thinking the problem was sorted. Two hours later when the anaesthetic wore off the pain went off the Richter scale again, and I am going to cancel a holiday I had planned with my two sons for tomorrow as I am scared to move too far from home at the moment - the Canary Islands is a long way from England! I have not been diagnosed by anyone but myself yet, but I've been surfing the good old net for three hours now and I can identify and relate to all sufferers of TN. The dentist just mentioned it in passing today... I can already see how the pain could be in charge of me instead fo me being in charge of IT. I didn't know such off the scale pain existed - and I 've had two babies! I imagine that the sheer emotional and physical wearing down of such pain might lead to despair and depression. Everyone around me is being sympathetic as I rock to and fro and moan when it starts up, but even though they love me I can sense a "switching off" because a)What can they do? and b)If you haven't had this pain I don't think its possible to truly understand. Well, its good to know I am talking to other members of the exclusive "off the scale" pain club! I intend to beat this! I'd love to here from you. And thankyou for an excellent page. I'll help and contribute Kathy G xxx
Kathy G <ktlgold@mcmail.com>
Bournemouth, Dorset UK - Sunday, August 16, 1998 at 14:22:16 (PDT)

Inez recommended this to me; I like what I've seen, so far; Sorry about the moments of panic that I provided recently!
Lynell Caton <ldcaton@leaconet.com>
Hobbs, NM USA - Tuesday, August 11, 1998 at 14:23:03 (PDT)

My husband is suffering terribly with TN. He is on Tegretol and Baclofen but seems to be getting worse. The neurologist doesn't seem to be taking this too serious. We get lots of run-around and little help. I am willing to take him anywhere for help but I want to use the best. If anyone knows of a good Neurologist treating TN in the St. Louis area please contact me as soon as possible. I am also open to other suggestions! I've got to be able to help Gary!
Donna Tilley <greentree6@juno.com>
St. Louis, MO USA - Monday, August 10, 1998 at 07:04:31 (PDT)

Diagnosed with TN in September of 97. Went the usual route with MD, then referred to neurologist. They kept me on drugs and all I did was sleep. I gave up on the drugs and went into remission in February. Now it's back. Does anyone know of a doctor in the San Jose Bay Area that is TN knowledgable?
Cathy Bauer <Bauer@best.com>
SJ, CA USA - Thursday, August 06, 1998 at 18:03:50 (PDT)

Hi again... Linda back! Finally got rid of my life-threatening rash due to Carbenzamine. New Doctor put me on Neurontin... Anybody ever try this drug before? Did it work for TN? Any other suggestions I may try for constant facial pain? Here's another website you could look at if you want: http://www.suresite.com/ct/a/addiction Email me with suggestions please!!!!
Linda Ottanio <lindafromflorida@worldnet.att.net>
Bradenton, FL USA - Tuesday, August 04, 1998 at 11:48:01 (PDT)

No we are not on internet - BUT here we are??????????? Hi, Mike, Deborah, Suzanna, Christina, Dottie, Lucy and any others! You all are very, very special to us.
don-effie <you guess>
Port Orchard, WA USA - Sunday, August 02, 1998 at 14:52:06 (PDT)

Very nice! I to suffer from intractable lumbar pain, from a work related accident. Have had surgery, now living with titanium supports, and fussion. Anyways at my home page anybody can join the chronic pain web ring. Have you seen the chronic paincoalition@onelist.com Take care. Bruce
Bruce MacElrath <bruce@w3f.com>
Where the hell is Fort Mohave, AZ USA - Friday, July 24, 1998 at 22:23:15 (PDT)

Am having more frequent pains with tn. Considering gamma knife. Any comments would be appreciated.
Charlotte Alterman <richalt@sprintmail.com>
San Antonio, TX USA - Thursday, July 23, 1998 at 21:21:54 (PDT)

Enjoyed my visit. beautifully done! everything was Just beautiful! Pookie
Pookie <glenpat@bellatlantic.net>
Milford , DE. USA - Tuesday, July 21, 1998 at 19:37:29 (PDT)

Hi Deb, using this great Web Site to ask a question on Traumatic TN. Would love to hear from those whose pains BEGAN with Dental Work! Would like to know what procedure they had and if they can relate pain onset to the dental procedure or to the injection. Would also like to hear description of the pain. Would like to know if any had Gamma Knife. Relief? Another type of surgery? Thanks so much.
M. Whitney <infiniti@flash.net>
TX. USA - Tuesday, July 21, 1998 at 16:10:05 (PDT)

My web page is about My Cocaine Addiction (that started out as a need for numbing the area where my jaw is in constant pain)... that is no excuse I realize but it does stop the pain for a short while while I am using. I admit its nice to know I'm not alone - but not nice enough to want to live another 20 years with pain. Wish I knew a way out. I wish I could get some relief from the excruciating pain that I have had constantly for the last 5 years - I have had several teeth removed in effort to stop pain (but of course all that did was remove my teeth... pain still there). I tried carbenzamine (and although the pain was completely gone for 3 weeks)... the side effects were devasting... No one knew what was wrong with me (I woke up one morning with 2-3" raised splotches all over my entire body). I went to the emergency room - and they put me in a separate room because I was frightening the other patients... well if they were scared, imagine how it made me feel. They did blood tests, and told me I had severe a severe liver disease and that I may not live. After stopping the medication (finally a Dr. at another hospital) told me to stop any and all medication I was taking. It finally started to go away (but it lasted for 3 weeks... and 3 different doctors couldn't help me). Now 6 weeks later, my skin is still peeling from my body (and now I am allergic to Ibuprophen), and can't take aspirin (and it seems nobody can help me). I am willing to try any new drug treatments or experimental drugs... I am desperate... Don't want to live like this forever. and definitely do not want children (since this is hereditary) . wouldn't want to subject any children to this untreatable disease.
Linda Ottanio <ottanio@usa.net>
Bradenton, FL USA - Sunday, July 19, 1998 at 13:36:34 (PDT)

Just One more thought! I realize that some TN is caused by degenerative diseases like MS. In those cases the nerve shealths are woren down by the disease itself . And not a misplaced artery! Lynn
Lynn Erickson <pablb@fayettevillenc.infi.net>
nc USA - Sunday, July 19, 1998 at 12:51:00 (PDT)

I forgot to add to my previous guestbook response this feeling: If the other options aren't working, doesn't it stand to reason that they aren't fixing the problem? I have read horror storys of these procedures that don't address the undrelying problem. What is up with the medical community? Lynn
Lynn Erickson <pablb@fayettevillenc.infi.net>
NC USA - Sunday, July 19, 1998 at 10:02:57 (PDT)

