"You're not alone!" 1999 Guestbook

My Sister-in-law just started showing symptoms of TN about 2-3 weeks ago. Since a couple of days before Christmas she has slept just a couple of hours at a time due to the pain. The doctor has diagnosed it as TN and has recommended surgery, with the possibility of poralysis. He has also indicated this could be the beginnings of multiple scherosis. Non of the pain medications seem to be doing much except building up her tolerance to them. I would love to hear from knowledgeable people on the subject, as she is scared an information is comforting. Thank you!
Bob Crowther <CRPEDYM@aol.com>
USA - Tuesday, December 28, 1999 at 10:12:12 (PST)

HI my name is Jean and I would really like to know if there are any effective treatments that can make you pain free from Trigeminal Neuralgia I do not have a very severe condition, I am 42 years old and believe it happened after I had a root canal procedure. I only have it in the left side of my face,Thank- You
Jean Perri <Jean@ouixnet.net>
USA - Sunday, December 26, 1999 at 16:41:23 (PST)

dear sir,i am suffering from pain on my tongue,idid went to many spesialist they did'nt do any thing at all,y just give pills and said try this it may work i went to see neorologist after halph an hour he told me that in your head i was mad like hell many dr. if they dont know the symptom ewill tell that in your head,tyey did bibcy on my tongue the result was you have no cancer but mild inflemation,i said give me something he injuct me with cortizon last for few hour,after the problem start all over,i am telling you i went and so many dr,not funny now somebody gave me paxil, beside yhe paxil iam takeing ativan 2mg.twice adayand ihave this problem comes and goes for about 30 years years to have dry mocse i use to panik,now burning on the tip of my tongue give me headace, if possible to recomend to something iiiiiiiiand i wll ask so called dr.and i thank you deep from my heart. karl seferian
KARL SEFERIAN <karl.takovideotrone.ca>
montreal, qc USA canada - Sunday, December 26, 1999 at 04:51:29 (PST)

I want to wish all of you a very merry Christmas. I had the MVD surgery on the 15 of December 1999...just 10 days ago! I feel terrific!!! It's hard for me to control my excitement. After suffering from TN for 7 years I didn't truly believe I'd ever be pain free again. I surprised my surgeon by having both an artery and a vein on the nerve. He had not seen that before. Once again, thank you Deb for having this page for people like us. If it hadn't been for you and the information you supplied I would not be feeling this great today and looking forward to the years to come with great joy.
Mary Sitton <comatose_sitton@yahoo.com>
Townsend, Mt USA - Saturday, December 25, 1999 at 08:15:56 (PST)

Would love to talk to anyone who has has MVD surgery, please email me or contact me via icq 12800604
Audrey <leggggggs@lnett.com>
Ely, nv USA - Thursday, December 23, 1999 at 20:27:31 (PST)

I have had trigeminal neuralgia for the last l4 to l5 years and have a surgical procedure to where my nerves on the entire right side of my face had been burnt. I had to have the procedure done six times. I was told I had a very acute case of TN. Tegretol worked the best for me but the worst part of that was that it destroyed my white blood cells and I caught phnemonia over and over so that ended that. In 1987 and 1988 after my sixth surgery I was without pain for many years. My vision in my right improved greatly - - no-one could tell me why. A couple of years ago my pain has started to comeback, especially in my eyes and my ears. Every once in a while I will have facial pain. Two years ago I got a touch of pnemonia and my primary care physician prescribed ZITHROMAX. It worked real well for the cure and kept my TN pain gone for about six months. I have used zithromax on several occasions and it seems to help real well. I also had an MRI two years ago and my neurosurgeon explained to me that my 5th 8th and 12th were so bad that the only choice I had if the pain came back constantly was to have my nerves burnt again. I decided to suffer since the procedure is so painful. I did try baclofen for a while but it did not help very much. I would love to hear from someone or everyone on any new ideas or news of medical break thru of whatever. Would love to hear from someone in my city of state and any to TN groups. weinhorn@gateway.net
Walter M. Einhorn <weinhorn@gateway.net>
Albuquerque, NM USA - Saturday, December 18, 1999 at 18:41:09 (PST)

although i do not suffer from your pain my best friend does im searching for help for her.she is on numours drugs for variying things ie: the teeth thing etc . she stays away from triggers as in chocolate caffine etc i never new what a real migrane was until i found her under her bed affraid of light sound and puking! She has been to neurologist,had mri,blood tests,teeth checked(does have problems ie. root canals etc) i have never seen this before she is on antidepresents and neutortin,depokit,celexa,verapamil,premeren,are they over medicating her the only thing that stops it is a trip to er they give her demeroll and send her home (maybe with vicoden) this is insane how can i help her. Her doc wont give her narc.s i dont want her on them she has tried electric shock treatment. home thearpy with herbs. the only way i have seen to make them stop is with narcotics i dont want her to do them but it is what works does any one have alternative methods? please help my friend i dont know what to do for her she is a mother of 3 and takes care of my child for me while i work. this is the first time i have ever seen anyone with the same symptms this is amazing that she has i had no idea that it even had a name i dont want my friend well she is family i love her and i want to help her she has a child with ada so she is pushed to the limit daily please anyone give advice recommend doc. treatment. thearapy.anything thanks for your time and the space babbs
barbra <bhart92435@aol.com>
seattle, wa USA - Friday, December 17, 1999 at 01:54:40 (PST)

I can relate to the extent of the pain. I also struggle with the side-effects of the medications. It feels like I can't win no matter what I do. I can't believe there is no cure for this!!!!
Deirdre <hemsing@compusmart.ab.ca>
Canada - Wednesday, December 15, 1999 at 16:34:05 (PST)

i was just diagnosed with tn please someone email me the pain is the most terrible thing i,ve ever experianced i need to talk to someone PLEASE
bobby <hairman@midwest.net>
il USA - Monday, December 13, 1999 at 18:44:50 (PST)

i was just diagnosed with tn it is the most horrible pain i,ve ever been through please someone email me i need to talk to someone going through the same thing as me.
bobby martin <hairman@midwest.net>
cairo, il USA - Monday, December 13, 1999 at 18:42:05 (PST)

Still miserable after two years and lots of medication!
Peggy Fink <Peg8212@aol.com>
Seaford, NY USA - Saturday, December 11, 1999 at 19:25:53 (PST)

I have had GN for over 10 years and TN for over 3 years. I have tried many medications, inavasive procedures, homeopathic herbs, etc., and I've had 4 brain operations. Three in 1992, one in 1997 -Neucleus Chaldalis Neucleotomy with C1, C2 Laminectomy. My medical condition has not become dormant nor ever completely stable. If you need someone to talk to that has a lot of experience with GN and TN, I'd be happy to listen or help in way.
Maureen <mah99@mediaone.net>
NH USA - Thursday, December 09, 1999 at 22:17:57 (PST)

I am taking Darvocet N100 after spine surgery to reduce pain in my lower back, legs, knees, ankles and feet with not positive results only excess of weakness and I fall asleep for 10 or more hours. I ignore if this pills contain Morphine or similar ??? If someone can help me plese I am open to hear from you Prisciliano G Barragan Male-62 Years - Edinburg, Texas 78539
PRISCILIANO G BARRAGAN <prigbar@acnet.net>
Edinburg, TX USA - Thursday, December 09, 1999 at 18:20:24 (PST)

I have TMJ and I would love to talk to someone with this same problem. thanks
Renee <ajrj@penn.com>
USA - Thursday, December 09, 1999 at 15:59:41 (PST)

does anyone have any info on atypical trigeminal neuralgia? I have that and the typical type. I've been on all the meds. I'm now on Neurontin & Baclofen. It helps some but less & less all the time. I've had it for 2 yrs. now. Any help is appreciated. Thanks in advance. Dee
Dee <budanddd>
denver, co. USA - Monday, December 06, 1999 at 16:39:14 (PST)

I'm sure some of you visiting here have had MVD. I too had this procedure done for GPN. I'm wondering if those of you that have had surgery would let me know how long the recouperation time was. I'm still very tired, with scar pain, I've lost 12 lbs., and not exactly doing the "dance" I'd love to be performing. It has been 8 weeks since the 7 hour operation. My doctor says be patient, but, I'd still like to hear from those of you that have had the operation.
Sandra Bridgeman <slywise@aol.com>
Hillsdale, NJ USA - Sunday, December 05, 1999 at 20:28:06 (PST)

HI, I WAS TOLD BY MY DOCTOR THAT I HAVE T.N. 4 DAYS AGO AND PUT ON TEGRETAL. THE PAST TWO MONTHS I HAVE HAD PAIN IN MY FACE. NOT KNOWING ANYTHING ABOUT T.N. I WENT TO A DENTIST SAYING THAT I HAD PAIN AND IF HE COULDN'T FIGURE OUT WHAT IT WAS THAT I WOULD NEED TO GO TO A DOCTOR. WELL, TWO WISDOM TEETH LATER AND STILL IN THE MOST UNBEARABLE PAIN FOR MY 30 YEARS I HAVE EVER BEEN IN, I ENDED UP IN THE EMERGENCY ROOM OVER THANKSGIVING. I WAS PUT ON TEGRETAL AND AM NOW DEALING WITH DIZZINESS,ETC. BUT IT REALLY IS COMFORTING TO KNOW THAT THERE ARE PEOPLE WHO UNDERSTAND THE PAIN. THANK YOU SO MUCH FOR THIS WEB SITE.
LaCHEL McCOLLAR
STURGIS, SD USA - Sunday, December 05, 1999 at 17:31:07 (PST)

Although I have been diagnosed as having this thing they call TN, I am reminded of the other medical situations GOD has seen me through. We all can find something to be thankfull for every thing that we have encountered in the past. About a year ago, I thought I had a tooth giving me a fit. Later I found out that it wasn't a tooth but TN that was giving me this "electric shock" at random. I am now on Tegretol starting two days ago. The Bible says that Gods grace is sufficient and I believe the Bible. God has healed alot worse things than this. He will hear my prayers and I am believing in his touch soon. Connie
Connie <Double_D_Santee>
Manning, sc USA - Sunday, December 05, 1999 at 14:12:44 (PST)

This week I was diagnosed with TN, although I suspect I have had it for over 6 months. I am in no way a wimp, my first child was just shy of 12 lbs, and I had him naturally. But, I can tell you this, there is nothing that can prepare you for the horrendous pain of this disease. Never before in my life have I felt such intense pain. It is impossible to explain to someone not suffering with TN. My job requires me to be on a microphone, talking non stop. I have to find some pain managing techniques, and quickly. The medication I am on is helping a little, but not near well enough for me to keep performing my duties for any great length of time. If anyone out there can help, I would greatly appreciate it. Also, I would be very receptive to starting a support group in my area for TN sufferers (what an understatement) if there is enough interest. Please contact me at probably_not_interested@yahoo.com
Robyn Berry <probably_not_interested@yahoo.com>
Courtenay, BC Canada - Sunday, December 05, 1999 at 08:54:14 (PST)

Hi, I was working durring the Thanksgiving holiday and my tounge went numb, and it was very difficult for me to talk. Then it got better. So they took me to the hospital and said that it was eiter Bells Pasly, complex migrain, pregnancy, or mynthasia. My doctor put me on medication wich I was elegic to. Well, I have gone to the doctors and done my MRI, EGG, and cat scan, but nothing is wrong....but there is something wrong- It comes and it goes, and I feel completly helpless. Can anybody who is out there help me? Let me know what the doctor did for you? Thankyou- anika
Anika Zabokrtsky <fortzabo@cs.com>
Seattle, wa USA - Saturday, December 04, 1999 at 14:57:48 (PST)

A very interesting site, I think I learned a thing or two.I gave Peggy Glass a call and we talked a while about people with TN. I filled out the survey page.After reading some of those letters. I see there are a lot of TN people,all over the world.
William Wavak <billwav@juno.com>
Westmont, IL USA - Wednesday, December 01, 1999 at 12:10:31 (PST)

Incapasitated from working, family, and enjoyment. Pain still excrciating. Always looking for help. Three surgeries, diet change, last 30 years have been Hell on earth.
Larry Ward <Doc231@Juno.com>
IN USA - Tuesday, November 30, 1999 at 09:28:19 (PST)

HELP! I am an administrator in a middle school. this year a great new grade 6 student joined our school. She has Arnold Chiari Brain Malformation and is struggling to pay attention, be organized and be successful. I need to be in contact with anyone who has experience with kids in school. Any help would be appreciated.
John G. Acerra <jacerra@beth.k12.pa.us>
Bethlehem, PA USA - Tuesday, November 30, 1999 at 08:52:28 (PST)

I was diagnosed about 2 years ago. Put on Tegretol. Worked great until yesterday (11/28/99). Took medicine as usual, but the pain attacked anyway. Still here today, but now constant sharp ache in left temple. Used to come and go before starting medicine. I started using a new small neck pillow about a week ago. Could this have brought it on? Also had a bad cold with a persistent and deep cough. Maybe that was the cause. All I know is that I hurt. I found some Vicodin from previous illness, took 1/2 of one. That makes the pain just a bit more bearable. I guess I will have to call the Dr. if this keeps up. It sure does make life miserable. Thanks for letting me vent. Sure hope there is a cure for this soon. (short of surgery that is) Is there anyone else in the South Bend/Mishawaka or northern IN area who has this too? I'd like to talk to you or e-mail. It is so hard for anyone else to understand the pain.
Marie Manczunski <marie5432@webtv.net>
South Bend, IN USA - Monday, November 29, 1999 at 12:52:20 (PST)

My Mother has had TN for several years. She has had some relief off and on with Tegretol, and MVD surgery. In the past few weeks, she has experienced very frequent, intense attacks of pain on both sides of her face and especially in her nose. She has reached the point where she is on the maximum dose of Tegretol, is completely bedridden, and will not eat much of anything. She is taking all steps that she feels is necessary to avoid the pain, even though now nothing works. Several days ago she had another surgery (the needle and balloon procedure) to attempt to relieve the pain. She experienced another series of attacks the evening after her second surgery. My Mother has been very strong in dealing with this terrible disease, but she is wearing down. Medication and surgeries are no longer working. My question is: HAS ANYONE HAD THE TRIGEMINAL NERVE CUT? I have read much about procedures to damage the nerve to lessen the pain, but have read very little about cutting the nerve. My wife has a great uncle who has TN and had the nerve cut over twenty five years ago (Tegretol and other procedures were not available) and he is living pain free even today! My Mother's pain is so great that I'm sure she would much rather live with the side effects (permanent numbness, facial paralysis, etc.) than deal with the TN pain. I welcome any comments about actual results of "cutting the nerve" and possible side effects. Thank you and may God bless all of you!
G. Reynolds <gsssrey@juno.com>
USA - Sunday, November 28, 1999 at 09:21:31 (PST)

Hello. I, too, have been a sufferer of Atypical TN for the past 10 years now. It started when I had an abcessed tooth opened by my endodontist. The nest morning, upon rising, I couldn't see through my bleeding retinas. My head was pounding and I vomited frequently. I was rushed to the hospital and was in intensive care for days. The doctors diagnosed "sagittal sinus thrombosis", or, in other words, a venous stroke due to a blood clot which traveled to my brainstem. During this time, I began to notice the intense, burning, yet gnawing pain over my right eyebrow, cheekbone, forehead and the back of my neck. It was constant, not intermittent. I tried for years to communicate this to my doctors, and was told endlessly that there was nothing that no one could do for me. Finally, several years later, a neurologist came to the facility which I frequented and worked at as a therapist. She recommended that I take Tegretol, and Neurontin. Tegretol made me grossly fatigued, to the point in which I had difficulty driving. Neurontin helped slightly. These attacks were waxing and waning, cropping up when I had to have dental work. Oh, I dreaded the dentist. I had to have analgesics prescribed everytime I had to have dental procedures done. The pain was agonizing. Finally, I just tried to accept the pain and discomfort. When I had a significant "attack', I would try to get to the nearest emergency room for a scan or treatment. I think I was beginning to become a "pest" since no one could give me permanent relief. I was only in my mid-thirties, trying to practice, raise a family and just live. After an angiogram, the doctor reported that I had had a stroke in the midbrain. One doctor informed me that I had Multiple sclerosis; the other one said I did not. Finally, after some visual evoked potentials, and other tests, it was determined that the pons in my midbrain had lesions on it. Perhaps this is significant. Also, there is a perivascular area in the pons. Today, with my latest attack from the TN, I am looking forward to seeing a specialist soon in another state. I know that I've been told I have atypical neuralgia, but it is one of the worst "pains" I believe I have ever suffered. I, like everyone else on this board, just wants relief, long-term, and to be able to live a normal life again. Thanks for hearing the "condensed" version of my ATN story. I really need to consider more options besides medication.
Ellen (Elle) Murray <elmurray@mindspring.com>
Hoover, AL USA - Saturday, November 27, 1999 at 17:43:37 (PST)

I was diagnosed with TN in July of this year. I am 25 years old. I am currently taking 600mg of Tegretol, and 1200mg of Neurontin throughout the day. I have had very few days that have been pain free and several flare ups in this short time that have brought the dosages of these two medications to where they are. Not to mention I have noticed already how unpleasant the side effects are of these medications are. After gaining 20 lbs. since starting the medication I have taken it upon myself to start exercising on a daily basis, no matter how much it kills me. After exercising I notice that not only am I pain free for a short time, but there is absoultely no tension in that side of my face at all. I am curious if anyone has experieced success from acupunture and if so for how long?
Kelly McGovern <kmcgovern@hritl.com>
NY USA - Friday, November 26, 1999 at 11:06:25 (PST)

Hi, I am trying to help my mother who has suffered from TN for many years. She uses Tegretol and has a total of two operations to date. My question is has anyone used or heared of anyone using Magnets to get relief from the pain of TN. I would really love to hear from anyone who has any knowledge about this be it positive or negative. Thanking you in advance.
Bruce <cruikshank@acncanada.net>
Canada - Friday, November 26, 1999 at 09:34:21 (PST)

Hi, My sister Maura has had TN for quite some time and i just happened to find your page by accident.Keep up the good work. Please add me to your info list. Best Regards, Madge
Madge Kavanagh <madge.kavanagh@agtec.ie>
Dublin, Ireland - Friday, November 26, 1999 at 05:26:34 (PST)

My father-in-law with TN had shingles in September '99 and began having his TN pains in October '99. Does anyone have information that could link the shingles as a possible cause for the TN? He has been in the hospital for 6 days now for the TN and liver problems (believed to be from the Tegretol), and yesterday he broke out with the chicken pox. He is 66 years old. He is on Nuerotin now, with little success it seems. He is hoping to try surgery soon with hopes of relief from his unbearable pain. My heart goes out to all the people who are suffering from this disorder. God bless you...you are all in my prayers.
Andrea Castleberry <acastleberry23@hotmail.com>
B'ham, AL USA - Wednesday, November 17, 1999 at 11:19:40 (PST)

Thank you so much for this web page! I was diagnosed with TN in July of 1999 and went on tegretol. Couldn't stand the side effects but the pain was lessened(with occasional breakthroughs). Took myself of because of the double vision and the pain seemed to subside. Just found out I am pregnant(I'm a 30 yr.old female) and the symptoms are returning full-force. Don't know what to do or where to turn. Has anyone out there gone through a pregnancy with this pain? Please e-mail me if you have any suggestions. Also, does anyone know which neurosurgeons in ny/ct perform MVD? thanx
Leanne Rozelle <PRozelle1@aol.com>
New Milford, CT USA - Monday, November 15, 1999 at 20:23:23 (PST)

My father-in-law has recently been diagnosed with TN and has many questions. Thank you for your web page! Great information!
Andrea Castleberry
AL USA - Monday, November 15, 1999 at 10:16:59 (PST)

Im a 29 year old female with Trigeminal Neuralgia and Im looking for some hope. After a car accident in 1988, having my face eggshelled, reconstructive surgery with lots of metal in my face, migraine headaches, 16 root canals in the past 5 years, tmj, now I have this. So what now? Im hoping some miracle will happen beacuse I feel sorry for my family. They are supportive but I know they dont understand, how can they when I dont! I just feel bad beacuse I feel like theres always something wrong, and I dont want this to take over my life, and my attention, and it is. Im looking for something, anything, Hope!
Shannon <Lilseeds@aol.com>
MD USA - Saturday, November 13, 1999 at 03:36:54 (PST)

Hi. I have had TN for over a year now. I was on Tegretol, but it became ineffective and I developed a rash. My doc put me on Neurontin and I am up to 1600 mg. I seem to have both TN and Atypical TN. The meds help the classic TN jolts of electric pain but my constant residual pain around my nose and mouth continues to burn. It has even increased. I am unable to talk for even short periods of time without pain. I have had to stop work (as a Gr. 4 teacher, I talk for a living). I am interested in any alternative therapies. I have tried many things, but continue to seek help in conventional and unconventional ways. If anyone has had any success through surgeries, or any other way, in treating the constant pain of atypical TN, please e-mail me or post on this site. This is my first time here, and I am very grateful to have it. Thank you to Deb!
wendy <crawford@macn.bc.ca>
Parksville, BC Canada - Wednesday, November 10, 1999 at 15:12:29 (PST)

I have TN diagnosed in 1990, and in 1991, I had a craniotomy to cut the nerve. Since that time, I can eat, smile, talk, etc. My biggest problem is any cool air, which in the summer is really bad with all the airconditioning. I am now working from home, which is helping lots. I wear a brown knit scarf over my head and face when I go in buildings, and get so many "comments" about it not being cold, etc. Does anyone have any other suggestions for coping with the cool air? Also I am taking Tegretol but having so many problems trying to get in enough to really help. It makes my vision so blurry. If anyone has any suggestions to help me with this, I would really appreciate it. It is to good to know others with this problem. I do feel so alone. People at work, when I had to go in to work and still have to go for about four hours a month, do not understand and tell me it is not cold. That day I have to go in, I come home in severe pain for the rest of the day. Does anyone else have problem with the cool air? Thanks
Beth Frye <bethfrye@aol.com>
Memphis, TN USA - Saturday, November 06, 1999 at 22:55:51 (PST)

The other day I submitted a narrative, but I have not found that it has been added to the guest book, so.... here goes again. I have had TN for about 5 years. Spent 4 years on Tegretol, climaxing with 2400 mg. per day and still having excruciating pain. April of 98 I went to a neurosurgeon for MVD surgey. He talked my husband and me out of that and into a RF Rhizotomy. Terrible mistake. Anyone out there considering this procedure DON'T. I was NOT anesthetized for much of the procedure, which was torturous. I wanted to die. After the surgery, I was left with terrible swelling and bruising all over my face. My right eye did not tear for 2 months,and throbbed constantly My right ear canal was swollen shut for several months, and ached constantly. My face was and is numb from the middle of my mouth to my ear, along the jawline. Half my lower lip, half my tongue and teeth and gums are affected. From April to October I was in constant pain. At one point I was told I had temporary TMJ, but mostly the surgeon responded as though nothing was wrong and that I should be satisfied with the procedure. As early as Jan. 99 I experienced pain that was intermittent but managable. The beginning of Sept. brought back the TN pain full force. I finally went to a new neurologist (didn't want to return to the one who had me on 2400 mg. of Tegretol per day!) and am now on Neurontin. I have read conflicting reports of its effectiveness and problems. So far no problems, but not much relief either. It has relieved my more severe episodes, but still can't talk, eat, wash or brush teeth like a normal person. I am determined to have MVD surgery and would appreciate input and information from anyone who has already had the procedure. I know it is serious brain surgery, but I won't become a zombie again, gain weight like crazy, and have chronic pain if there is relief available, and I believe the MVD represents that relief. Anything anyone can share regarding this surgery would be welcome and appreciated greatly. God bless us all.
Gail Bragg <Gospel316@aol.com>
Tx. USA - Saturday, November 06, 1999 at 18:22:24 (PST)

I HAVE HAD TN FOR 12 YEARS AND HAVE TAKEN UP TO 1600 MG. OG TEGEROTAL AND 900 MG. OF NEURONTIN A DAY. THIS PAST JAN. I WAS STILL HAVING PAIN EVEN WITH ALL OF THE MEDICATION. I WAS REFERRED TO A TERRIFIC NEUROSURGEON WHO PERFORMED THE MICROVASCULAR DECOMPRESSION SURGERY ON ME. I HAVE HAD NO PAIN ON THE RIGHT SIDE OF MY FACE SINCE THE DAY OF SURGERY. UNFORTUNATELY I STARTED HAVING PAIN ON THE LEFT SIDE OF MY FACE BUT 600 MG. OF TEGERATOL KEEPS THE PAIN UNDER CONTROL. AT LEAST I AM NOT IN A FOG OF MEDICATION ANYMORE. SUE
Sue <misssue@ix.netcom.com>
Chicago, Il USA - Thursday, November 04, 1999 at 19:08:53 (PST)

I had a wisdom tooth that was stucked in recent molar extraction with the roots embedded in my sinus tissue maxiliar, after outpatient surgery and not able to complete procedure due to poor local anesthesia tolerance. I felt when I was being open on the bottom right side and oral surgeon had to abort procedure. as the wisdom tooth was extracted on the first intervention I then started to have severe pain more increasingly then when I first visited the oral surgeon,went home and has I started to drink liquids, all the liquids would flow out of my right nostril to top it all off I also ended up with a dry socket meaning blood cloth was wipe away after surgery leaving my bone exposed to excrutiating and trobbing pain to my ear cheek bone and sinus. I went back to the dr and he never told me that this would be a complication wrap with an extraction of a right wisdom tooth and he wanting to take them all out at age 41 when I was originally complaining of the right upper wisdom tooth. It been a month and 2 days that I have been under pain killers as percoset tylenol with codinel and during the day every two hours with 1/2 of these portions of medication so that I can subside the pain. I want to know what are the long term consequences or damages if any when your sinus maxiliar tissue has been ruptured and if a nueoralgia pain can develop due to nerve damage from the close part of the ear lobe. I have not been able to find an opinion as to the cause and effect of what was perfrom on me without my constent due the operation documents were falsified after the fact that I signed a different document and feel my signature was stolen and placed on a document that was never explained to me. Do I have to suffer the imcompetence of a so called renowed Oral maxiofacial surgeon, that has raped me from my quality of life and that he can so easily change documents a tip of his finger without no consequences? Thanks for your attention and excuse my spell check. any advise is well appreciated. I feel abused from the way I trusted a person that just happen to study a few years more then me. Please help or refer me to a meaningful person that can and will help do justice for others that may encounter this situation. This has to STOP! PR
Ivonne Medina <OCEAN1@COQUINET.COM>
USA - Tuesday, November 02, 1999 at 17:02:12 (PST)

i had to go off the neurontin ...it wasn't doing a thing ex- cept lifting my mood...back on the tegretol..3x a day..plus anti-depressant. the tegretol makes me so sleepy...i wake up in the morning as fast as possible just to take my pill! any- one who would like to e-mail me, i would be happy to write back. would love to know just how many people suffer from this as my husband says that the number is too small for any research to be done on this...he's a dr.too.don't get surgery and don't get your teeth pulled...none of that works!
beth johnstone <beth.johnstone@juno.com>
houston, tx USA - Monday, November 01, 1999 at 08:41:43 (PST)

My nightmare began in a general dentist's chair following a root canal procedure. A Texas dentist injected some "medicine" into my tooth canal and severe pain and infection immediately followed. I lost my voice, and my news anchoring job. The pain almost drove me to take my life. I was turned away from many doctors and the emergency room. Finally after seeting 25-30 specialists I was diagnosed with possible TN or more likely, atypical facial pain. A story on Prime Time Live in the early 90s told of a bunch of Texas dentists that performed the "Sargenti Method"--a seminar procedure where they injected a substance, I believe it was formaldehyde, into the canal. Years before that, though, I had already had three upper teeth on my right side root canaled, roots clipped and finally those teeth pulled. My endodontist told me when he clipped the roots he saw "a lot of granulated tissue,whatever that means. I assume horrific damage. It's been 15 years and I'm now on Neurontin and one .05 xanax a day. I just came off a 10-day attack and my face is still throbbing. The pain is right above where the problem tooth was. The other teeth didn't need to be pulled; none of them did. I also wore braces in my 30s which did little. I had four sinus surgeries, including a maxilla antrostomy, something like that, and a septaplasty (sic). Has anyone ever heard of the Sargenti Method causing this syndrome, or had dental procedures linked to their TN? Surgery is not an option for me at this time. In my case, onset was the same day as the original root canal, which, as I've said, was not a typical procedure where the root is removed. I found years ago that no dentist would implicate another in his dental brotherhood, and to this day, I have no resolution. I never saw my MRI, but in 1989 my otorhinolaryncologist told me he thought I might have had damage done to my sinus wall. Please write back if you have any information on this.
Brenda Moore <dkeeble@swbell.net>
USA - Saturday, October 30, 1999 at 19:48:39 (PDT)

It took three years to diagnose
Brenda Moore <dkeeble@swbell.net>
Oklahoma City, OK USA - Saturday, October 30, 1999 at 19:26:22 (PDT)

I am wondering if anyone is suffering from vulva dystrophy or lichen scelerosis? How are you being treated and is it helping.
Peggy Parker <laceangelmaker@mindspring.com>
Charlotte, NC USA - Thursday, October 28, 1999 at 17:34:42 (PDT)

i am looking for information on prozac and it's side affects and addictiveness. this information is for my mother in law who has been on this medication for quite some time now and recently had the dosage increased. if you can find any information on this medication please send it to me as soon as possible. thank you for your time!! seriously looking---amanda
amanda <BabyBluEyz4999>
USA - Wednesday, October 27, 1999 at 22:31:26 (PDT)