My Twin sister has TN. For about 3 years. She did the meds. She had bad reactions and not alot of relief. She found a great neurosurgeon who explained this to her; There is an artery laying across the Trigeminal nerve. It doesn't show up on any cat scan or MRI. But he knows it is there or maybe a small tumor too small to be seen.He said lets fix the problem not treat the symptoms. She had the MVD and they found an artery laying across the nerve. It had worn a groove in the nerve. This artery was 1 inch from where it was suppose to be.He moved the nerve and placed some kind of material between them. She is pain free. Thank God she found someone who understood the concept of this whole thing! As the nerve was being damaged by the artery , her pain was becoming worse and spreading. 3 years ago she thought she had dental problems. Then sinus problems. Well, My dad, is a doctor and diagnoised her with TN. I did alot of reasearch and she found Dr. Breeze out of Denver Univer. (303) 399-1211. Good luck! Lynn
Lynn Erickson <pablb@fayettevillenc.infi.net>
NC USA - Sunday, July 19, 1998 at 09:55:27 (PDT)

Robert Katz, your email address doesn't work. I have someone in Las Vegas that you can email. Please send me a private email and I'll forward to them.
Deborah <deborah@creps.org>
USA - Thursday, July 16, 1998 at 20:14:33 (PDT)

Thanks Deb for the great web site! My husband Jim has had tn for 7 years now. He has had several procedures done throughout the years with only temperarily relief from each. Most recently he has had an MVD and has been pain free for 2 mos now. We hope and pray this one last! Would love share info, please feel free to e-mail us anytime.
Camille Sanders <Js89128@aol.com>
Las VEgas, NV USA - Thursday, July 16, 1998 at 13:30:49 (PDT)

Thank you for providing this Guestbook and website. It's great to share with others and gain information on this affliction. I had the microvascular decompression surgery 2 years ago and have been pain free since then. I pray that it stays that way! I had the procedure done by Dr. Jeffrey Brown at the Medical College of Ohio. If anyone needs a penpal or information on how my surgery went, feel free to email me. Take care and be well. (-:
Jeanne Peschel <kitty@glasscity.net>
Rossford, OH USA - Thursday, July 16, 1998 at 02:44:18 (PDT)

Is there anyone in the Vegas area suffering from this disease? Has anyone out there found relief?
Robert Katz <sagsak>
Las Vegas, NV USA - Wednesday, July 15, 1998 at 19:50:46 (PDT)

My wife (48) is on a quickly declining path of despair. What began about five years ago as headaches has now increased to continuous unbearable bouts of facial pain. She says it feels like having a toothache in every tooth at the same time combined with a migraine headache, earache, jaw pain and migrating pains from the top of her head to her neck line. What were once infrequent attacks now happen as much as four or five times a day. During these attacks, I can see her face actually grow more and more swollen until it is nearly twice its normal size. Although she attempts to be brave about the pain, the tears that roll down her face are telltale. And yet she continues to try to maintain her active role as mother and grandmother, entrepreneur with our family business, and part-time government employee. Her pain is worse in the cold, damp weather; and smells such as exhaust fumes, cooking, wet grass or dirt — and tension — trigger the attacks. She has been diagnosed by doctors as maybe having any one or more of an assortment of possible afflictions including acute sinusitis, sphenopalatine neuralgia, atypical maxifacial neuralgia, trigeminal neuralgia, disorder of the "5th nerve," TMJ, and others. Consistently referred to by one doctor to another, she seems to have become a puzzle to them; and a definitive diagnosis for her problem apparently evades them all. My wife has been put on a myriad of pills from baclofen and bioxin to neurentin and tegradal. For the pain, she is given oxycodene and hydrocodene. The former medications had short-time limited success; the pain killers render her useless, afraid and unable to do much more than lay down. She now avoids going to family gatherings, to movies, or even to dinner, always afraid of a sudden attack. The pain continues to grow worse. This is a woman who nearly died of cancer 20 years ago but fought the pain and the surgeries to survive. She handles pain well. But this continuing, severe and debilitating pain is weakening her will. Her active family, business and social life has been reduced to a choice between living in constant excruciating pain or living a drug-induced agoraphobic existence. Such choices would temp even the most elan vital to question the reason for living. I have read the various files in this web site and am hoping that some of you give me advice based upon your personal or professional experiences that can help my wife. Is there a clinic that specializes in this field? Are there doctors who have expertise in this medical area? I need to do something soon for her. Please help with your ideas and suggestions. I am currently preparing a diagram and further information about her symptoms based upon the information and language I have retrieved from the web. The new information will show and describe how the pain begins as a "mask" from temple to temple across the eyes and nose (sometimes beginning with the nose) and this is the primary pain. It then migrates quickly down the face and cheek area (secondary) and moves through the back of the neck and then front to the shoulders (last area). This is all one event with the pain burning and extremely severe and "like a pressure devise squeezing" at the primary location; "dull squeezing pain" at the secondary location; and a "tightening" pain at the last area. When all three events happen, they become pulsating and throbbing. At that point she is sensitive to light, sounds are distorted, and smells are intensified. The attacks occur randomly and happen once to about ten times each day. Of tantamount importance now is to find a hospital or clinic that can make a definitive diagnoses and then offer solutions. We have good health insurance coverage, and it doesn't matter where the speciality center is in the U.S. I can be reached at e-mail at Rbk02@aol.com or by fax to (516) 281-4750.
Rich Harris <rbk02@aol.com>
ny, USA - Tuesday, July 14, 1998 at 17:16:47 (PDT)

Thanks for this great website!
Marty Ward <gardengal6@aol.com>
Fenton, MI USA - Thursday, July 09, 1998 at 18:18:46 (PDT)

It's a relief to know I'm not alone!
phyllis jones <gabbyj@webtv.net>
USA - Tuesday, July 07, 1998 at 06:09:11 (PDT)

THANK YOU FOR PROVIDING THIS SERVICE TO THOSE WHO HAVE BEEN DIAGNOSED AND ALSO FOR THOSE LIKE MYSELF WHO HAVE LIVED WITH IT FOR YEARS AND NEVER BEEN DIAGNOSED. HAVE APPOINTMENT WITH MY NEUROLOGIST AT MAYO CLINIC IN AUGUST AT WHICH TIME I CAN TELL HIM WHAT IT IS THAT I HAVE. I DON'T KNOW WHAT COULD BE WORSE THAN NOT KNOWING WHAT YOU HAVE. AT LEAST NOW I HAVE SOME DIRECTION. THANK YOU AGAIN.
RUBEN SALCEDO <THEVIEJO@WORLDNET.ATT.NET>
GOODYEAR, AZ USA - Sunday, July 05, 1998 at 22:50:35 (PDT)

Thanks for putting this page together!
Mike <mikew20@juno.com>
KY USA - Thursday, July 02, 1998 at 08:43:50 (PDT)

Great site...I've added this to my favorites. I have MS and (you could have guessed) TN. A good attitude always seems to help. Later, Larry
Larry <ldrwf@intrnet.net>
IL USA - Tuesday, June 30, 1998 at 15:17:48 (PDT)

Sorry, my E-mail address is incorrect in the previious message. This one is correct.
Doris Brady-Barrett <d-barrett@mci2000.com>
Atlanta, GA USA - Sunday, June 28, 1998 at 08:53:15 (PDT)

I was diagnosed in October, 1997 with TN after only two months of pain. I was fortunate to have a GP that was familiar with the condition. He sent me to a neurologist whoi put me on Tegregol. I started at 300mg a day and by March, 1998 was up to 800mg with 30mg of Baclafen. When I was still getting severe breakthrough pain at that level of medication he wanted to refer me to a neurosurgeon. A nurse friend suggested Dr. Goodman at Piedmont Hospital in Atlanta who is an expert at gamma knife surgery. I had the surgery 9 days ago and can already feel the difference in the pain. He tells me that it can take up to two months for it to take full effect. I would be happy to answer any questions about this procedure. It is a non-invasive surgery that has a high success rate for this condition.
Doris Brady-Barrett <d.barrett@mci200.com>
Atlanta, GA USA - Sunday, June 28, 1998 at 08:50:04 (PDT)

This is a test
Test <michael@creps.org>
SJ, CA USA - Friday, June 19, 1998 at 20:52:05 (PDT)

I am realy happy finding this web site I also have been suffering with this for more than 3 years. I have been diagnosed with tmj and also seeing a psychiatrist. On May 21,1998 I will have surgery on my trigminal nerve and removing a brain tumor. If you could please send me a letter of encouagement I am very nervous on my surgery.Thanh youl
Rose Jalette <rosej@hotmail.com>
Manville, RI USA - Friday, May 15, 1998 at 17:08:29 (PDT)

I was recently told by my GP that I may suffer from TN. SinceI have only a stitching pain, which comes and goes, in my left ear Ithought it would just be an ear infection.I was wondering if anybody experienced the same pain and wasdiagnosed TN.Please let me have your comments. Thanks a lot.
Isabella Gast <peter.summo@wacker.de>
London, England - Tuesday, May 05, 1998 at 12:29:33 (PDT)

Spring, 1987. Consider this: I had been having what I thought was an infection in left eye. I awoke one night to what I was sure was my wife trying to stab me in my left eye. Only, the pain was also hot, electrical, stabbing, etc. Needless to say, I thought this must have been one hell of an infection. Cut to five years later, six different doctors, several different opinions and many more medications. I'm told it's TN, but, no one will say for sure, because it's in my left eye. No one get's it there I'm told. I find being the rarest of the rare TN little comfort as I struggle to hold on to a job and a failing marriage. Cut to 1997: Out on permenant disability. Wife leaves; decides I'm on a one-way ticket to basketcase land. Pain becomes so great in winter, I can't talk for over a month. No meds make much difference, but, I do have a nice supply of percocet, with the promise of morphine when it gets too great. Sounds like a nice steady life as a junkie, but, I don't like the way this movie/life/plot is going. In dire need of change, I check out acupuncture. (Helps to be living in the New Age captial of US) After a month, I can talk. A few months more, I'm almost pain free. Now, almost a year and half, I go once a month for treatment. This is the longest I've been pain-free in more than a decade. I am now working at a rather stressful job and loving life. And so far, I'm holding together. I had major sinus surgery, throat surgery, at one time took enough tegratal to kill a normal person, have tried almost every drug and drug combination known to work for TN. None did. I don't admit this will work for everyone, but, it's worth a try. Faced with the alternative I was contemplating, which involved either a 45 or an overdose on meds, I'm quite glad I looked outside the mainstream. It never hurts to use alittle creativity.
Charlie Lytle <dharmamtn@AOL.com>
Cherokee Reservation, USA - Monday, May 04, 1998 at 19:31:44 (PDT)

Your site is a blessing to many who suffer from various neuralgias. I was diagnosed with Glossopharyngeal Neuralgia (9th nerve) 11 years ago and have been to many of the "top Doctors" who surgically treat this rare and very painfull disorder. My pain starts in the ear and as it progresses it radiates to the throat. I compare the pain to putting a hot poker in my ear and connecting it to an elictrical cord. I have remission periods of from 1 1/2 or 2 years, but have been told that the severe pain will eventually become constant. I would be interested in communicating with anyone who has GPN or who has had surgery for same. I have an HMO for insurance and I'm concerned about finding a Doctor sufficiently experienced for this dangerous and not always successful surgery.
Rob Robison <robr@goldrush.com>
Copperopolis, CA USA - Tuesday, April 28, 1998 at 13:59:08 (PDT)

As a TN sufferer for 6 years now (I am 56) what I seein all our comments is a line of common threads: dentistproblems; stress; depression; suicidal thoughts;"darkestperiod of my life." I think I have gone through all of thatand wonder how much longer I can work. Have hadoral surgeon cut the nerve but still have to be onteg. and neurontin. My greatest fear is that I won'tbe able to work. I am a teacher and rely on speaking.This is a dreadful disease.
Barbara Murray <bmurray@totcon.com>
Fl USA - Saturday, April 25, 1998 at 13:55:49 (PDT)

Hi, I'm not sure if I have TN or not. In December I started having numbness on the right side of my face and a headache. The doctor told me I had a sinus infection, and treated me accordingly, it didn't go away. Then I went to an ENT, 2 of them, one had a sinus xray done, no sinus infection. In the meantime, I started having earaches, the ENT gave me shots in my mouth, this relieved the pain. He did this 4 - 5 times, and finally suggested I see a Neurologist. He did all kinds of tests (EEG, MRI, Catscan) and determined something was wrong with the Trigemenial nerve. But did not call it TN. He then sent me to a Neurosurgeon, he looked at my films and told me he wanted to wait 3 months to see what happens, if it gets worse to come back before hand. My face is numb, sometimes I experience a tingling, but I haven't had any pain, no headaches or earaches. Is this how TN starts out??? I thought I had a tumor and was going to die. Am I seeing the wrong doctors, because they can't seem to diagnose this. I'd appreciate any comments, if I have TN, I want to know, and it's good to know there are others who have this. I have never been sick (I'm 40) and this is driving me crazy.
JoAnn Purkey <JoBruns@aol.com>
Rochester Hills, MI USA - Friday, April 24, 1998 at 15:52:28 (PDT)