Hi All!..I've had TN-in V2 for the last 2 yrs...don't want surgery and have found no medications (so far!) do very much..we're all involved with some other support groups; but you may wan to check out actiononpain.org...a really wonderful network, dedicated to helping all pain patients get to the help they need!
Ellen Braun <eb8158@aol.com>
Bellevue, WA USA - Tuesday, October 26, 1999 at 15:46:10 (PDT)

have had geniculate neuralgia on and off for over 15 years. refuse to have surgery...nothing good seems to come of it. has anyone had any luck with accupuncture???? i used to take tegretol but now take neurontin and antidepressants...all just help to the point were i can get up and move around... would enjoy hearing from someone who tried accupuncture...thanks beth
beth johnstone <beth.johnstone@juno.com>
houston, tx USA - Tuesday, October 26, 1999 at 12:08:16 (PDT)

i was diagnosed with geniculate neuralgia about 15 years ago i was fortunate because my husband is a dr. and knew what it was from my description..he's a psychiatrist but always loved neurology. i was taking tegretol...then for a couple of years the pain stopped...it's back now...and i am taking neurontin plus an antidepressant...plus pain pills...i refuse surgery as i have never heard of good or lasting results...so what's the answer to this hell?????? i would welcome anyone who wants to communicate with me via e-mail...thanks, beth
beth johnstone <beth.johnstone@juno.com>
houston, tx USA - Tuesday, October 26, 1999 at 12:04:54 (PDT)

I was diagnozed with Hydrocephalus (normal Pressure) two years ago when I was 64. I suffer from gait imbalance, pressure on the right side of my head and short term memory. It continues to worsen. My doctor advised that a shunt in my case would be dangerous and would not help me! It is so difficult to accept that there is not a curee. Any imput
Mary Cain <irishmary2@earthlink.net>
USA - Sunday, October 17, 1999 at 13:11:12 (PDT)

Just an update. Had my MVD on Oct.4th. The 8th,9th, and 10th cranial nerves were all done. I have no more GN pain! It's been 13 years of madness solved in 7 hours of surgery! It is great to be alive. If anyone wants to go to the best doctor in the country for this miracle, let me know. I'll send you a link to Dr. Sen at Mt. Sinai Center for Cranial Base Surgery. He is the best without a doubt.
Sandra Bridgeman <slywise@aol.com>
Hillsdale, NJ USA - Saturday, October 16, 1999 at 07:03:26 (PDT)

My husband was diagnoised with Trigeminal Neuralgia two months ago. He has been on Neurontin with little effect. As of on week ago the dosage was increased and the pain seems to be slowing down. Instead of happening all day long now it is only a few times throughout the day. If meds does not work out the next step will be Gamma Knife. If anyone has had this and would like to email results we would appreciate the information. Thanks! And thank you for this web page. Louise
Louise Hatfield <tbq002@aol.com>
Clovis, CA USA - Monday, October 11, 1999 at 17:13:43 (PDT)

Newly diagnosed epileptic--searching for info.
Darrin Frazier <darrinsfrazier@hotmail.com>
San Francisco, CA USA - Monday, October 11, 1999 at 12:15:58 (PDT)

Has any one taken part in the Pain Clinic,at the National Institute of Dental Research, in Bethesda, MD. They are conducting a research project on TN and I have volunteered to help. I would like to know what I should expect.Let me know if you have taken part or plan to in the future Thanks Wanda
Wanda Khouri <khouri@zim.com>
FtLauderdale, fl USA - Thursday, October 07, 1999 at 20:21:09 (PDT)

I saw a neuro surgeon yesterday who recommended balloon compression. I am looking for individuals who have had this procedure: what have results been? if pain free, for how long? was there numbness - for how long - how severe? other side effects? Any information would help me make my decision. I have had TN for 6 years and am on fairly high doses of tegretol and neurontin and still having major pain breakthrough.
Carolyn Maynes <smaynes@cyberus.ca>
Ottawa, ON CDA - Wednesday, October 06, 1999 at 19:51:11 (PDT)

Hi Friends, Since my last post, things have gotten somewhat worse. My husband is in even more pain. He is taken approx. 1200 mg of Tegretol and two Vicodin a day. At times he also takes Relefin. The pain still comes through. He has an over all ill feeling, a "just not right" feeling going on along with the pain. He feels fogged up. Recently he has been awakened at night with a "distant roar" in his head. There is also a pulsing type sound. He says it seems like he's hearing a noise from outside his head, but then it also seems that its on the inside. When he has these kinds of sensations and sounds he seems to not feel as well overall. This is worrying me. I don't know if this has anything to do with the TEGETOL or The TN itself. Has anyone else experienced this?? Please email me if you have or know anyone else who's had this. artseaone@aol.com
Kim <artseaone@aol.com>
ca USA - Tuesday, October 05, 1999 at 10:47:19 (PDT)

In May 1999, I had the usual MRI. The Neurologist Diagnosed me havin TN. Besides the severe pain I also have severe swelling of my left side of my face and was wondering if anyone else has any other symptoms? It comes and goes but I recently had swelling twice in a week. I would like more information on TN so if anyone out there who knows anything please let me know. Thank you and Im glad I found this site its great.
Rhonda <doylet@innernet.net>
Pa. USA - Tuesday, October 05, 1999 at 07:47:11 (PDT)

I have a severve spasm every 3-6 months. I was told this is F.M. Got Tegatol, was wondering if I took dilantin if this would prevent an episode.
Carol Snow <e638@scatcat.fhsu.edu>
Hays, KS USA - Monday, October 04, 1999 at 11:30:02 (PDT)

searching for a doctor by the name of Emil Hiefeger. migrane surgery, new tecnology.
Hope Colgrove <A-Madhouse4@att.net>
Kenosha, Wisconsin USA - Monday, September 27, 1999 at 19:24:40 (PDT)

I have had this affliction for two years, I still do not know how or where it has come from. When it flares up I take neurontin for it. I have always had it on the left side of my mouth now it had moved to the right is that possible?
Connie Patterson <cpatterson@admin.ffieldjr.davis.k12.ut.us>
USA - Monday, September 27, 1999 at 18:33:35 (PDT)

I have had severe pain since December2 1997 MY life has changed .The pain started in the left side of the face I thought was a dental. December 2, 1997 I went to the dentist the pain was horrible I couldnt stand him to touch the left side of my face he numbed it and adjusted my bite 2 hours later the numbness left and the pain started but it was worse I went straight to the ER before I could get to the ER I blacked out I stayed in the hospital for 6 days test were done but they couldnt find what it was I lived on Demoral for six days every four hours Months have passed and years I have tried all kinds of medication no luck finally I found a dentist who diganosed it as Glossopharegeal neruagia with Cardiac sycompe but no neurosurgeon will agree because of the risk recently a angiogram was done I had extreme pain during the procedure they found a blockage in the left venterbral artery surgery was planned but with in two weeks MRA was done the blockage left I dont know why the blackouts have stopped by I still have severe pain in my face which is now almost numb and severe muscle spasms which requires the ER and injection of Demoral Depression has been a problem I have lost my job I can no longer do any activities and My livihood is taken from me. Because I cant find a dedicated doctor to help me they look at me as a Drug addict. I try to find answers daily I cant give up My family is suffering I wish this would end. Please help it you have any answers
shelby
ky USA - Friday, September 24, 1999 at 20:48:03 (PDT)

I wish I had found this web page months ago before I let all those "professional" doctors (dentists, endodontists, oral surgeons, facial pain specialists,etc.) torture me with injections which sent sparks up through my face and, at one time, left one side of my face paralyzed (temporarily). I have been in constant pain (at times excrutiating) since January 1999 when I decided to put a bridge in my mouth. Both teeth started to hurt immediately. So the next step was root canals. Of course, both got infected and had to be redone. I spent countless nights trying to deal with horrible pain. No pain medication worked -- probably because I had neuralgia and was on the wrong medications. I have seen almost 15 dental professionals this year and not one has diagnosed me correctly. They all had different opinions -- apicoectomy, TMJ, clenching teeth, PSYspsychological problem. The neurologist I saw last week finally diagnosed my problem as facial neuralgia and gave me Neurontin which is helping quite a bit. The pain is still there at times and I still cannot eat on either set of molars in my mouth -- I had another root canal done on the other side of my mouth which, I believe, was necessary. The pain is worse at night. I'm hoping time will heal my damaged nerves. Thanks for a great web page. I'll drop by again, hopefully, to give you a brighter update. Time for my medication. Good night!
terry smith <smithfam@goes.com>
USA - Tuesday, September 21, 1999 at 20:11:15 (PDT)

I've been suffering with severe pain, undiagnosed correctly for 13 years. I've just recently had a dye MRI to find a "curly artery" which is very deep hitting the 11th cranial nerve. This has been diagnosed as Glossopharyneal Neuralgia. I'm on my way to see Dr. Sen at Mt. Sinai Center for For Cranial Base Surgery in New York City. Has anyone seen this Doctor? I'd love to here from anyone suffering with the pain of this condition.
Sandra Bridgeman <slywise@aol.com>
Hillsdale, NJ USA - Wednesday, September 15, 1999 at 07:09:28 (PDT)

My father (age 65) was diagnosed with TN over one year ago. He has considerable pain and he feels that he has exhausted every avenue (ie. dental surgery, medication -makes him sleepy, chiropractor, massage, acupuncture). Surgery was suggested to enter the base of his brain and use a balloon-type apparatus but he is nervous about such treatment. Please write with suggestions that have worked for you. Thank you. E-mail rgott@direct.com
Ilka Johnson <rgott@idirect.com>
Toronto, Canada - Monday, September 13, 1999 at 12:37:48 (PDT)

I am 31 years old with a 3 year old son and I was diagnosed about 6 weeks ago. I believe I have been suffering from TN for a little over a year. The initial symtoms led me to believe that I had a reoccurring ear infection. I would occasionally get the sensation of fluid in my ear and a sharp stabbing pain. Periodically I started to get a sensation in my lower teeth. I thought maybe I had a bad tooth and so I did the "normal" thing of taking a few tylenols or excedrins to reduce the pain. For a while this seemed to work. I couldn't really chew on the left side of my face and there were times when inhaling through my mouth would make my knees buckle. The air on my teeth was so cold, so deeply chilling, that it ached to the very center of my being. I was lucky that none of the dentists (I went to three) pulled any of my teeth. I was told that I was probably suffering from TMJ. I went to an ENT specialist - his diagnosis was that I needed to stretch the muscle in my jaw. To accomplish this he gave me a handful of tounge-depressors and told me to start with two or three and gradually add additional sticks to passively stretch the muscle. I walked out of his office and gave the sticks to my son to play with. With the pain in my jaw I do not want to gradually add ANYTHING! My general practioner diagnosed my TN and was honest in telling me that I have a long road ahead of me. My life has changed greatly in the last 6 weeks. I can not work. I care for my son with assistance from my mother. I am almost never pain free. I have the sharp stabbing pain in the ear, dull to stabbing pain in my lower and upper teeth, aching to throbbing in my lower jaw and sharp, stabbing, intense pain on the upper left side of my head above the ear. I have a very high pain threshold and this pain I am having a very difficult time dealing with. I pray to God that the pain doesn't return and when it does, I pray that it stops. I have "flare-ups" that last for 10 minutes up to three hours. What do you do to get through the pain? I have the urge to run, but I don't want to be too far from contacts if I need assistance. I want my life back. How many of you go to work everyday? How do you work through the "flare-ups"? I'm just starting the process of finding out what works for me, please let me know what has worked for you. I look forward to hearing from some of you. It has been a mixed blessing to find this site. It is hard to hear about the pain, but it is comforting to know that I am not alone.
Katrina Williams <growgren@gte.net>
Riverside, CA USA - Tuesday, September 07, 1999 at 00:58:14 (PDT)

Hi there! I have had bouts of Trigeminal Neuralgia for more than half my life. I am 45, and have been a nurse for as long. the funny thing is I wasn't diagnosed by an MD, but by a very knowledgable Chiropractor. I have since found ways to minimize the occurances. I did not know about Tegretol until a patient of mine suffering with the same tortures "Tic de la Rouge" diagnosis shared his story of diagnosis and treatment with me. I would like to here from anyone with help on handling dental care on the effected side of my face. It's difficult to make myself think about anything metal coming near the left side of my face let alone a dentist's instruments. Thanx! Lorie Cole/llcole@jps.net
Lorie Cole <llcole@jps.net>
Lakeport, Ca USA - Thursday, September 02, 1999 at 00:12:54 (PDT)

Well it seems that I am 1 of the lucky 300 out of the 2,000,000 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. E-mails & comments to me are welcome. Barry.
Barry <TNinTN@yahoo.com>
Memphis, TN USA - Saturday, August 28, 1999 at 02:52:18 (PDT)

My husband is now in the hospital recovering from complications due to MVD. We whole heartedly believe that the initial pain in the left side of his forehead is gone for good. The complications are very rare that he is suffering and he had to undergo another surgery to repair damage as well as stay in the hospital another week with a lumbar drain in his back. While the drain was in place, he was in severe pain from the pressure of the cerebral fluid and eventually overdosed and had a "psychotic episode" from using too much demerol. He has had pain almost everyday for 2 years and we have lost our home business and more money than we can ever pay back. God has left me my husband, and I am more thankful than I can express. I often feel alone in this as I know my husband does, because we are each dealing with a different aspect of this terrible disorder. While my husband feels inadiquate at not being a functional as he used to be, I feel overwhelmed at the amount of things I have to deal with as a mother and a father to 3 very small children. My husband has been on the maximum amount of Neurontin and he also tried percocet, vicoden, morphine, amitriptilene, nortriptilene, prozac, effexor, and the best relief he had was from something called OXYCONTIN this drug is a 12 hr. percocet. I am very sorry to hear of those who cannot find MD's to listen and treatments that work. We know we are fortunate even in the hell we have faced. I have always said that if anything weird can happen to somebody, it will happen to my hubby. and he's still with us. Someday we will all be pain free. It is God's will.
Liz <jebadiahj@yahoo.com>
OR USA - Monday, August 16, 1999 at 23:02:19 (PDT)

This week after a microsurgery in my nose my doctor diagnosis a trigeminal neuralgia (left side). Next wedneday I am going to a neurologist. But in spite the neuralgia I am realy worried with this new disease. I want to know everything about this. Before the surgery I had this "strong headache" in my face and head, but my doctor at that time atributed it to my alergy and sinusite. And now I was submited to the surgery, that they said was a success and will remain suffering with this ache? Is this forever. Sorry, but if possible help me.
Lourdes de Matos <loumatos@domain.com.br>
Rio de Janeiro, RJ Brasil - Sunday, August 15, 1999 at 11:04:03 (PDT)

Dear Anonymous in Australia. You state this burning pain was in the mandible area? Was your tongue/mouth involved also? Did this "causalgia" start with dental work or an injury to your face? Thank You.
Betty
TX USA - Saturday, August 14, 1999 at 16:19:55 (PDT)

Apologies for posting my comments twice!
Anonymous
Australia - Friday, August 13, 1999 at 19:49:04 (PDT)

Three years ago I experienced a neurogenic disorder which manifested itself as a continuous burning pain. Concerned at the apparent lack of pain decrease over time, I was referred to a specialist oro-facial surgeon, who diagnosed my condition as causalgia. Invasive treatments were ruled out, as the intensity of the pain was not excruciating as in Trigeminal Neuralgia, in addition to the prospect of undesirable post-surgical complications, among them partial or complete anaesthesia of the affected area (left mandible). Therefore, a course of medication was begun. The medications I use are Doxepin and Clonazepam. I cannot praise my treating specialist highly enough. The onset of analgesia was progressive. I have been on Doxepin and Clonazepam for 3 years. Apart from minor side effects, I am virtually asymptomatic most of the time, and even when there is a temporary reccurence of pain, it is usually of a very short duration, and of low intensity. I would appreciate the signing of this guestbook by others who have used the same medications for the same condition (causalgia), or similar conditions. Please remember, there is a multitude of highly skilled medical professionals. I find it inconceivable that the majority of persons experiencing facial pain, typical or atypical, cannot be helped by a oro-facial pain specialist. Good luck to all seeking relief, and congratulations to those who have found it. Anon.
Anonymous
Australia - Friday, August 13, 1999 at 19:44:54 (PDT)

I have had TN for almost two years now. My systoms are some what different and the doctor says I some what of a mystery. First they suggested that I take Tegratol (spelling ?) but I did not want to take this drug do to some of the side affects like sudden death and platelet anemia. I am about to try Neurontin I hope it works because I feel like ripping off the left side of my face by early afternoon. If it does not work, and after what I have read on the Internet, I will push for the nerve decompression surgeory it seems to be the best option.
Diane Reed
Tucson, AZ USA - Thursday, August 12, 1999 at 18:36:49 (PDT)

Hi, Found out I had TN about 6 months ago. I am taking meds but they are not always helpful. I gain little information from doctor other than saying we'll increase or try a different med. I'm looking for other ways to fight the pain. Any suggestions?
Connie <reidel@iconnect.net>
Grayslake, IL. USA - Sunday, August 08, 1999 at 15:34:21 (PDT)

Thank you for having this page. I have had TN for 7 years and was begining to think I was the only person who had this. No one around here other than my doctor has even heard of it. It is comforting to know that others know what I'm talking about. I get so depressed, not because I have this (I've never felt sorry for myself) it's just the isolation. I am curently on Tegretol, Baclofen, Amitriptyline, and Darvocet. TN runs my life. Most of what I do depends on what it's doing at the time. Whether I go outdoors-can't do that if it's windy or cold, what I eat, whether I read stories to little children or not because sometimes it hurts too much to even talk. No one seems to understand what it's like. My family tries to but they can't understand that simple things, like a hair falling across my cheek can be very painful. I would truly love to talk to someone.
Mary Sitton <comatose_sitton@yahoo.com>
Townsend, Mt USA - Monday, July 26, 1999 at 19:09:54 (PDT)

I was diagnosed this year with TN. I am taking 1800 mg of Neurontin and finally free of the worst pain I have ever felt in my life. It's so comforting to know that I am not alone Thanks! Nora K. Chandler
Nora K. Chandler <nkchandl@gte.net>
Grapevine, TX USA - Saturday, July 24, 1999 at 19:26:17 (PDT)

I was diagnosed with TN in October, 1998. Last week, I had a needle procedure done by what I thought was one of the best doctors in town and I have had more intense pain than ever. The TN was located on the right side of my nose. Now, after surgery, I have no feeling whatsoever from the top of my head down through my forehead and I cannot feel my eye at all, down the right side of my nose and mouth (including the entire right side of the inside of my mouth. I now have to worry about my right eye as I can damage it unknowingly. Eating is painful and I now have intense pain in and around my right ear.....more intense than any pain I've ever felt. I have no idea what to do about any of this. Eating is difficult and if I awaken during the night, the pain prevents me from going back to sleep. I am in constant pain, only the degree of pain changes throughout the day. Even though I cannot feel my eye, I feel pain deep in the eye socket (as though I've been up all night). Thanks for this web page, I couldn't begin to explain all of this to anyone that doesn't know about TN.
Carol Rak <nycerak@aol.com>
Chicago, il USA - Wednesday, July 21, 1999 at 09:18:31 (PDT)

I really need to get some Percocet pills because I have a horrible brain tumor and the doctors will not give me enough.
Moana Kukowski <kukowski@mediaone.net>
ma USA - Tuesday, July 13, 1999 at 19:16:33 (PDT)

My mother is suffering unbearable pain (right side of face). She is unable to take medication due to side effects. She is a member of KAISER health plan, and has seen a neurosurgeon who will perform the Glycerol Injection procedure for her. We are also awaiting an appointment to see a radiologist, to see if she can have the GAMMA Knife Radiosurgery. Has anyone been treated through KAISER with either of these procedures---or with another procedure? Do you have a recommendation for us? Please contact me ASAP? Thank you, Janet
Janet <granmatash @ AOL.com>
Los Angeles, USA - Tuesday, July 13, 1999 at 14:34:15 (PDT)

Deb, Where are you????????
Susan Ray <sray1156@yahoo.com>
Cool, CA USA - Wednesday, July 07, 1999 at 11:54:03 (PDT)

Deb C - Hey, girl, you own this website, yet we can't find you! Do we have your email wrong? Please advise! Thanx -- your pal Jane
Jane Uitti <juitti@sprintmail.com>
Boulder, CO USA - Tuesday, July 06, 1999 at 21:34:22 (PDT)

Hi I am 31 female married with young children my neuroligist has put me on neurontin. He thinks I have tn the meds have helped with the numbness and pressure but not severe ear pain and a sore gland please help do you think i am being miss diagnoised or is this part of tn. I feel like my doctor is very smart but he doesn't really listen to me i feel like i have no one to me. I need to talk to someone please e-mail me . thanks Tia
tia <tiascollectiblegifts@yahoo.com>
mn USA - Sunday, July 04, 1999 at 19:42:51 (PDT)

I am 37 year old female that was diagnosed with this disorder on January 13, 1999. I know to some of you this may not seem like a very long time to be complaining about having this very painful disorder, but you see I have been saddled with chronic migraines for 21 years. I told myself if God had to give me more to deal with, well at least it was with pain in the same area I had had to deal with all my life. This disorder took over the same side of my head as the migraines, but seem to have pushed my migraines to the other side, I guess in a way they felt sorry for me. I am taking 2400mg of neurontin right now and continue to increase 300mg every 3 days. We are working up to 3600mg daily or a bad side effect. I am feeling some relief. I have the pain that last all day with 15 or 20 sharp pains a day. It is maddening, especially when you have 2 teenagers who don't understand or seem to care. For me life goes on, or so it seems to others. I try not to show pain because they don't understand. Everyone except my husband or doctor who has treated me for migraines for 10 years now. He told me eventually I would have to go to a surgeon and I said, I don't regret that day, because headaches have been a burden to me all my life. See I pray that when I do have to have surgery, that a true miracle will happen that all my headaches will be GONE. God watch over all of us who suffer from this disorder and help us to find help.
Rena G. Kidwell
Lexington, KY USA - Thursday, July 01, 1999 at 10:39:53 (PDT)

My husband,Gary has been a chronic back pain sufferer for over 25 yrs. Three years ago this past May he tried to end his pain by shooting himself in the head with a 22 rifle. What he accomplished was to lose his right eye and develop Atypical Trigeminal Neuralgia. He has said that he just thought he had pain until he experienced TN. He had most all of the procedures done, the morphine infusion pump implant, all the different meds and anything else we could find that might relieve him of the terrible headaches and burning in his face. He fought the pain battle daily but on June 5,1999 he could go on no longer. Gary once again attempted suicide and was successful. I knew in my heart that he would try again but I didn't want it to be so soon. Gary was 48 yrs old. We have a daughter Misty 27, a son Gary Lynn 23 and two grandsons Trey 8 and Blake 22 months. Gary was a Christian and I know that he is with Jesus and will never experience pain again. Pain can cloud your thinking if it is out of control. For those of you suffering with TN or any chronic pain don't lose hope. It is my hope and prayer that I can be an advocate for chronic pain sufferers. You are truly my heroes. You fight a battle that is raging within you and takes every bit of strength you can muster just to survive. Please keep fighting. Don't lose hope! I don't want to see not one other family go through the loss of a precious loved one due to TN. I will tell Gary's story by whatever means that is made available to me. I will do my part to help the medical profession have more freedom to give adequate amounts of medications to relieve the suffering of chronic pain patients. I will talk with you any time of the day or night if you need to. Finally, if you are the loved one of a TN patient give them a big hug and remind them how loved they are and what they mean to you. This posting is not meant to be depressing but enlightening. I truly hope I have not offended anyone.
Kathy Whitener <kwhitener@hotmail.com>
Palestine, Tx USA - Monday, June 21, 1999 at 09:59:12 (PDT)

I need mass info. I'm 19 years old, was diagnosed with migraines for months on end, hospitalized for weeks, given countless CAT scans and MRIs and too many spinal taps, yet no answers. All my personal research and symptoms point to trigeminal neuralgia. My team of doctors can't diagnose me, and keep giving me nerve blocks for my oxcipital nerve. No one will listen. They say I'm too young or that the pain I'm in is psychological, that nothing really hurts THAT badly. Please, someone let me in on some info that can convince someone to help me.
Megan Robbins <darkdragon@bigfoot.com>
cleveland, oh USA - Saturday, June 19, 1999 at 21:42:48 (PDT)

I suffered from TN on and of for 2 years. I have been OK now for about a year and a half. I am now 21. I was originally put on tegratol. This worked fine for a couple of months but then the pain came back again. My doctor kept me on these for about a year only uped the dosage. Eventually after I had seen a the specialist 3 times he changed me to Amitriptyline. From the first day I took these I have had no problems. I just pray that it dosn't come back.
Marc Sheeran <shezzy@ic24.net>
USA - Friday, June 18, 1999 at 15:22:26 (PDT)

Info on dental procedures. Already had one pulled now they want to do a root canal. Though I do have an abcess I still don't want to have a procedure unless absolutely necessary, it scares me to death. I am a 33 year old mother of 3. Diagnosed with trigeminal neuralgia 2 years ago. Went through one pregnancy without carbamenzapine. They gave me vicadin(yuck). Didn't think I was going to make it.
Karen <faith@mwt.net>
Muscoda, Wi USA - Wednesday, June 09, 1999 at 20:08:04 (PDT)

I am a 33 year old mother of 3. I was diagnosed with trigeminal neuragia 2 years ago. I have had teeth pulled because of my pain, I am being sent back and forth from doctor to dentist. Now they want to do a root canal and I'm not sure if I need it, now I do have an abcess that doesn't want to go away, but I don't know for sure what's causing it and I'm scared of the pain of having the procedure done. Nobody seems to understand(professionals). Anybody with ideas please let me know.
Karen <faith@mwt.net>
Muscoda, Wi USA - Wednesday, June 09, 1999 at 20:02:47 (PDT)

started having a tingling sensation in my face from my ears to my jaw on both sides.is this the beginning of this tn? i did have pain in the left side of my face andpain in my lower jaw which went away in a couple of weeks. i was washing my face and it feels like if i touch my ears i can feel it in my jaw. someone please help me. i also feel it in my lower lip. i have been getting night sweats too. someone please respond . i live in in. do you know any drs. in the chicago area?HELP!!!
donna dunn <donnadunn@juno.com>
in USA - Wednesday, June 02, 1999 at 22:44:27 (PDT)

Until recently, I had 4 months without pain or medication. The first time in over 4 years. I believe that staying healthy - taking supplements and taking care of myself - made a big difference. And the pain is generally tolerable at the present time. However, before I thought the TN had returned, I was having feelings of fluid behind my eardrum and a couple of times had immense pain around the bottom of my ear. I understand there is a lymph node there. It is clearly not in my ear and I have no ear infection. I wonder if anyone else has had this. Frankly, it is much more painful than my face. And I have tended to find that the pain in my face goes more into my ear this time (I have only had problems to date with the lower two branches of the nerve).
Carolyn Maynes <smaynes@cyberus.ca>
Canada - Wednesday, June 02, 1999 at 19:31:33 (PDT)

I wrote once before after MVD surgery for TN. The initial results were very good. It has been over a year now, and I have some blurred vision in my left eye, and a constant nagging "squeezing" sensation over my left eye. I don't know if another blood vessel is being compressed or if this is just a result of the surgery. The horrible pain has not come back. This squeezing sensation is usually accompanied by a headache. Just wondering if anyone else experienced this after surgery.
Linda Toth <lindatoth1@yahoo.com>
Kinston, NC USA - Tuesday, June 01, 1999 at 11:52:55 (PDT)

to lois pagliaroli I tried to e-mail info on anesthesia dolorosa but mail was returned due to incomplete e-mail address contact me if you still need this info .....Joe
joe runyan <mars90@worldnet.att.net>
USA - Sunday, May 23, 1999 at 21:42:41 (PDT)

I have atypical facial/paresthesia neuralgia WITH anesthesia dolorosa, pain behind the eye. I am deperately looking for info on AD. Can anyone direce me?
lois pagliaroli <ljpkoala>
USA - Saturday, May 22, 1999 at 19:49:14 (PDT)

I left out my e-mail address on my last comments, so here it is.
Linda Lobeck <lml38@up.net>
Kingsford, MI USA - Sunday, May 16, 1999 at 16:59:05 (PDT)

I have been diagnosed with trigeminal neuralgia for nearly three years and I am 38 years old. I have been on varying doses of Neurontin and other medications with some success. The facial pain is limited to my right side and I have also experienced numbness. In addition, I have had neck spasms and one-sided headaches, which have been helped with a good physical therapist and learning about trigger points for the headaches. Does anyone else have neck spasms?
Linda Lobeck
USA - Sunday, May 09, 1999 at 21:20:37 (PDT)

What can I say that the many of you haven't already said. I have suffered the torment for 5 years. Recently, it is more intense and has lasted for weeks (months) at a time. I am an elementarly principal. To "smile" every day, when most of the time I want to cry ... well, I know you understand. May we all find comfort, some day / some way.
Tim Flint <tflint@power-net.net>
Shepherd, MI USA - Thursday, May 06, 1999 at 19:39:32 (PDT)

I was diagnosed 4 years ago with TN. My regular doctors didn't know what it was. I was given Vicoden, Tylenol 4, etc. I was virtually overdosing myself on Ibuprophen and Tylenol every day. I was a walking zombie. I still had the pain. Finally, I went to the dentist. After a full mouth x-ray revealed no mouth problems he referred me to a neurologist and to have an MRI. I went to the neurologist, I explained my symptoms, he handed me a bottle of Tegretol and by the next day the pain was gone. I give a lot of thanks to my husband and son for sticking with me during that time. I don't know how they stood me! I have been researching the Microsurgical Microvascular Decompression. Has anyone had it? If so, let me know how you did. Thanks, Raimonda
Raimonda Whalen <rwhalen@nexus-ioa.org>
Beecher, IL USA - Wednesday, May 05, 1999 at 13:51:32 (PDT)

I am 32 years old and was diagnosed with TN in July of 98. I was placed on Neurontin, Tegretol, Baclofen, Amitriptripilyne, and Prozac AT THE SAME TIME!!! The meds. would work for a little while and then the pain would get worseagain so they would either add or increase the meds. I was bascially a walking zombie! People would ask how I'm functioning and I would tell them I had no choice. I am a special education teacher for grades K-3 , I have 2 boys (5 and 9), and my husband drives a truck so he is gone during the week! The doctor would ask me to hold my hands out and walk a staright line. Of course I couldn't! I couldn't even talk without slurring my words. I was also driving 30 minutes each way to bring myself and my 2 children to school. When the pain got more severe, there was no way I could increase my meds. My body had already gotten toxic from too much of something--of course nobody was checking my blood count! Anyway, I had radiofrequency coagulation November 5 which was a MAJOR fiasco!! I was awake during the majority of the surgery (very alert!), was in bed for 2 weeks afterwards on hydrocodone, and had double vision for MONTHS!!! I had to take a medical leave from school as I was totally unfunctionable. Anyway, my vision finally started returnig (YEA!). But two days ago I had a recurrence of my TN!!!!! It is worse this time as I am not able to touch my back tooth, even to close my mouth. I put myself back on the Neurontin and Tegretal! And I just took a amitriptyline because the pain will not go away. I have continuous pain, then skyrocket pain. I always have to one up everyone (LOL) I am in extreme pain. I am not willing to go through the same surgery again! That was HORRIBLE! I don't know if it was just my neurosurgeon or what, but I won't have either! Somebody PLEASE help me. I am so upset. I was finally getting my life back together! People were commenting on how glad they were to see "Donna" back again!!!!! I can't do this again!!!!!!! I just can't! I don't know what to do. I can't function being so drugged up, but I can't relive that horrible experience of surgery again either! Sorry to carry on so, I just don't know what to do and people have a hard time understanding. I know they mean well, but they just can't understand. Delia28466@aol.com Donna
Donna Means <Delia28466@aol.com>
Madison, TN USA - Friday, April 30, 1999 at 06:29:45 (PDT)