I am 36 yrs. old and was first diagnosed with TN in 1992 after I went to the dentist and told I needed teeth pulled and a root canal. Then I was told to go to ENT, where I was told I had a deviated septum. Had that surgery and after 1 week the pain resurfaced. From there I had spinal taps checking for MS, numerous MRI's and cat scans. All which were to no avail. From there I began taking Tegratol but after 3 days I had an allergic reaction so I began takinf Dilatin. 100mg 3X a day Pain was still severe so my dosage was upped to 600mg a day, which after a while went toxic in my system. I stopped taking Dilatin on my own and have just been living with the pain which up until recently has not been that severe. (2 yrs) As of Easter, I have experienced the excruiating pain on my right side and it is now starting to develop on my left side. I find the only way to help the pain subside is to be still and quiet. I can't talk, touch my face, etc. I have tried going to the chiropractor and am wondering if anyone else has tried this? Also, has anyone had hair loss from either taking the medication or just having TN? I have been experiencing excessive hair loss for the past 3 yrs. I am considering having the MVD done if someone can e mail me any information on it. I am glad I am not alone and do not wish this on anyone. Look forward to hearing from you.
JOYCE RIOUX <HARSALON>
TAUNTON, MA USA - Wednesday, April 22, 1998 at 20:47:44 (PDT)

Thank you. My brother-in-law is suffering from tri-genital neuralgia, V cranial nerve and is looking at the option of surgery as the pain is getting too much to bear. He has been on medication for some time and the dosages have been increased to the point that he can't continue. I read with the interest of so many that have found relief in a number of ways.I would appreciate any information that I could forward on. My sister and brother-in-law live in Neosho, MO.(Jerry & Erma Hill)Thank you in advance for your interest.
Carol Branham <cdbranham@hotmail.com>
Nevada, MO USA - Wednesday, April 22, 1998 at 17:49:29 (PDT)

My husband has TN. It came on in July of last year (97). He has been taking Tegratol and Neurontin faithly to manage the pain. Just 2 weeks ago, a friend introduced him to a dietary supplement. After 2 weeks of taking this natural product faithfully, the pain "is gone". He stopped taking the Tegratol/Neurontin 2 days ago, and is still completely pain free!! You do not know how excited he is!! He can eat and no pain!!
Barbara Neville <nev6906@aol.com>
Dublin, CA USA - Monday, April 20, 1998 at 08:36:06 (PDT)

THANKS FOR BEING HERE. I WAS DIAGNOSED RIGHT AWAY, A FEW YRS. AGO. ON Rx EVER SINCE. WITH ACCUPUNCTURE I WAS ABLE TO REDUCE Rx BY HALF. RIGHT NOW I'VE GONE INTO REMISSION, AGAIN. TJN DEFFINATELY DOES MAKE YOU VERY DEPRESSED !!!!! AND SUICIDAL !!! BUT I CAN'T TELL YOU HOW HAPPY I'VE BEEN WITH THE HELP OF MY ACCUPUNCTURIST AND THE HERBS HE'S HAD ME TAKE !! PLEASE GIVE IT A TRY BEFORE RESORTING TO SURGERY. AFTER READING SOME OF THE COMMENTS FROM OTHERS, I THINK I MUST BE LUCKIER THAN MOST. YOU ALL WILL BE IN MY PRAYERS.
SHIRLEY DAVIS <NONE . I'M @ WORK. NO P.C. @ HOME>
SAN DIEGO, CA USA - Sunday, April 19, 1998 at 01:30:36 (PDT)

I found your site very helpful and informative. I was diagnosed with TN after numerous trips to Dentists and doctors. My situation is very similiar to the ones I have read at you site. I had a root canal done with no help, I had a bad reaction to tegretol, and had no luck with numerous other medications. I went to a pain clinic and had three nerve blocks scheduled to diagnose the source of the pain and after a Maxillary nerve block my pain went away for 10 months before returning. Eight more blocks were done with no results. When trying a glycerol injection I was told a they punctured my sinus membrane so I decidedto stop these blocks. I went to another neurologist that informed me of the MVD procedure. He had me see an Oral Surgeon and recommended getting the nerve stripped prior to trying the MVD. I had seen a reference to Ratners bone cavities on one of the websites and brought this up to the oral surgeon. He saw nothing on the Xrays but said he could perform exploratory surgery on the area I had pain. He found a large bone cavity that didn't show up on Xraysand cleaned and packed it antibiotics. The pain got alot worse after that. He checked it again to verify everyhing was gotten in the bone cavity. My oral surgeon recommended exposing the nerve and putting alchohol on it to kill the nerve. One week after this procedure the pain went away for six months. He did the same procedure again which lasted almost five months. Its back again and the injections haven't worked. I am scheduled to have the nerve stripped in a couple of weeks. If it doesn't work I'll schedule the MVD. I don't mind having no feelings in my lip or gum I would have preferred to have the MVD done now.The longest part now is having the procedure approvedthrough my HMO. Thanks for providing this forum.
Tom <ts0i871@capital.net>
NY USA - Friday, April 17, 1998 at 16:44:00 (PDT)

I've had TN for 22 years(!) and for many years the docs thought it was TMJ. One doctor realized it was way too painful, and sporadic, to be TMJ; she referred me to a neurologist who diagnosed it. After 5 years on Tegretol still having breakthrough attacks, I found the TNA websites and tons of info on the net; and, as a result, had an MVD 6 months ago by Drs. Thomas Lovely & Peter Jannetta in Pittsburgh, and so far so good! My TN type was called both "glossopharyngeal neuralgia" and "geniculate neuralgia" -- both describe what I had; deep blasting ear pain, like the worst earache imaginable. Attacks would start in the early am (I think from sleeping on the TN side) and last anywhere from several hours to one horrific 3-day attack of relentless electrical jabs and jolts. I've stayed active with the TN list and hope that we will continue to make medical/surgical breakthroughs re: facial pain. Help is out there; don't give up!
Jane Uitti <juitti@sprintmail.com>
Louisville, CO USA - Friday, April 17, 1998 at 13:52:14 (PDT)

Deborah..thanks for the site. It provides more comfort than you know! I am considering having the balloon decompression procedure done and would be interested in hearing about others experiences with it. Any information would be much appreciated. Thanks!
Anne <Mastersona@aol.com>
USA - Tuesday, April 14, 1998 at 16:44:06 (PDT)

I am 37 and for the past year I have thought I was nuts when describing the pain I have been having. It starts on the right side of my face and shoots back over the right side of my scalp. How do you tell someone that when you touch your hair it feels like being hit with an electric hammer. I know they'll lock me up. This has happened to me about 6 times and is getting worse. Today I went to the doctor because of a pain in my ear that has kept me up all night and shooting pains from my right eye back. He was not surprised to look into my ear and find nothing after my description. He suggested I have a brain scan or something but started to describe exactly what has been happening to me. He suggested the possibility of TN. I just thought I would have a look on the internet and I feel much less crazy now that I can associate this incredible pain with something.
Phil LeGree <plegree@rogers.wave.ca>
North Vancouver, Canada - Friday, April 10, 1998 at 16:45:43 (PDT)

I visit your web site often Deborah. It helps knowing your not alone. I've had tn for two and a half years now, it seemed to start after dental work(root canal). Thank God I've been feeling better the last few months. I take Tegretol and it must help. During stressful times I can feel it creeping up on me and I try relaxation tecniques, make sure I get plenty of sleep and it seems to keep this monster away. I haven't figured out yet if tn causes depression or if depression causes tn to become worse. Keep up the great web site!
Cheryl <cspeed@norwich.net>
n.y. USA - Wednesday, April 08, 1998 at 12:57:45 (PDT)

My initial problems with trigeminal neuralgia began in 1985 but I had several long periods of remission until 1992. The neurologist that I began seeing in 1994 had me increasing my doses of drugs until I was taking 1000 mg/day of Tegratol and 80 mg/day of Baclofen, as still the pain would break through. Although I talked to her several times about surgical procedures, she only gave me horror stories about total facial numbness and "anesthesia dolorosa". Finally by GP had me consult with a neurosurgeon and ultimately he did a microvasular decompression in July 1996. I wish that I could say it was a success, but the pain returned after less than 6 weeks. I was able to keep the pain in check with "only" 600 mg/day of Tegratol. Now, a year a half later the pain has continued to build as has my drug dosage. Later this month, I'm scheduled for a stereotactic radiosurery (read gamma knife).
Mark Lenarz <malenarz@northernnet.com>
Grand Rapids, MN USA - Tuesday, April 07, 1998 at 20:06:11 (PDT)

Thank you for your website. I was diaagnosed with TN in February after five months of testing that ruled out the "bad" diseases (lung cancer, TB, pneumonia, throat cancer, MS,..). After learning what I had, I immediately came home to search the net! I found your site, and others, and left a message somewhere (I know because I recently heard from someone with similar symptoms). My symptoms were constant, although not severe. This past week, I have had more pain than ever. The weather has been quite cold and wet and I am thinking that it may have some affect on the symptoms. Has anyone thought that weather has any affect negatively?
Margot Fulmer <mfulmer@jps.net>
Auburn, CA USA - Friday, April 03, 1998 at 21:11:23 (PST)

I ran across this web page and cannot believe all the people who have suffered from t.n. as I did back in 1989. Actually, mine started with the worst "toothache" I'd ever had, back in 1986. For three years the toothache would come and go, each time sending me to the dentist, with no relief. I had the usual root canals, refilled teeth, nerve blocks, and I really think my dentist thought I was a nut case after awhile. Although finally he mentioned that maybe I had tic douloureaux. I had never heard of it and after I read about it decided I definitely didn't want it. But the pain episodes were more frequent, more intense and I finally went to my doctor. I reacted to Tegretol and didn't like Dilantin. With both meds I had breakthrough pain. By chance coincidental contact with a woman in my little town, I found out she, too, had t.n. but had the MVD surgery to correct it. (Janetta procedure). I got the name of her neurosurgeon in St. Louis. After a preliminary visit the surgery was set up in Oct 1989. I have been completely pain free since that time. I highly recommend this procedure...find a qualified, experienced neurosurgeon. I am so thankful that I had the procedure. It saved my life. By the time I went for my first office visit with the neurosurgeon I was suicidal. And my family was probably secretly homicidal although they were very patient with me. It was just the darkest period of my life.
Benita Coffman <benidew@midusa.net>
Ks USA - Tuesday, March 24, 1998 at 17:04:16 (PST)

I am a 33 year old female who has been diagnosed with atypical facial pain and/or Trigeminal Neuralgia. It started about 3 years ago with a toothache. I work for a dentist as a dental hygienist, he took a look and couldn't find anything wrong. Replacing fillings didn't help, root canals didn't help, apicoectomies didn't help, and as a last resort extractions didn't help. It was suggested that if I needed extra attention to go see a therapist, as there was nothing wrong. My friend saved my life when she found an article on ''Atypical Odontalgia.'' It described my symptoms exactly. I went to see a dentist who deals with TMJ and other facial and head pain and within two weeks my diagnosis was confirmed. He put me on Elavil and withina month my symptoms and pain was mostly gone. I remained on Elavil and was in remission for about six months. I had another toothache and the x-ray showed an abcess around a root canal tooth. This time we could actually see what the problem was and that this one wasn't ''all in my head.'' An apicoectomy was done, but the pain got worse. Two weeks later the tooth was extracted because of the unbearable pain, even though the surgical site looked as though it had healed well. The Elavil wasn't helping, so I was switched to Neurotin. No relief. The only relief I could get was then my boss would give me an injection of local anesthetic, but that only lasted a couple of hours until I got another one. Ultram seemed to take the edge off the pain, but it was still constantly present. I was refered to a neuroligist in December, and we are trying different medications seeking relief. I got toxic on Tegretol and spent four days in the hospital. The pain I have is a near constant toothache. It is always there, sometimes just slight annoying pain and other times the pain is overwelming to the point I have seriously considered suicide. The only time it doesn't bother me is when I sleep, so I use sleep as an excape from the pain. Stress and fatigue seem to aggrivate my symptoms, so I practice my relaxation excersises and take a lot of naps. I have been seeing a therapist to help me deal with the grief and anger with my loss of living a normal life. I cannot work due to the pain and the depresson it has caused. I have resumed taking Elavil and after one week my symptoms are nearly gone, and I am trying again to live a normal life. Yesterday while shopping the pain came back full force and I emotionally lost it and fell apart in public. The pain subsided in a couple of hours, but again thought of suicide to escape passed through my mind. My husband has been very supportive and understanding. It is especially destressing to have a disease or condition which has no outward tell tale symptoms. The best that I can hope for is to stay in remission, although this monster will always be lurking in the shadows waiting to attack, with no idea what provokes it or stops it. Surgery may be an option, but my case is bilateral and therefor more difficult. I know this has been a long story, but venting helps and knowing that I am not alone with this helps. If anyone would like to contact me I may be reached at dash@netnitco.net. Will try to respond to all.
Julieann Dudash <dash@netnitco.net>
Hebron, IN USA - Monday, March 23, 1998 at 13:01:56 (PST)

My mother-in-law suffer from TN and has for 15 years. She has started having spasms which has made it 10X worse. We are looking for specialist in the Dallas,Houston, Denver or Oklahoma City area that can help us and give us some options with surgery. Any help would be greatly appreciated. Thank You. Verna Goodin
Verna Goodin <verna@tcfa.org>
Amarillo, TX USA - Wednesday, March 18, 1998 at 12:11:00 (PST)

Hello Debroah - thank you for putting your URL link up on the TN online message list. I am going to explore your site now, and very much appreciate your sharing the link. Best of days to you, :) LDMF.
Dr. L.D. Misek-Falkoff <include@worldnet.att.net>
Pleasantville, NY USA - Monday, March 16, 1998 at 13:36:53 (PST)

I have had a long and painful struggle with TN. At the age of thirty, I have already spent 12 years fighting the pain which has been absolutely debilitating at times. I've tried most everything. Tegretol is the only drug that provides relief, but that only for a limited time. The dosages creep up and up over time until I can't function. I've had four glycerol rhyzotomies, all of which succeeded, but never lasted for more than 1 or 2 years. One of these left my eye, forehead, and part of my cheek permanently numb. I flew down to Pittsburgh to have Jannetta perform and MVD, hoping for the best. But the pain came back in nine months. Most recently I've had a RFL that also worked but lasted less then two years.