I have been dealing with TN for over two years. The pain has been progressing so rapidly and severly that I am now taking 2400mg of Tegretol and still have breakthrough pain. I have contacted MGH and they have referred me to the Mayo Clinic. My question, If you had one Neurosurgion to trust, who and where would he/she be? Travel is not an issue. With this much pain, I travel to the end of the earth for the right person.
Tim Phanco <tphanco@rehrigpacific.com>
USA - Sunday, April 25, 1999 at 19:05:22 (PDT)

I have had diagnosed MS for 19 years before the TN began a year ago after extensive dental work. It was a sharp, shooting pain in my lower right molar. I figured it was more dental problems. I went to a root canal specialist who said my teeth were ok. Then I discovered a trigger point and my regular dentist suggested TN. First time I had ever heard of it. It lasted 3 weeks and then went away. Out of sight, out of mind. Now, a year later it has returned and is much worse. I can't talk or eat much of the time. I live on Ensure taken thru a straw. The Internist put me on Tegretol. That was 6 days ago. It has helped a little. I'm pretty upset over the prospects. The pain has shut me down more than 20 years of MS.
Lars Howard <lars@indy.net>
Carmel, IN USA - Saturday, April 24, 1999 at 19:23:09 (PDT)

THANK YOU VERY MUCH FOR THIS WEB PAGE. I LEFT THREE LETTERS UNDER THE WEB PAGE OR GUESTBOOK AT MGH HARVARD. I WOULD APPRECIATE IF ANYONE WOULD READ THEM. I AM JUST TOO TIRED TO RETYPE THEM. I WOULD APPRECIATE ANY INSIGHT OR OPINIONS FROM ANY OF YOU. THANKS AGAIN A MILLION FOR TAKING THE TIME AND READING THEM, AND DEB,THANKS FOR THIS SITE AND I KNOW GOD WILL TRULY BLESS YOU FOR BEING SO CONSIDERATE OF OTHERS AND HELPING US WITH OUR SITUATION. THANK YOU, AGAIN.
NANCY <SGFLY@AOL.COM>
SIOUX FALLS, SD USA - Saturday, April 24, 1999 at 15:22:56 (PDT)

Just found this website and I am so thankful. I am a 54 year old woman who has suffered with TN for over ten years. I feel that this illness has completely altered my life. I never know from one day to the next how I am going to feel. I have never been able to pin down what exactly brings on my attacks. I am presently trying accupuncture. I take neurontin, and have given up on tegretol as I couldn't stand the side affects. I look forward to hearing from others. I will do my best to help
Nancy Rowan <bnrowan@seaside.net>
Duncan, B.C., Canada - Thursday, April 22, 1999 at 22:44:58 (PDT)

Diagnosed on 14th of April. Had never heard of T N. Hope the medication works. Never experienced such pain. Had no idea so many people suffer from T.N. Reading the letters has helped me greatly. Although I would NEVER wish this pain on anyone, I'm glad to know that I'm not alone. NORMA
Norma J. Hodges <mawmaw @net door.com>
Hattiesburg, Ms USA - Sunday, April 18, 1999 at 16:08:37 (PDT)

This is a great site. I have been looking for just such a site ever since I was diagnosed with TN. I have since had MVD surgery and am virtually pain free. Love to talk to any one who has the problem.
Linda Toth <lt37856@aol.com>
Richmond, Va USA - Saturday, April 17, 1999 at 13:43:49 (PDT)

...After a year of tests, doctors, drugs and radiology (and a lot of patronizing attitudes) I was diagnosed with TN yesterday. The past year has created it's own set of problems (that I will have to resolve)..I am VERY happy to finally be taken seriously..I think my neurologist is a saint (although he said my case is so textbook that my PCP should have diagnosed in the beginning)...I just can't help being resentful towards all the mismanagement and disrespect I've been a victim of. Anyway-Thanks for the page!..I am starting Tegretol cautiously..and look forward to pain-free living with my perfect 2-yr. old son....
Ellen Braun <rumwell@msn.com>
Bellevue, WA USA - Wednesday, April 14, 1999 at 07:58:37 (PDT)

Last August 1998, my father-in-law had the gamma knife surgery done in Seattle, Washington. They attach this brace to his head and "zapped" the nerves that cause the pain. The worse part was the MRI. He chose this procedure because it did not require an incision. The following 2 months the pain continued, but even worse. Pain moved from the eye, to the cheek, and to the tongue. After the fourth month, NO PAIN. He is happy that the pain is gone but now has lost the sense of taste on one side of his mouth. Has anyone had a similar experience?
David Giffel <giff@earthlink.net>
Indianapolis, IN USA - Tuesday, April 13, 1999 at 18:10:27 (PDT)

I was just diagnosed with TN three days ago and my doctor told me that there was a cure. Now I find these letters and realize that there is no cure just hopeful relief. I am scared stiff. I have never suffered such pain, not even during child birth. I can't eat and have lost 9 pounds in the last week. I am to start Tegretol in a few days. I was told that I have to have blood work done every week while taking this drug as it lowers your blood count.I am so scared and so tired of hurting. I can't even enjoy my children or grandson anymore for the pain. My husband has been so understanding but I am afraid that he will only tolerate so much as he doesn't have any idea how much I hurt. I am interested in hearing from anyone that has TN and that can help encourage me. Melinda Leady
Melinda Leady <Outstres@hotmail.com>
So. Roxana, IL USA -

Can anyone describe the onset/progression of TN? I have had intermittent (once every few months, usually occurs several times within a 2-3 day period), intense shooting pains that seems to originate in the back of my head near the left ear, shooting up literally through my head and behind the eyeball. It is so sporadic, and the pain is so brief (but unbearable) that I haven't talked to anyone about it. I'm 30 years old and I can remeber having this pain since I was about 25.
Pam <pamg@mckinney-silver.com>
Raleigh, NC USA -

Priscilla is my favorite aunt and has been horribly afflicted with Trigeminal Neuralgia for about 10 years....she is scheduled to undergo microvascular decompression tomorrow...and we are all praying for a miracle!
Priscilla Carlson
Hudson, NH USA -

I need to know more about this disease. Please send me any ibfo you can. I a await your response.
Dayna Davis <crazy@mscomm.com>
USA -

All I know at this time is tht after 3 years I finally found a dr that knew what I have and am going through. I am to see a neorogilist later this month . Would love to hear from others that have this awfull awfull pain, I am 53 yrs old male and this last bout made me cry just from sneezing, taking drinks of water licking my lips you name it and it hurt and I mean hurt hard. there have been times if someone would have offered to hit me in my jaw I would have let them. whoever writes I will get back and in the mean time I will pray for the rest of us that have this. Thanks Phil
phil thralls <dlbthumb@si-net.com>
connersville, in USA -

I just spent the evening reading everyone's comments and I feel for each and everyone of you. I'm 43 years old and was diagosed at 38 with TN. I have a inter-cranial cyst that is affecting my trigeminal nerve. I was on 1200 mg of Tegretol but now I'm trying to take 1000. (800 just wasn't enough) I haven't had any surgeries yet, but I'm interested in hear- ing about all the choices. This Thursday I'm going to the Oregon Health Sciences University to a new doctor. I don't think I can take this much Tegretol forever. I have times when I can't talk, eat, move, etc for about a week, then I just have jolts once in awhile-maybe while I'm eating it'll surprise me and make me jerk or to brush my teeth. I've been reading about the gamma-knife surgery and it sounds interesting. If you have any comments to me, please send them. Good luck to everyone.
PAM FORBES <pgdrf@uswest.net>
PORTLAND, OR USA -

hi: my name is monika, and my mother has been suffering from trigeminal neuralgia since 1992. i'm glad i've found a place where everyone knows what I'm talking about and i don't have to explain!! i just wonder why i takes some doctors so so horribly long to diagnose this disease. when my mum started to complain about these horrible jolts of pain, TN was the first thing that came to my mind, and i'm a lay person as far as medicine is concerned. but her doctors just wouldnt believe it and she went on a long and nightmarish odyssey before anybody took her seriously and she found help. i dont understand why it had to take so long. unfortunately, she cant tolerate carbamazepin (sp?), but she's painfree right now. thank god. she still feels isolated and misunderstood often. i'm glad i found this page to tell her about. thanks for "listening". monika
Monika Geilern <geilern@uni-muenster.de>
Muenster, Germany -

Good evening folks,my name is larry and i'm 41 years old and this is my 20 year anniversary from my first experience of this disease.I can still remember where i was and what time it was like it happened yesterday.Back then to be honest the doc's didn't have a clue what was causing all this intense pain so needless to say there is nary a drug i havn't tried.Please don't misunderstand me,today i hold no grudges toward the medical people.They simple didn't know so i was shuffled from doc to doc till finally i met mine savior as i like to call him.He had in 1987 just moved to Victoria and was an ear,eye and throat specialist.He was trained in Los Angelos and it was only by sheer luck that his room mate when he was in college had all the same symtoms as me which in turn made him curious as to what this disease was all about.He used a surgical technique using nitrous oxide to freeze my right side nerve.At the time of my first surgery it wasn't covered by medical because if you all can imagine the gov't considered it to be ELECTIVE.I was willing at that point to try anything so what ever it cost i was willing to pay.I should also mention that at that time he had people flying in from all over the world to have the technique done to them at $10,000 a go.This man knew i didn't have that kind of money so he charged me $100 dollars to cover the paper work and thats it.What an angel.It was through his first hand knowledge of living with another man for 4 years in med. school that gave him the great compassion he displayed to me.Anyway,i ended up having this surgery on 4 different occations and i have been pain free for 2 years now.I won't use up anymore of this valuable web site space but i would if i may leave you with some final thoughts.Of course alot of things happened in my life over the past 20 years but one of the most rewarding aspects is the amount of lay councelling i've done on behalf of the doc's.Lots of families don't know how to cope with us folks till they learn that others are out there just like them.If anyone would like to e-mail me or get ahold of me through ICQ (15414028)and just have a down to earth chat please don't hesitate.I believe the sharing of our experience ,srength and hope is one of the few positive ways we can help each other.Take care and thanks for the site!!
Larry Cole <lcole@islandnet.com>
Victoria, BC Canada -

My name is Joan, and I am 32 years old. I have been dealing with TN for a number of years. The first medication I was put on was, Baclofen. It made me feel really "out of it" and I couldn't function. After another try or two, we tried, Amitriptylin. It has greatly reduced the severity of the pain. I had been having about 200 jolts, and I mean jolts, of pain every day, Now it happens only a few times per day, and they are less severe. At least I think they are, either that, or I've become so used to the pain, I just deal with it better. It's a terrible thing to have to think about every day. I also have Multiple Sclerosis. Nobody can truly know the pain caused by TN, unless they've experienced it. My husband and I have 5 children, and I plan to keep up with my family for as long as I can. There are days when I feel like I can't go on,(I feel like giving up)but that doesn't last long. I feel like I have a really good neurologist, that really listens to how I feel, and gives me some options about my treatment. LIfe is extremely busy for us, and I guess I feel that if I weren't busy, the disease would win, and take over, and I can't let that happen, not yet. To look at me, you probably wouldn't think there was anything wrong with me, but when I take my handful of pills every day I know. Would email with anyone who feels like talking! Joan
Joan Powers <wrpowers@wctc.net>
Wisconsin Rapids, WI USA -

I think I have TN and TMJ- no doctors in this area to confirm, but I have horrible pain. No meds, no treatment. I'm totally homebound now with the pain and have about reached the end of my rope. I've tried so many things that the skin on my face stings if I even touch it. I also have Lyme Disease which seems to be the cause of all this. I'd love to talk to someone else who has these problems. Reading the comments made me feel less alone. I live in a very isolated area and am alone alot. Thanks.
Jayne <mufcake@coffey.com>
USA -

I recently underwent a MVD for GPN and the surgery was unsuccessful. What a great disappointment!! The neurosurgeon has suggested another surgery to cut the nerve. Would like to hear from someone who has had this happen to them. Does anyone know of any other options??? Tina
Tina <agray@techplus.com>
Brandon,Manitoba, Canada -

Hi: My name is Scott I am 43 years old. I was searching the WEB for information on TN and ran across this WEB site. I read some of the stories. I was luckier than most my dentist knew what I had. I was referred to a nuerologist and he put me on tegretol. The TN went into remission for a while and now it is back. I would like to talk with some one about this. Please E- Mail me at Scoirv@aol.com
Scott <scoirv@aol.com>
Bellingham, WA USA -

Hi Aunt Debbie and Uncle Mike I am using the school computer. I like your web site.
Travis Dalton
USA -