Anybody else had such miserable luck with both operations and drugs? What other options have you tried? I've heard of a procedure called the Gamma Knife. Does anyone know of anybody in the Boston area that performs this procedure? I'm currently up to 600 mg Tegretol and don't expect that I have much more time to consider options. Thanks.
Mike Poole <mike@servicesoft.com>
Natick, MA USA - Monday, March 16, 1998 at 13:22:11 (PST)

I HAVE SUFFERED WITH FACE PAIN SINCE APRIL 97. IT STARTEDWITH MY EYE WATERING. SINCE I WEAR CONTACTS, MY OPTOMETRISTTOLD ME I HAD DRY EYES. HAVING NO RELIEF I WENT TO AN EYEDR. AFTER 4 VISITS HE TOLD ME THAT HE COULD NOT HELP MEANY MORE AND THAT I SHOULD GO TO A ALLERGIST. THE ALLERGISTPUT ME ON A SHOEBOX FULL OF DRUGS THAT MADE MY PAIN 10XWORSE. AFTER 3 DAYS OF HORRIBLE PAIN I WENT TO AN ENT WHOTHOUGHT IT MUST BE A DENTAL PROBLEM TO GIVE ME SUCH DEBILITATING PAIN. AFTER A ROOT CANAL MY PAIN CAME BACK. THEN I HADORAL SURGERY, THE PAIN STILL CAME BACK. WITH NO RELIEF, IDECIDED TO HAVE MY TOOTH PULLED. FINALLY I WENT TO A NEUROLGIST WHO TOLD ME I HADTN. I AM NOW ON 1200 MG OF TERGRETOL AND 25 MG OF ELAVIL.MY PAIN HAS BEEN GREATLY REDUCED BUT I STILL CAN'T WEAR MYCONTACTS. SINCE MY PAIN HAS ALWAYS BEEN CONSTANT IT IS MYBELIEF THAT I HAVE ATYPICAL TN. I AM A 43 YEAR OLD WOMAN ANDWOULD LOVE TO HEAR FROM ANYONE THAT HAS ATYPICAL PAIN THATRADIATES UP INTO THE EYE AREA. EVEN THOUGH I HAVE RELIEF, IDON'T LIKE THE FACT THAT I AM ON SO MUCH MEDICATION. I WOULDALSO LIKE TO KNOW IF THERE ARE SOME SURGERIES THAT ARE MORESUCCESSFUL WITH MY TYPE OF TN THAN OTHERS.
MARY KATE COSTA <IRISHP@pacbell.net>
FRESNO, CA USA - Friday, March 13, 1998 at 21:15:40 (PST)

Hi, Deborah, I have heard that I ws already, "in", but the e mail was incorrect. Someone submitted my address and it was a miss-type apparently. Not sure how this happened, or who did this. That's okay, though, it's fixed now. One small problen, though, I'm going to have to go to Seattle for brain surgery pretty quick, possibly this week, (not t n related), and will have to drop out and then come back with a new e mail address as this server is Spokane local only. I will let everyone know as soon as possible. And, to anyone who has tried to reach me, I am sorry as the dickens but didn't know until someone clued me that I was listed wrong. Thanks and a big hug to anyone who can use one right now. Donna
Donna Hollingsworth <hdholling@nextdim.com>
Spokane, Wa. USA - Monday, March 09, 1998 at 15:29:47 (PST)

Dear Deborah, I cannot say enough about your TN/Facial Pain Web Site..Thank God for folks like you helping others with this "horrid" affliction.. May all good things come to you and your family and may you be "blessed" with pain free days...MaryR.
M.R. Whitney
Houston, Tx. USA - Monday, March 09, 1998 at 11:47:01 (PST)

I don't know what to say here. I have Trigeminal Neuralgia now since 1992. I have no idea why I have it. I hate it. I take Tegretol (300 mg a day) and hate that too. Since I hate the drug I am thinking of having my general practitioner refer me to a neurologist and of course I am nervous about what he can or will do to help me. I am 60 years old and in good health except for TN. I can't see myself putting up with this for years to come. Thanks for any good ideas. Carol
Carol Miller <carol@color-country.net>
Panguitch, UT USA - Saturday, March 07, 1998 at 14:20:42 (PST)

After over 100 doctors and pain since July 24, 1989, I am a 36 year-old woman who needs relief from constant chronic facial pain. I have had brain surgery (microvascular nerve decompression) and two facial surgeries and several other procedures. If you can help treat this terrible pain, I would be enternally grateful.
Leslee Palmer <none>
Oxford, MS USA - Thursday, March 05, 1998 at 16:45:26 (PST)

Is there are correlation between stress and TN? When my symotomsgot worse, my doctor told me that it was due to stress. Are there any studies on this?
Chellis <yingc@kenyon.edu>
OH USA - Wednesday, March 04, 1998 at 14:33:45 (PST)

Congratulations on developing a very fine web page!
Steven M. Croft,M.D. <smcroft@hal-pc.org>
Houston, Tx USA - Tuesday, March 03, 1998 at 08:27:35 (PST)

I have a TN since 2 years ago. The pain is excruciating. It is affecting the lower right side of my face. I am relying completely on the wisdom of my doctor and most of all our God in giving me the much needed relief. How I wish I could talk to anybody with very similar case who found a solution. Here in my country, at least there are so many things to do that prevents me fromletting the TN eat me slowly into toital depression. The people around are so wonderful
Wilbur G. Dee <wilbur@pworld.net.ph>
Philippines - Sunday, March 01, 1998 at 16:37:25 (PST)

Update and change of e-mail address.
JoAnn Reardon <reardonp@ix.netcom.com>
Piedmont, SC USA - Sunday, March 01, 1998 at 16:21:51 (PST)