I am 60 years old. I was the "perfect" patient. I had my teeth cleaned every 6 months, brushed my teeth faithfully. I've been under my primary physician's care for 20 years. I always try to do everything that I'm advised to do by the professionals. That is what I was always told was the right thing to do. Why go to a doctor if you aren't going to follow their instructions. Well, I think that is a give and take situation. I believe that they should keep up with what is going on in the medical world!!!! I was referred to on oral surgeon by my dentist of many years. I was the first patient he had ever referred for oral surgery too have all their teeth removed. I had a mouth full of beautiful teeth, white, & straight. I had been a model when I was young so I was always particular about my appearance. Anyhow, I had all of my teeth removed, dentures made and in place. My mouth was healing nicely!!! But the pain was getting worse. A week after the surgery, my surgeon removed a blood clot from the upper right side, leaving an opening to my sinus. I was told to be careful not to get anything into the opening!! How can you eat or drink without getting stuff into your mouth? Well I was told I had an infection and was given antibiotics. This continued for months. I finally had my physician refer me to an ENT who ordered a ct scan. The scan revealed "a cyst and foreign debree" in my right maxullary sinus. The ENT then referred me for a 2nd opinion, to see an opthomologyst and a neurologist. That was the begining of a 2 year nightmare!! I am on SSI so I am a slave to the system. 5 ENTS, 2 neurologists, 1 oral, maxiofacial surg. later I was diagnosed with TN. My primary had thought it was TN months earlier but wanted another diagnosis. The ENTs and doctors I had gone to simply didn't want to get involved with me because I was the result of malpractice. The oral surgeon had not done the right things for me. Because I'm on med-ical he only did the bare neceties. If I had been an insured patient he would have closed the opening to my sinus at the time of surgery and this would not have happened, or at least not this way. Legally I could do nothing because no doctor wants to "rat" on another doctor. I had to drop my suit because of that reason. But, now 2 and a half years later, I am finding out information that I should have had in Oct 1996. In his deposition, the dentist I had trusted, said my teeth were healthy, he was just tired of my constant commplaint of pain!!! He had givenn me a medical order to remove my teeth because he was annoyed at my complaint of pain.!!! If you are in pain you are supposed to inform your professionals, right? Wrong!! or at least it what I'm being informed, now. The dentist didn't know about TN. He only learned about it after my surgery when I questioned him about what was happening to me. If he had known, I would still have my teeth in my mouth instead of sitting in a jar because it is too painful to wear them!!! Patients are at the mercy of the professional. They should be informed!!! They should know about problems that may be out there that the patient doesn't know about. That is why he went to school isn't it. I am new to the computer. 2 months ago I had never been on a computer. Now, I've accessed TN cites and been educated. I most probablly had TN for years, and the condition has been masked by other problems. My primary physician has been trying to treat me with his hands tied and blindfolded, because the "system" won't let him take care of me the way he used to. Now he can't put me in the hospital or get tests unless somebody sitting at a desk in some office, who isn't a professional, doesn't think the nests or stay is required. My doctor was finaly able to get approval for me to see a neurologist that specializes in pain. I have a lot of faith in him. He talks to me and doesn't make me feel like I'm coming from left field when I tell him I have a burning, pain, like electrical shocks. He understands.!!!!! If you know where I'm coming from You will understand. It is so frustrating and embarressing when "professionals" look at you like you are a hypochrondiac. My spelling may be off, but I'm sure you all know what I'm sayinng. There is no pain like this. I was burned when I was a child, nearly died, spent a year in the hospital. Had my burned skin pulled off with tweezers, That was painful, awful pain that you never forget and remember everytime you see a fire or feel heat from one, but this is worse. It consumes your whole mind. I started with my gums and mouth, then my face and head. Trying to describe a pain in the head--that is not a headache-- They look at yoou like your nuts, anyhow, the pain has getting worse. The vision in my right eye has gotten so bad. The doctor says the signals from my brain are being detoured, or to that effect. The right eye isn't working with the left eye. I have blurred, double vision. I've worn glasses since I was 8. Now glasses hurt my face and head where they touch. I'm having some pain in my lower extremeties, now. which may be caused from my meds. But what can I do but take them. maybe they will work if given time. I hope and pray it is so. The neurologist has mentioned that I may require surgery, but the thought that I may never again feel my grandchild kiss my cheek is not an incouraging thought. I was on tegratol, now am on neurontin. I'm having a problem with swelling which is a side affect of neurontin. I pray for a day that I might be pain free. My family are mostly very supportive, but time has numbed their understanding and tollerance. I would answer any and all e-mail. I pray for all who are affected personaly or someone they know. It is a good feeling to know that I'm not alone, thought I wouldn't wish this condition on a dead dog!!! I'm sorry for bbeing long=winded. I tend to be so when it is subject I'm emotional about. My address is lets@cosmoslink.net Please mail me so we can get this condition known about by the people who make all of the laws and can help others in the future. I am sincerely yours, Lauretta Pendergraft of Buena Park, Calif.
lauretta ppendergraft
california, USA -

Hi - I have waited a long time to make this entry and I have started to make it many times! I had atypical facial pain last fall but I have been pain free since October 24. I have waited to see if the pain would come back, and I know it is early, but it hasn't - and I wanted to share my experience. Maybe it will help. My history is remarkable for bilateral traumatic TMJ I suffered in a car wreck in '91 and for which I have taken Nortriptyline (similar to amitriptyline) and Flexeril nightly ever since. I have daily headaches which are certainly manageable, although I sometimes take a NSAID for them. Last summer, I began having very sensitive teeth on the upper left side. A lot of pressure and temperature sensitivity. I had some fillings repaired, but the pain worsened all summer. In August, I began having horrible facial pain down the left side of my face involving the outer rim of the eye, the left front facial area, all left upper teeth, and a portion of the left lower teeth. I would attributed it to TMJ except for the teeth. I began having buccal nerve blocks in the mouth which lasted about 4 hours, and one of the oral surgeons told me I had TN and put me on Tegretol. I saw an dental pain specialist and had was told that I had TN and that my teeth were especially good conductors of current. I began NSAIDS and naracotic pain releivers in addition to the Tegretol. I had all crowns on the upper left side cut off and the roots examined. One root that looked suspicious got a root canal. I then saw my Neurologist in September and scheduled an appointment with a neurosurgeon for October. The pain steadily worsened from occurring only at night to occurring all of the time. I had been able to hide the details from my family until then. They knew I hurt badly, but I would retreat to my room and bury my face in a pillow until the pain abated. Sometimes it would take hours. My attacks generally lasted 2-4 hours during which there would be pain spikes as often as every 5 minutes. I used NSAIDS although I knew they did not work (I am a pharmacist) but hoped to stave off TMJ complications. I used many feedback, psycological, and remote stimuli techniques many times with limited success. I used counterpressure and pressure points with limited success. I went to the emergency room 5 times in 6 weeks. I discovered that chronic pain is not very welcome there. I did receive excellent treatment from one ER doc whose aunt had TN. I had 2 panorex facial X-rays, an MRI, a CAT, and many skull X-rays. My neurologist advanced me through Darvocet N100 and Percocet which are toxic for me at chronic high doses to immediate release morphine (MSRI) which I took in fairly frequent doses to little relief - that surprised me to the point that I became very discouraged about the prospect of any pain relief. I did use topical lidocaine 2% viscous on my gums, tongue roof of my mouth which provided some numbing of the worse pain if applied early enough. I saw the neurosurgeon in October with the prospect of a gamma knife procedure to "decompress the trigeminal nerve". She sent me back to gather more medical history and documentation and rescheduled for November. I had made it clear to her that I would consider the gamma knife, but would definitely go for cutting the nerve if nothing worked. By late October, I had attacks all night and many during the day. They were so frequent that I knew I would have to stop working soon if for no other reason than I could get no sleep. My neurologist had put me on Neurontin 1800mg/day and increased the Tegretol to long-acting, 1200mg/day. These also made me sleepy and I often had to pull over on the 20mi drive home after work to nap! In late October, in one night, I took 120mg of MRSI over 6 hours of intense facial pain attacks to absolutely no relief. The next afternoon, I had a very bad attack in front of my husband who promptly took me to the ER even though I told him they probably could not do much for me and that it would probably spontaneously resolve if I waited a few more minutes (I mumbled this into a pillow I was biting to keep from screaming). At the ER, my neurologist was called to see me there. We told him about the worsening pain and the ineffective morphine. We asked about different kinds of chronic narcotic pain relief. After ascertaining that I was seeing the neurosurgeon, he put me on Dilaudid 1-2mg every 3-4 hours and told me to take them BEFORE the pain got rolling. I started that afternoon and worked with the dosing and breakthrough attacks for 24 hours before finding 2mg every 2-3 hours worked best. I took it around the clock and in another 48 hours, the pain was gone the attacks stopped. I reduced the dose and regimen over the next few days to 2mg 3 times a day without any attacks. I my neurosurgeon and told him and with his guidance, continued a maintainance dose at that level until all of my dental work was repaired and I had seen the neurosurgeon. When I saw the neurosurgeon 2 weeks later, I told her of the "cure". She as well cautioned me to continue dosing until my dental work was adequately repaired. I asked about the gamma knife procedure was told that she had recently reviewed the results of the procedures she had done and had concluded that for my kind of pain - atypical, the procedure did not work. The only surgical course would have been damage or cutting of the nerve. As I no longer had any attacks, she discharged me from her care. I decreased my dose of Dilaudid until I was completely off the narcotics by the end of November. I went through a physical withdrawal which I thought was a bad case of the flu. 8 hours of stuffy head, vomiting and diarrhea - I have had worse with a cold and food poisoning. By the middle of January, I had stepped down off of the Tegretol and Neurontin. I have been pain-free since October 24. I have been discharged from the care of my neurologist. And while I will always fear any little twinge of pain in that nerve, and any little dental zing on that side, I know what had worked for me and what to do. Some things to point out that helped. I kept a diary/logbook of my days because no one would believe how painful and horrible it was if I didn't document it. I documented the time, the pattern of pain, when any meds were taken and their effect, the course of the pain attack, the resolution, and noted all times associated with these and any circumstances that may have kicked off the attack or affected its course. I tried many non- drug treatments several times and documented the effect of each one. I provided past medical history, past X-rays, anything the doctors wanted - and they wanted a lot of stuff. I tried to have enormous patience - I knew few would treat chronic pain especially neurological pain aggressively (you can't see the cause and have to rely on the patient for evidence). I fully expected to have to have the nerve cut. I consider my cure to be no less than a miracle, but would begin the therapy again in an instant if the atypical TN returns. And it may. I think that for me, dental problems are the sensitizer for that nerve. The longterm TMJ hightens the nerve sensitivity in the entire region. It is likely that dental work on that side in the future will kick it off again. My plan is to have progressive root canal work done on the upper left side until all teeth there have been root canaled. Yes, the pain was that bad that I would do some preventitive nerve destruction. I will keep my logs and diary so that I can spot the trend more easily. And I will take VERY GOOD CARE OF MY TEETH and WEAR MY MOUTH SPLINT EVERY NIGHT for the TMJ to avoid aggravation of the nerves in that area. I hope this has helped. God knows it was a horrible time. I remember asking the neurosurgeon to cut the trigeminal nerve at the second branch so the pain would stop. She said that I would have no feeling in that side of my face and I might never smile again. I said yes, but I would be smiling inside. If I can help you, please write to my e-mail. I am very slow to check my mail (I am back to work more than full time now) and slow to answer - please be patient with me. And thank you for your time. Alice (alix21@aol.com).
alice <alix21@aol.com>
Norman, OK USA - Tuesday, March 09, 1999 at 23:59:46 (PST)

What a wonderful place!I'M 49 & have TN 9 yr.Am new to computers & TN was the first thing I looked for!Would love to chat wth others.This has opened a whole new world me.THANKS!!!!!
Linda Bragg <LBRAGG6918@AOL.COM>
Macon, Ga USA - Tuesday, March 09, 1999 at 18:20:11 (PST)

Hi i`m 37 years old and have had TN for 14 years,4 of those years no one knew what it was.I have it on both sides of my face,and have had it go into remission twice.It`s now back and the doctor said it`s here to stay the PAIN is more intence than ever. I`m on LIORESL,TEGRETOL and ELAVIL to help me through the day. At the moment it`s working but I`m always worried of the day the meds stop working. This problem has cost me a relationship. I`m glad to find out that i`m not alone in this battle. Has any one had good luck with a surgery,I wood like to know.
PHILIP <oz144@aol.com>
MI USA - Thursday, March 04, 1999 at 17:16:08 (PST)

What a relief, and sad too, that so many suffer from this affliction. I have had this atypical tnn for well over 20 years. I was wrongly diagnosed with with MS while still in my 20's. After 3 years and a spinal tap the doctors said it was some type of neurological "thing". Then the facial pain began. Electrical shocks on the left side down to the teeth, but after 2 or 3 weeks ending with an outbreak of blisters inside of my left nostril. I then had a root canal on the left incisor upper tooth, which became infected. After treatment, the facial pain came back. While teaching school on an Army Base in Germany, I had a severe attack beginning in my left ear, which left me reeling for I had no sense of balance. I will say, the German doctors are thorough. I spent 2 weeks in 2 hospitals, one eye, ear and throat where they checked for sinus problems, and then to the neurological clinic where I was given another spinal tap, MRI, and numerous other tests. The doctors there thought the source was viral, either herpes or the type that causes chicken pox or shingles. My train of thought is breaking up, because I'm having another pain attack. My question is, Does anyone that has atypical tnn get relief from these surgeries. My neurologist says he cannot help me anymore medically because I cannot tolerate the drugs, I've been on all of them.. Acyclovir did stop the pain for months, but I'm afraid it is not effective anymore. Would love to know if anyone else has been told they have this viral connection. Gloria
Gloria Blair Gaddis <gloria@k-online.com>
San Diego, CA USA - Wednesday, March 03, 1999 at 19:59:32 (PST)

Testing new domain
Michael
USA - Tuesday, March 02, 1999 at 20:41:15 (PST)

I have only had relief, after 6 years of TN, with Lamictal. Has anyone else had success with this drug?
phyllis <pcox@sscc.cc.tn.us>
memphis, tn USA - Friday, February 26, 1999 at 19:51:15 (PST)

I was just diagnosed with Tn if someone could E-Mail me some information on it I would greatly appreciate it I am only 19 years old.
Rachael <Alexis_98_2@yahoo.com>
PA USA - Friday, February 26, 1999 at 12:23:35 (PST)

Hi my name is Nancy Foster and i am 25 years old. I stumbled across this website today and was very glad. I was diagnosed around 5 years ago with GLOSSOPHARYNGEAL NEURALGIA.. I have suffered from the symptoms for 10 years. I get extreme pain on the left side of my throat and into my ear. Very painful to swallow or move my head at all. I went through many doctors and specialists. Finally in Regina, Saskatchewan, Canada an emergency doctor diagnosed me. Although it was bad news it relieved my frustration, since every other doctor told me it was just an earache, sore throat or muscle spasms. It is great to know there is other people to communicate with, because like me iam sure you go through the trouble of NOBODY understanding. I now take Tegretol everyday to PREVENT the attacks. I haven't had a major one since July 1 1998. I am greatful, and i hope it continues to be successful for me. If anyone with the similar pain would like to talk please email anytime. I am willing to share my comments and hope you will too. email nancylfoster@yahoo.com
Nancy Foster <nancylfoster@yahoo.com>
Calgary, Ab Cananda - Thursday, February 25, 1999 at 06:59:21 (PST)

I have been suffering from TN type syptoms for 10mos now. I'm on my 3rd medication now this one seems to help without alot of side effects. I saw the neurosurgeon last week and I 'm scared to death of the thought of surgery. If this medication keeps helping me to make the pain tolerable I guess I will just wait a while. I'm only 34 yrs old and a mother of 2 small children. The neurosurgeon isn't hundred percent that the surgery will help because I'm not showing all the typical signs of TN because my pains are very random and are not always caused by a trigger. But they are in the general area of the trigeminal nerve. Thanks for listening to me I'm not always sure people who don't have this pain understand how painful it is. My husband really tries to understand but I think he is starting to get aggravated that no one seems to have a answer for my problem .
Tammy Kozlowski <tdjnk1989@aol.com>
Chgo. Hts., Il USA - Thursday, February 25, 1999 at 06:43:08 (PST)

Hi, I'm Brenda and I have Trigeminal Neuralgia. I am having a hard time right now with the pain. I went to the doctor and he put me back on Neurontin, go for another MRI next week. It's reassuring to know I'm not alone in this condition, most people can't comprehend what you are going through. Would love to hear from anyone. tazsuz@yahoo.com
Brenda Dorn <tazsuz@yahoo.com>
Saluda, SC USA - Wednesday, February 24, 1999 at 13:08:13 (PST)