MY 81 YR OLD MOTHER HAS SUFFERED WITH TN ABOUT 10 YRS NOW AND IT BRINGS BOTH OF US GREAT PAIN. I HATE TO SEE HER SUFFER SO. AND AT HER AGE, IT IS NOW AFFECTING HER OVERALL HEALTH EVEN WHEN THE 'SPELLS' ARE IN REMISSION. SHE HAS BEEN TO 2 NEUROLOGISTS AND I DON'T THINK THEY HAVE A CLUE. SHE HAS TAKEN TEGRATOL & THE LATEST TRY, NEURONTIN WITH NO SUCCESS. SHE CLAIMS HER BEST RELIEF (AND IT'S NOT COMPLETE) COMES WITH ANACIN! I WOULD LOVE TO HEAR FROM ANYONE WHO HAS HAD THE SURGERY. WHAT'S INVOLVED, WHAT THE SUCCESS RATIO IS, ETC. THIS HAS BEEN A VERY INFORMTIVE PAGE AND I THANK YOU!
JOANN REARDON <reardonp@ix.net.com>
GREENVILLE, SC USA - Saturday, February 28, 1998 at 04:33:52 (PST)

Many thanks for your web site. I too have just been diagnosed with this incapacitating medical condition and it is great to read the very fact that sadly I am "not alone". I have several questions about the condition if someone would like to email me.1. Does this condition ever completely resolve where you are asymptomatic.2. Does this condition over a period of months or years keep getting worse or when you have it, that is the worst it gets.3. What mental gymnatstics can I do to help when the pain strikes.4. Is it comon for it to become bilateral (as currently it is only one side (Left) and I don't know how I would cope if it was both!5. Has anyone found that diet or diet supplements help.Many thanks for your assistants
Pete Jackson <Pacifichideaway@xtra.co.nz>
Opotiki, New Zealand - Wednesday, February 25, 1998 at 12:40:13 (PST)

I was diagnosed trigeminal neuralgia several years ago. I had surgery two years ago and it worked for a few months, but then the same symptoms re-occurred. Now considering the procedure that deadens the nerve, but am afraid I will end up losing my sight in my left eye. Thanks for your Web Site and the opportunity to share.
Roger Tanner <Ro-AnTanner@worldnet.att.net>
Asheville, NC USA - Monday, February 23, 1998 at 12:01:17 (PST)

Just diagnosed with Trigeminal Neuralgia - what a horrible feeling of helplessness, but love your site.
Kim Maly <MrsK518@aol.com>
CA USA - Monday, February 23, 1998 at 08:35:09 (PST)

I have just found that I have TN and it is very difficult for me.I teach middle school and I am very active person at school and in my community. I am afraid of the changes etc. I may need to make. I have read about TN and talked with the the doctors a bit.I am trying to find the right amount of tegetolto take. I hope to return to school very soon. I miss the kids. My first severe attack happened while I was teaching. Itscared me and the class of 8th graders I was teaching. I amnot sure how I should explain what has happened to me, but I know that the students need to understand this condition. If you haveany advise. I would very much appreciate your input. Thankyou. Ruth Anne Eubanks
Ruth Anne Eubanks <reubanks@swbell.net>
Independence, MO USA - Friday, February 20, 1998 at 06:05:30 (PST)

Am married 46-yr old female with TN. After many months ofcostly dental procedures it was finally determined that theproblem was "not of dental origin". I'm now on Tegretol, and Damson-P for the breakthru pain. Will be seeing neurologistnext Monday as my internist is now at a loss and the pain(when it is present) does not respond to much of anything.Strangely, I sleep well enough most nights. Perhaps I shouldstay in bed all day (tsk...tsk).
Kris Boomer <boomer@theworks.com>
Visalia, CA USA - Tuesday, February 17, 1998 at 17:50:05 (PST)

I am researching the relationship between on the job stress and the onset of TN symptoms. I would appreciate any information, anecdotal, clinical, etc. that links high stress, often "teeth clinching" stress with either the onset of TN or TN's recurring symptoms. Many thanks, Dan Krieger, Ph.D.Professor and Chair of University Grants and AwardsCAL POLY State UniversitySan Luis Obispo, CA 93407dkrieger@calpoly.edu
Dan Krieger <dkrieger@calpoly.edu>
San Luis Obispo, CA USA - Wednesday, February 11, 1998 at 12:49:30 (PST)

Thank you for creating this site. I have been suffering from TMJ since 1993 on my left side. I have been to a dentist, orthodontics, neurosurgeon for a year taking tegretol and other pain reliver which gave me no help. I noticed in the Long Beach paper one day that a Dr. Copland, neurosurgeon, at the Scripps Institue in San Diego was able to relieve the pain through a method called glycerol injection. Finally in 1994 I had this surgery done and was pain free for two years. I went back in 1996 for another injecting and now in 1998 did my third injection. Although this method is only temporary I least I am pain free for awhile. I hope and pray that someone will find a cure for this terrible pain.
June Smythe <jwsmythe@ix.netcom.com>
Gardena, CA USA - Friday, February 06, 1998 at 09:45:09 (PST)

As a sufferer intermentantly for over 25 years (I'm male, 46), I have great sympathy and understanding for those who've commented. The battle goes on for me. My episodes started at 19, but it wasn't till 22 that I was diagnosed. Off and on Dilantin and Tegretol until 1980,when the Microvascular decompression (the Janetta procedure)was performed. Ten years of relief. Eight years ago it returned. Not with the fury before but still bad. Mixtureof Tegretol and Neurontin helps control it and I have my good and bad days. The kind of pain is indescribable...only those who have it know. Thanks for the chance to communicate these thoughts. This can be a very lonely affliction at times and there's truth in the adage "miseryloves company".
Curtis Carroll <curtiscarroll@compuserve.com>
W. Sacramento, CA USA - Thursday, February 05, 1998 at 13:06:56 (PST)

This is a great site. I have already emailed some people .I have had 3 radio frequency operations and welcome anybody to email me . Doctors just don't understand this condition so maybe we can help each other.
Jim Fowler <fowler@durham.net>
Oshawa, Ont Canada - Thursday, February 05, 1998 at 08:28:53 (PST)

I am a 40 year old mother of 3 who has been dealing with Trigeminal Neuralgia for the past 15 years - 3 of which were pain-free following a MVD - and am following every and any path I can find - emotional, spiritual and of course medical - to try and get a road-map for this difficult and all-encompassing condition. My latest try is cranial-sacro therapy. Has anyone tried it? I felt quite positive after my first session, and the therapist has worked with other TGN sufferers before, some with success. She found a great difference between the right side of my body (the TGN side) and my left, all the way down to my feet. Has to count for something! Best of luck and all my support to all current and past holders of this condition.
Susan Drury <susan@netwave.ca>
Toronto, Canada - Wednesday, February 04, 1998 at 14:11:02 (PST)

My best friends mother (age 87) was just diagnosed with TN. I was trying to find some info on it for her. Thanks from my friends mother. Your page has been very helpful.
Joan Lange <lange@kids.wustl.edu>
St. Louis, Mo USA - Wednesday, February 04, 1998 at 11:12:48 (PST)