Hello. My name is Nancy Foster and i was diagnosed with GLOSSOPHARYNGEAL NEURALGIA around 5 years ago, although i have suffered symptoms for 10 years. I experience excrutiating pain in my throat and continues into my ear, and is always on the left side. It is very nice to know i have some people to talk to. Like all of you iam sure NOBODY understands the pain. I went through many doctors and specialists. I was always told it was just " an earache, sore throat, or muscle spasms." After years of frustration i was finally diagnosed by an emergency doctor in Regina Saskatchewan, Canada. Although it was bad news and i didn't really understand, at least it relieved some of the frustration. I was taking TEGRETOL whenever an attack occured, but was later told i must me taking it everyday to actually PREVENT the attacks. I haven't had a major attack since July1 1998. Tegretol seems to be working and iam greatful for it. I luckily have had no real side effects. I would love to hear from anyone who has the same effects. Your comments would be greatly appreciated, as well iam willing to share any information. THANKS LOTS for the website. Email anytime nancylfoster@yahoo.com
Nancy Foster <nancylfoster@yahoo.com>
Calgary, ab Canada - Wednesday, February 24, 1999 at 11:53:12 (PST)

Sorry everyone my message left the wrong email address It is nancylfoster@yahoo.com Would love to hear your comments
Nancy Foster <nancylfoster@yahoo.com>
calgary, ab canada - Wednesday, February 24, 1999 at 11:35:47 (PST)

Hi. My name is Nancy Foster. I stumbled across this website today and was very relieved to be able to communicate with others that have the same disorder. I was diagnosed with GLOSSOPHARYNGEAL NEURALGIA around 5 years ago, although i have suffered symptoms for about 10 years. I experience excrutiating pain that occurs on the left side of my throat and continues into the ear. Like most of you, you may had to go through the same frustrations as me = going to see many different doctors and specialists. I found it very hard to deal with the whole thing because nobody could ever tell me what was wrong. I would get the usual " you just have a sore thraot, earache or muscle spasms in the neck. It was very frustrating. I finally got diagnosed by an emergency doctor in Regina, Saskatchewan. Canada. Although it was bad news at least it relieved some of the frustration. I haven't had a major attack since July 1 1998. I was told to take TEGRETOL whenever i got an attack, but was told by a specialist to take it everyday to actually PREVENT the attacks. So far it seems to be working. I would like to hear from anyone who is taking Tegretol. I have had no real side effects which iam greatful for. It is very refreshing to know that there is people out there to talk to. NOBODY has ever seemed to understand the pain, except for obviously the people that have it to. Please feel free to email me anytime i would love to hear any comments, and i am more than willing to share my experiences as well. THANKS UNCONDITIONALLY for this website. my email nancylfoster@yahoo.com
Nancy Foster <nancylfoster@yahoo.com>
Calgary, ab Canada - Wednesday, February 24, 1999 at 11:34:01 (PST)

Deborah, Here is my E-Mail address. Thanks!
Barb <sours@juno.com>
USA - Wednesday, February 24, 1999 at 07:49:00 (PST)

Barb and all others....If you would like to have me reply to you, please put your email address on your entries or email me directly. I would love to talk to you....signed, Deborah, owner of this web site.
Deborah Creps <deborah@creps.org>
CA USA - Tuesday, February 23, 1999 at 18:47:10 (PST)

Thanks for such an informative page! I have had severe pain in the left side of my face and temple region for about 6 years now. My pain has been diagnosed as cluster migraine. Last year I went to a pain specialist who told me that my pain was Trigeminal Neuralgia. My pain now shoots from my left temple down across my cheek and to my nose. The top row of teeth feel like they will fall out because the pain is bad. I have numbness across my cheek. It is hard to eat and apply makeup. When I try to brush my teeth I hit a trigger zone that sends me into excruciating pain. My Neurologist still says it is Migraine and will not give me a definite diagnosis of Trigeminal Neuralgia. He did start me on Tegretol and the pain did not get a lot better so he added Neurontin too. Any suggestions on how to get a definite diagnosis of Trigeminal Neuralgia? I have the classic symptoms. Thanks!
Barb
USA - Tuesday, February 23, 1999 at 18:05:45 (PST)

I'd like to begin by saying my thoughts and prayers go out to those of you with TN. Two people very close to me have it. It's a horrible, horrible stupid affliction that anyone should have to bear. My father-in-law suffered for years, finally had the nerve cut. He's doing great now. My best friends's aunt also has TN. She has had several procedures and tried all meds. Nothing works. She has been suffering like a dog for about 11 years. Knowing 2 people with this dreaded disease, and being so familiar with it, it could never happen to me......Feb.of 98 I woke up and the right side of my face, nose, tongue, teeth and gums were numb. Beign 36 and always healthy I ignored it.Two weeks later, I went to the doc and was treated for sinus infection. Two weeks later, no better I went to ENT doc. Sinuses are great. The numbness got worse, not a dead numb, a feeling numb like my face is jumping across the street. By mid March the pains started coming, small at first. Went to a Neurologist. I was diagnosed with Trigeminal Sensory Neuropathy. It's different than TN because fo the numbness. Between March and June I was on Neurontin, Tegritol, Elavil, Tylenol 3, Demerol, maybe others I don't remember. Every day the pain got worse and worse.(I don't have to tell you about pain). It got into my ear and down my throat. Unlike TN in between lightning pains, the other pain in ear, throat and mouth was constant. The pain would knock me to the ground. I could only eat cantaloupe, watermelon, and ice cream, at room temperature for weeks. In desperation I went to a chiropractor referred to me by friends. After about 6 visits I was off all meds. I have some pain. What I do have all the time is the numb burning vibrating feelings inside my cheek, tongue, lips. Also my nose feels like it's stuffed with cotton. and my tongue and throat feel as though I am licking sand. He says that's another branch of the trigeminal nerve. This may sound kind of stupid but even kissing is kind of gone. I'm 37 I like kissing.The doc says TSN is very rare. I have found very little info on it (tons on TN). He also says the nrve may or may not regenerate itself over a period of years to not at all. I think that they don't have a clue. I'm telling you my story because I'm just another person who understands what you are going through and I am hoping someone out there knows(I don't want to say has) some way somehow about my condition or just that I am not alone. After you've tried all the meds, before the procedures, seek other alternatives..Chripractor, Accupuncture,Accupressure. There are other ways that work. Just make sure they are reputable. Good luck and thank you for your time. Lori
Lori <lyann309@aol.com>
Langhorne, PA USA - Tuesday, February 23, 1999 at 03:38:15 (PST)

I was diagnosed with TN last October, a month after undergoing an angioplasty. I have had what I thought was sinus problems for the last two and a half years, but now am not so sure. I have TN in the second region on the left side of my face. I have constantant soreness in the root of an upper tooth, and thought it was a cracked root, but after reading all your stories I'm not so sure that the tooth is really the problem. The root is sore regardless of the occurrence of TN pain. I am taking tegretol but recently reduced the amount from 600mg daily to 300mg. I'm trying to get an MVD operation scheduled, but the neurosurgeon says he doesn't like to do that unless the pain is no longer controllable by medication. But then he goes on to say that the pain WILL BE UNCONTROLLABLE after one to two years, so why doesn't he schedule me for the operation? I've heard very good things about the results of an MVD procedure and am anxious to have it done.
Frank Badder <mrspappy@codenet.net>
Colorado Springs, CO USA - Monday, February 22, 1999 at 16:42:48 (PST)

I have had TN for almost 9 yrs. Iam currently taking Amitriptylin(I think that's how it's spelled) I am on a very high dose of it and it has become very addictive. The TN is much less severe, but I would rather not take a handful of pills every day. I have also been diagnosed with MS, pseudo-tumor cerebrei, Epstein-Barr Syndrome, and migraine headaches. I am only 32yrs old and feel much beyond my years. My husband and I have 5 children,and I can't physically, keep up with. Reading stories at this site has already made me feel better, just to know someone with my same problems. No one can really comprehend it unless they've felt it. Thanks for letting me go on!
Joanie <wrpowers@wctc.net>
Wisconsin Rapids, WI USA - Monday, February 22, 1999 at 07:49:17 (PST)

Lori, hope you are having a good day. Our love to all of you. Are you still on Tegretol? It is just so amazing to be able to view the many problems people are having. Mary has burning, numbness and after three surgeries it is hard to believe anything can work. Anyone else out there having allergic reactions to some of the medicines being prescribed. God bless all of you hope you have a good weekend.
pat <joepategan@earthlink.net>
san diego, USA - Friday, February 19, 1999 at 19:18:04 (PST)

I have had trigeminal neuralgia for 3 years and I have had 4 teeth pulled due to this problem, before they diagnosed me. Just looking for someone else who has the same problem to talk to.
Nancy Gibbs <gibbsnancy@aol.com>
USA - Friday, February 19, 1999 at 17:12:59 (PST)

Hi Mrs Egan. I hope everyone is well. I finally took the time to write about my condition and aol has a habit of disconnecting you for no reason. Anyone out there, its called Trigeminal Sensory Neuropathy. Same nerve different disease. I'll explain my story later when I have the time.Anyone reading this today, I hope you are having a good day.
Lori <lyann309@aol.com>
Langhorne, PA USA - Friday, February 19, 1999 at 07:03:23 (PST)

My husband has suffered from Trigeminal Neuralgia since 1993 and it has increasingly gotten worse over the years. He has taken all of the known medications available and is now recovering from a very severe allergic reaction to Tegretol. He is going to the University of Pittsbutgh Medical Center on 2/23/99 to see Dr, Peter J. Jannetta and have the Microvascular Decompression procedure done. We are wondering if there is anyone out there that might give us any reason he should not have this done. He has suffered with this pain for so long that he is willing to try anything, if it will help. Thank you in advance for any information you might give us. Please e-mail RCoontz234@AOL.Com
Ruth Coontz <RCoontz234@AOL.Com>
Belington, WV USA - Tuesday, February 16, 1999 at 16:20:49 (PST)

Hi, to Lori, hope you are finding some info on this site. I am going to tell Mary about Lamictal. It is really a learning experience to read all the data on this page. I pray for all of you daily. Hopefully we will find an answer.
pat <joepategan@earthlink.com>
san diego , USA - Monday, February 15, 1999 at 14:56:19 (PST)

My father has been diagnosed with Trigeminal Neuralgia and is having quite a bit of trouble at this time. I was trying to find any information on it that I could.
Bobbi Atkinson <atkinsonbc@itlnet.net or batkinson@transok.com>
Elk City, OK USA - Thursday, February 11, 1999 at 13:18:17 (PST)

I'm interested in hearing from anyone who has had the alcohol treatment. My mother has been suffering for so long and finally after baclafin(?)and neurontin she wants the alcohol treatment. I would appreciate anyone who has had this treatment and if it works. Thanks
carol larkin <clarkin@afgnet.com>
Boston, MA USA - Monday, February 08, 1999 at 09:33:34 (PST)

I have been suffrering with TN for about 6 years. At first I thought it was sinus problems and so did some local doctor who prescribed antibiotics which caused there own infections to fight because I did not have one of my own. My wife then talked me into seeing a real doctor who when hearing all of the symptoms became excited about discovering something he had only read about. he refered me to neurophysician who refered me to a neurosurgen who recommended medication instead of risky surgery. I am currently on 800mg of tegretol and 4 doses per day of rivotril. It helps eventualy . I can only thank my wife and family for there support in dealing with the pain because I suppose it upsets them to see but not feel the pain. I would like to close by sending my best wishes to each and every one of you ,good luck and bye for now
Kevin Brew <kbrew@eisa.net.au>
Melbourne, VIC Australia - Sunday, February 07, 1999 at 01:44:34 (PST)

Ihave been suffrering with TN for about 6 years. At first I thought it was sinus problems and so did some local doctor who prescribed antibiotics which caused there own infections to fight because I did not have one of my own. My wife then talked me into seeing a real doctor who when hearing all of the symptoms became excited about discovering something he had only read about. he refered me to neurophysician who refered me to a neurosurgen who recommended medication instead of risky surgery. I am currently on 800mg of tegretol and 4 doses per day of rivotril. It helps eventualy . I can only thank my wife and family for there support in dealing with the pain because I suppose it upsets them to see but not feel the pain. I would like to close by sending my best wishes to each and every one of you ,good luck and bye for now
Kevin Brew <kbrew@eisa.net.au>
Melbourne, VIC Australia - Sunday, February 07, 1999 at 01:41:32 (PST)

Ihave been suffrering with TN for about 6 years. At first I thought it was sinus problems and so did some local doctor whoprescribed antibiotics which caused there own infections to fight because I did not have one of my own. My wife then talked me into seeing a real doctor who when hearing all of the symptoms became excited about discovering something he had only read about. he refered me to neurophysician who refered me to a neurosurgen who recommended medication instead of risky surgery. I am currently on 800mg of tegretol and 4 doses per day of rivotril. It helps eventualy . I can only thank my wife and family for there support in dealing with the pain because I suppose it upsets them to see but not feel the pain. I would like to close by sending my best wishes to each and every one of you ,good luck and bye for now. kbrew@eisa.net.au
Kevin Brew <kbrew@eisa.net.au>
Melbourne, VIC Australia - Sunday, February 07, 1999 at 01:34:45 (PST)

I just found out I have TN,we found mine early thank god,I hated not knowing the cause of my pain. If its on the left side of my head and face it hurts! I cried when I read all of youre stories,Im sorry for us all. I have done the dentist,and many doctors also, it was very frustrating.This website is a blessing thank you!!
Dawn <dawno_j@yahoo.com>
O.K. USA - Wednesday, February 03, 1999 at 17:20:11 (PST)

I was recently diagnosed with Glossopharangeal Neuralgia. You name a type of doctor and I'm sure I have been there. My neurologist wants to start me on tegretal but I have heard so many bad things about it that I am very nervous about taking this drug. I have decided to try acupuncture for a little while to see if I can get any relief without the meds. I have had one treatment so far and my 2nd is tomorrow. The experience was quite painful. I didn't think acupuncture was suppose to hurt. But I will endure it if it helps. If anyone out there has tried this approach I would love to hear from you.
Tina Petrakis <tpatrak1@tampabay.rr.com>
USA - Monday, February 01, 1999 at 10:59:41 (PST)

test
Mike
USA - Monday, February 01, 1999 at 09:06:49 (PST)

After 5+ years with TN, I have had nearly a year with no pain, due to Lamictal. I have tried all of the medications others have mentioned, but this is the first long-term relief I have had since March, 1993. I have had absolutely no side effects-I can even stay awake during the day!
phyllis
memphis, tn USA - Friday, January 29, 1999 at 22:33:14 (PST)

TESTING GUESTBOOK
Lori <LYANN309@AOL.COM>
PHILA, PA USA - Friday, January 29, 1999 at 15:24:14 (PST)

Hi Bobbe Dina in Las Vegas. I've tried to send e-mail, but it's not going through, I hope you see this and please send me e-mail again so that I may get your address correct. I definitely want to share my experience with T.N. with you. Thanks, Pam
Pamela Cato <P_cato@wfec.com>
OK USA - Monday, January 25, 1999 at 13:30:24 (PST)