HiMy name is henny I am 48 years old I was diagnosed with M.S.back in '79 mainly eye sight problems I then went into re-mission for 10-12 years.Unfortunatly it came back with a vengence in '91 effectingboth legs and left wrist, then in '95 TN commenced slowlyand dull at first then progressed over the next 8-9 monthsto the electric shock type jolts,I have had various med's(teg, dil)etc. it controls the pain to some extent but also numbs the brain in my case. I am considering RADIO FREQUENCY LESIONING (RFL]Has anyone had this procedure or know of anybody that has,any comment welcome.KIND REGARDSTHANK YOU FOR THE VERY IMFORMATIVE SITEhenny.B.
Henny Blakeney <sandh@alphalink.com.au>
MELBOURNE, AUSTRALIA - Tuesday, February 03, 1998 at 20:37:43 (PST)

Thank G-d for the internet! My father is in the hospital for 3 day now from TN medication overdose? So the docs think? Your comments have helped!
Ben Gula
WA, USA - Tuesday, February 03, 1998 at 10:47:11 (PST)

My best friend has just been diagnosed with T.N. and it is terrible. We are learning more from this thing on the internet than with the doctors. All this to say that we do not feel very supported by the doctors.I think we need to learn more about this and then tell our doctors. I think it's terrible. Thanks to your site and all your work I feel we will go through this with more ease. Thanks a million.
Angelina
Montreal, Canada - Monday, February 02, 1998 at 06:59:54 (PST)

This is a great site Deborah, you are one strong lady - keep up the good work.Lezlie
Lezlie Wilson <lw@adss.on.ca>
Sault Ste. Marie,, ON Canada - Friday, January 30, 1998 at 20:54:02 (PST)

I was diagnosed with TN July 1993 and have sufferedon and off up to now. Seems thatI am not the only one out there with the same condition. Tegretol seems to work but Iam concerned about its continued use over the long term. I would like to hear fromanyone who could direct me to the right source for alternate treatment. Or at least be able to relate similar conditions. Nothing like this WEB site in our region and even though the doctors areempathetic to the condition I don't get much help from them exceptthe "tegretol" which works at present.Thank you in advance for any helpAllan DBIVAN@BC.SYMPATICO.CA
Allan Newsome <dbivan@bc.sympatico.ca>
Richmond, BC Canada - Friday, January 30, 1998 at 13:44:34 (PST)

I am 19 yrs old and have just been diagnosed with TN yester-day. I am taking Carbamazepine and already I am having greatrelief. It sucks having this!!!
B. Jana Hotchkiss <hotchkis@cds.net>
Grants Pass, Or USA - Thursday, January 29, 1998 at 10:08:51 (PST)

I have suffered with facial neuralgia for almost ten years-the result of dental infection. There has been no drug oralternative form of treatment that gives lasting relief. Iam thankful for the opportunity to learn from others and hope-fully, we will eventually find effective, permanent treat-ment.C.Cowan
Corinne Cowan <dacowan@telusplanet.com>
GrandePrairie, Ab Canada - Tuesday, January 27, 1998 at 19:08:04 (PST)

Was diagnosed with left sided TN on Thanksgiving Day 1994 at age 27. I am now 32. I've had 1 nose surgery, 2 MVD's and 1 sub-occipital craneotomy C1 laminectomy to correct an Arnold Chiari type I brain malformation. Have bilateral pain as a result of birth defect. Still healing from surgeries. Still require Tegretol, Neuronton, and Elavil to manage pain. Also rely on alternative medicine to compliment my care. I exercise, practice Qi Gong, eat a special diet, and incorporate stress reduction, meditation and guided imagery into my daily routine. I haven't been able to work. I'm on disability. I recently have been able to return to school. I'm in graduate school to become a family therapist. Currently I'm doing my internship facilitating groups at a health crisis resource center. I'm also the MN TN support group leader. I experience double vision as a drug side effect and damage to 4th optical nerve from surgery.
Connie M. Carlson <conniec@bitstream.net>
Minneapolis, MN USA - Monday, January 26, 1998 at 20:30:55 (PST)

GLAD TO SEE YOU, WILL CONTINUE LATER.
DONNA HOLLINGSWORTH <DHHOLLING@NEXTDIM.COM>
SPOKANE, WA, WA USA - Wednesday, January 21, 1998 at 17:41:42 (PST)

Suffered for five years with TN, goes a way for a while, then comesback. Use only Tegretol for relief, working for now but would like to persue alternate treatment but unsure as to how to go about it. Doctorshere appear to be disinterested in TN. No cure they say, live with it.Great Web PageAllan
A Newsome <DBIVAN@BC.sympatico.ca>
Ricmond B.C., Canada - Wednesday, January 21, 1998 at 15:44:17 (PST)

I have had TN for 23 yrs. Went to too many Drs. to count before getting a diagnosis. I have had surgery, had 3 teeth pulled, taken Dilantin, Caffergot, & numerous pain meds. About 10 yrs ago tried Tegretol & dosage was too high & it made me crazy!( As if I didn't already feel that way because of this illness!) Then when it came back @ yrs ago my PA wanted to try Tegretol again & it worked with taking it 3 x's a day. Woke up this morning with that stabbing pain again! Lord help me, I have been suicidal a few yrs back because it was soooo bad. I pray the Tegretol works again this time! will answer any email about this. It started for me when I was 19 yrs old & am now41.
Cathy Copley <copley@accessus.net>
IL. USA - Wednesday, January 21, 1998 at 03:53:02 (PST)

Hi,I am Denise and have had ATN for at least 15 years. Diagnosed after falling down on my face while roller skating. I takeelavil for the constant pain and am doing fairly well or at least I am able to function. I am married and have three boythat are mine and two boy and a girl by marriage. Kids are 20 year up to 24 now and all doing well. I am in Taiwan becauseMy husband is working here. Feel free to write me as I enjoy meeting people and wirting to them by Email. Denise
Denise <richco@top2.ficnet.net.tw>
Tiawan, - Sunday, January 18, 1998 at 15:45:52 (PST)

Diagnosed with TN at the end of May 1997. Been on neurontin since July 1997 and it seems to keep the horrible pain away so far. Do not wish for that pain to return ever. In October 1997 I got an abcess right in the area of my worst pain. Root canal was next procedure....what a miserable experience. I took more time off from work from it then I did originally when TN started. Root canal finished and now have to crown it. I have pain when I brush across the left check....annoying, but not bad pain. I have stress in life....I am divorced a bit over four years now and would much rather be married and my job is dispatching law enforcement. I would change jobs in a heart beat if I could find a job that paid as well as dispatching. Have a crazy schedule too. Would be happy to respond to any email. Take care. God does love us!!!KATHY
kathy starr <starrwy@aol.com>
Cheyenne, wy USA - Saturday, January 17, 1998 at 20:36:52 (PST)

Testing Guestbook
Michael
USA - Thursday, January 15, 1998 at 11:24:02 (PST)

• Back to My Home Page
  Add to Guestbook