Thank-you so much for this site Deb and everyone telling your story. I sure can relate. I to thought I was going nuts with TN which I have had about 7 or 8 years now but finally trying to find what meds work for me in the last year when I finally found a Doc that said I wasnt nuts. It started out like an earache then I thought it was my jaw. Yes I too went to ENT Denist even spent 300 for the mouth piece for TMJ didnt work finaly. I have been on 3 meds like everyone else and this last one Tegreol has awful side effects I cant take. I just stopped it yesterday its only been 4 days but when I think Im going to crash with my children in the car cause Im so dizzie forget it. I have consent pain on the right side of my face feels like its right behind the ear sometimes the whole side of my face. It neverrrrr stops sometimes it hurts really bad. The only time it gives me a break is when I sleep. I have taken pain pills and they help but being a recoveing alcoholic of 14 years and my husband reminding my Doc I shouldnt take them he wont prescibe them now and I dont need another addiction. What else can I take for some releaf thats not narcotic??? If anyone knows please tell me! Yes I take tyenol all day. I hate this.. Im thinking of of the Decompression I did buy the cream just yesterday Capsaicin and will try this. Well thanks for reading my story and its great that we can try to share the different ways we would all like to get better. Im so glad to read postive things that are working. Oh and yes I have had the x-rays mri catsan too. Thanks again all.
Cheri <cherit52@aol.com>
coral springs, fla USA - Monday, January 25, 1999 at 06:12:17 (PST)

I have been in varying degrees of pain since Feb.98. In December I finally received the diagnosis of TN. I went to a chiropracter who recognized my symptons and referred me to a wonderful neurologist. It was so terrific to be setting in front of a doctor who said everything I was telling him made perfect sense. Every other doctor I had seen looked at my like I was insane because I had such a wide variety of complaints-stabbing pain along the left side of my nose, a twisting, tight feeling in my scalp, throbbing pain around my eye and electric running along my outer jaw and ear area. I was beginning to feel insane, as if this pain could not possible exist because no doctor could validate it. It is so helpful to read all these stories and hear from others that this pain is not imaginary. I'm sorry so many of you are sufferring too but I know it is so comforting to and educational to share our experiences. In the last few weeks my pain has been very intense-I am frequently unable to concentrate at work, I'm sleeping propped up the couch so I don't have lay my face on a pillow. I am trying to remain optimistic but it is quite discouraging some days and I feel it is wearing me down. My neurologist has told me to stay hopeful because there are so many things we haven't tried yet. I am currently taking 2400 mg of Neurontin daily but have not noticed any improvement. The pain is so unpredictable-gone for awhile (I relish every painfree day!!!!!!!!!) and then boom-there it is and your whole world just falls apart. So how do you know when something is working???-Did the pain just disappear or is something actually working? One very positive thing is my neurologist has asked me to allow a class he teaches (about 40 doctors) set in on our next appointment so they can be more aware of TN and hopefully make a quick diagnosis. If they correctly diagnosis only one person who otherwise may have sufferred for months without hope I will be happy. I find this is really hard to explain to people so noone can really understand the degree of the pain-you are walking around looking healthy as can be, so it hard for people to imagine the disabling pain. I have been using Zostrix cream for about 1 week and feel somewhat hopeful it helping a little-although the burning of the cream is extremely uncomfortable itself. I hope all you find the peace you need, whether in dealing with the pain or dealing with the curing of the pain. I really believe there is a cure out there for each and every one of us-it will just be a different cure or combination of cures!! Keep searching for yours-and keep writing. Thank you for this site-it has been a life saver.
kay <summitlouk.aol>
des moines, ia USA - Sunday, January 24, 1999 at 22:24:25 (PST)

To Sharon in England, I have had TN for five years and have been successfully treated in England recently. If I can help with advice or support I will. just email me at georgelec@msn.com
George <georgelec@msn.com>
Guernsey, UK - Sunday, January 24, 1999 at 12:36:01 (PST)

Thank heavens for this site, my father suffers TN in the 3rd region and is in excrutiating pain presently , he has been taken off tegretol and is now on garbapentine with kapak and we have added nurofen as voltorol injection at the hospital emergency worked. he see's the consultant on wednesday 27.1.99 for second time he is recommending glycerol injection as my dad is 70yrs old with Left ventricular failure and bi lateral pleural thickening of the lungs due to asbestosis. As an ex nurse and mental health social worker i feel totally useless in helping his pain. Ihave never seen my dad cry and scream or any other human being suffer so terribly as this awful affliction which depresses individuals who are normally outgoing and live active lives in to isolated individuals who are afraid to bump into friends because they cannot speak for the pain. Thank you everyone for sharing your experiences, my dad will read these and hopefully i will of helped him feel a litle less isolated.
Sharon
England - Saturday, January 23, 1999 at 16:58:12 (PST)

I HAD MY FIRST ATTACK IN THE SPRING OF 1996. I TOOK 18 MONTHS TO GET ANYONE TO LISTEN TO ME MY PCP FINALLY REFERRED ME TO A NEUROLOGIST I FAILED THE TEGRETOL/DILANTIN APPROACH SINCE I WORK AT ONE OF THE LARGEST HOSPITALS IN THE USA I BEGAN DOING SOME READING IN OUR MEDICAL LIBRARY AND FOUND OUT ABOUT GAMMA KNIFE RADIOSURGERY. WE HAVE A GAMMA KNIFE FACILITY HERE AT METHODIST HOSPITAL IN MEMPHIS TN. I HAD MY SURGERY 11/4/97. IT HAS TAKEN TIME, BUT I HAVE GOTTEN TREMENDOUS RELIEF FROM MY TN I HAVE OCCASIONAL ATTACKS BUT THEY ARE NOT AS SEVERE AND DO NOT LAST AS LONG I WOULD RECOMMEND THIS TREATMENT TO ANYONE. IT'S DONE ON AN OUT-PATIENT BASIS, AND MOST INSURANCE COMPANIES WILL COVER IT. IF YOU ARE INTERESTED IN MORE INFORMATION WRITE TO THE MEMPHIS REGIONAL GAMMA KNIFE CENTER DAVID CUNNINGHAM MD, MEDICAL DIRECTOR 220 S CLAYBROOK MEMPHIS TN 38104
M REECE
USA - Friday, January 22, 1999 at 13:58:20 (PST)

I'm interested in info regarding acupuncture in the treatment on TN. I have been on tegretol and unable to tolerate the side effect, nerotin with no results and as of last night,dilantin. At this point, I am willing to do ANYTHING to relieve my pain. If anyone has any information PLEASE contact me.
Lili <mama10@aol.com>
St. Louis, USA - Friday, January 22, 1999 at 08:39:22 (PST)

To Nancy who just posted on glossophyngeal neuralgia. Would like to e-mail you but you posted the wrong address. If you would like to chat about GPN, can you post the correct e-mail address. Thanks, Margaret
Margaret
USA - Friday, January 22, 1999 at 07:30:42 (PST)

Just an update. I am now in my sixth pain-free month, thanks to CAPSAICIN cream. I am still applying it regularly and I haven't had a twinge of pain. I am taking no other drugs, and have had no surgeries. I encourage everyone to try it! It may work for you. It's inexpensive, available at your local drug store without a prescription. I use the .05% strength. Cheers, everyone.
Barbara Martin <thabar@hotmail.com>
London, ON Canada - Wednesday, January 20, 1999 at 16:39:53 (PST)

Hi! My name is Nancy. I am 44 years old, and was so thankful to find this site and information.I have never been on the web before, but I thank God that I found this. I did feel like I was all alone with this pain that I have had for 10 years, with no help or relief. After seeing every kind of Dr., I was told I had Glossopharangeal Neuralgia. I had MVD surgery Nov.23rd of 98. No relief what-so-ever. They are now talking about putting in a morphine pump in my brain artery. I am not sure of this. I would like any information that anyone might have on this, or has had this procedure done. I am more leary of this than I was the surgery. Please respond.
Nancy <www.SGFly@aol.com>
USA - Wednesday, January 20, 1999 at 09:10:31 (PST)

I HAVE HAD TN SINCE 1976 AND WAS NOT DIAGNOSED UNTIL 1986. I HAD SURGERY TO ZAP THE NERVE AND IT RETURNED TWO YEARS LATER IT RETURNED. SINCE THEN I HAVE BEEN TAKING TEGRETOL AND IT WORKS. BUT I HAVE TO TAKE IT WHEN THE IT FIRST STARTS AND IT WILL STOP UNIL THE NEXT TIME IT COMES UP. MY SEEMS TO START WITH THE CHANGE FROM WARM TO COLD WEATHER. THE PAIN I HAD BEFORE I WAS DIAGNOSED WITH TN WAS SEVERE I WOULD DO ANYTHING TO HELP PEOPLE WHO ARE NOT AWARE OF WHAT IT IS AND AND HOW TO STOP IT.
ROBERT AUCOIN <ROBERT ACUOIN@ENRON.COM>
HOUSTON, TX USA - Tuesday, January 19, 1999 at 07:54:38 (PST)

Was diagnosed with TN in May, 1997 and took several different medications including Tegretol and Neurontin. None of them completely alleviated the pain. Had MV Decompression surgery in August of 97 and have been pain free since. I have been having a lot of headaches and ringing in my ears, also dizziness. Thought it was inner ear trouble. Has anyone else had these symptoms after TN? I would like to know if it could be related.
Wanda Pilcher <Wickedwjp@aol.com>
Gladewater, Tx. USA - Monday, January 18, 1999 at 18:21:23 (PST)

I have had headaches for 30 years. Until 8 years ago I took multiple over-the-counter medications. The first doctor I went to said it was sinus problems. I was on many different medications including steroids, antibiotics, antihistamines, inhalers, pain medications, & nothing helped. Several CT Scans on the head & sinuses were negative. The pain is unbearable. It effects the entire right side of my face, neck & right side of head including my teeth, ear. I also get muscle spasms in my face & neck & numbness in the right arm to my finger tips. It hurts worse to lie down. When the doctor determined it was not sinuses, I was sent to a neurologist who do not even listen to my symptoms. As soon as she found out that my father & sister had migraines, that became my diagnosis & she prescribed Inderol. That didn't help either. I was finally sent to a group of neuro-surgeons in Pittsburgh 3 years ago who made the diagnosis of TN. He wanted me to try other options before surgery. I was on 1200 mgm Tegretol a day with no relief. I was then sent to the pain management clinic. I received multiple nerve block injections in both my face & neck with only temporary relief. I went to a Chiropractic with some relief in the pain, but developed bad muscle spasms in my neck and shoulders and then the pain returned to daily. I then was sent for physical therapy, This relieved the muscle spasms & my TN was only acting up about 2 days a week. But then PT was finished. Within 2 weeks the pain was back to every day. It even hurts to chew food and laugh. Right now as I amy typing this the pain is real bad especially in my face. No prescribed pain medications have helped. I am thinking seriously about having the surgery done, but I guess I am afraid.
Elaine Kephart <ekephart@penn.com>
Curwensville, PA USA - Sunday, January 17, 1999 at 15:23:47 (PST)

I was recently diagnosed with Trigeminal Neuralgia and I also have TMJ which was confirmed by an MRI. Indeed it is painful, I have had tooth extractions, root canals and now have periordic numbness and eye problems. This is all on the left side of my face. I am now taking tegratol and am encouraged that others share the same problem - at times I felt I must be the only one with this intense pain which I try to ignore but it is not possible. Thank you for your web site, it is very important.
Carolyn Kyle
USA - Friday, January 15, 1999 at 20:09:58 (PST)

I have has T.N for the last 2 years. I have never experienced anything that was more painful. A little history on this problem. In a mater of a few months I had laryngitis followed by deafness in right ear caused by sinus. Followed by a case of the shingles on the left side. While I had shingles, I developed T.N on the right side of my face. I was then put on Tegretol, which I was allergic to. I broke out with a case of the hives and my air passage was closing down. I was then give a counter to Tegretol tostop the hives. By then the T.N. was getting unbareable. Somthing had to be done. I was sent to a neuralsurgeon in Cedar Rapids (Dr. Aberthnaty) in which he preformed M.V.D ( Microvascalur Decompression). This lasted 3 months. I put up with this pain for 6 months and then went back the djoctor. We discussed having Glycerol Injection at Mayo Clinic in Rochester Mn. This procedure was done Jan. 13,1999. Knowing this is a temporary procedure we are checking into Gamma Knife or Dividing the Nerve. This to will be done at Mayo. I would like to know more about these last 2 procedures. Has anyone heard of the drug Ketamine in the treatment of T.N. I hope that someday there will be a cure for this dreaded disease. Good luck to all that have this problem.
Myrna Slack <jmslack@muscanet.com>
Muscatine, Iowa USA - Friday, January 15, 1999 at 13:22:07 (PST)

Nice site on AA. I knew a friend who was addicted to sleeping pills (over 1 year) he took herbal medicine (SCULCAP for nervous disorders and addictions) and got off of it. For those who are christians, I had a addiction of some sort and the long 15minute rosary prayer I recited and continue to recite everday somehow after reciting it for a couple weeks I got partial then after 3 weeks got full control of not doing it anymore. I have a website devoted to it anyone wants to check it out print it out give it a try, it does work miracles. Keep up the good work, I know there is more than one way of treatment of addiction never give up, try something else til it works.

Jimmy <prayrosary@yahoo.com>
Toronto, ON Canada - Thursday, January 14, 1999 at 23:21:50 (PST)

I have had Trigeminal Neuralgia for ten years. I am 33 years old. I would love to hear from other sufferers.
julie <paul.julie@tesco.net>
USA - Wednesday, January 13, 1999 at 15:13:16 (PST)

I was diagnosed with TN 18 years ago at the age of 30. To all of you who are suffering or who have suffered from the unbearable pain of this disease YOU ARE NOT ALONE. Over the years I've taken just about every medication there is to control the pain. Finally, in 1994 the pain was not controlled by any medication. I had to make a very hard decision to have a Trigeminal Rhazotomy or be incapacitated. The pain was so bad that I stayed in bed for two weeks hoping and praying the pain would subside, but it didn't. My life with my husband and 2 daughters wasn't the same and had been really tough over the years when I would have bouts with TN. My Doctor told me some of the side effects would be and I decided anything would be better than living with this horrible pain. On March 10, 1994 I had the Trigeminal Rhazotomy. When awoke I thought I had made the wrong decision. The right side of my face is numb, my right eye doesn't tear anymore. At first I thought this was even worse and it felt so different I thought everyone would be stareing at me. After a couple of weeks I realized I could live with the numbness, put artificial tears in my eye and most of all be without the pain. My face nor my eye is visibley crippled and the numbness feels like I've had a big shot from the dentist. When I think about it, there are so many other different kinds of pain that people live with and nothing can be done to relieve it. I am just so thankful that I did go ahead and have this procedure done. Sometime it is annoying to me, but no one else even notices. Most of all, I have learned to live with it and I thank God that I am pain free. I would love to hear from any of you who are suffering or who have suffered with this most dreadful condition. I've enjoyed reading all of the many different experiences with TN.
Pam Cato <P_Cato@WFEC.COM>
OK USA - Thursday, January 07, 1999 at 09:48:26 (PST)

I have been suffering 2 years now with pain on the right side of my throat and in my right ear. I was first diagnosed with elongated styloids and underwent surgery to have my tonils removed and the right styloid cut back. Within weeks the pain returned. It seems to have gotten worse. I have had a CT scan and MRI and both come up normal. I don't feel normal though. My ENT feels that it has now developed into Glossopharyngeal Neuralgia. I am taking pain medicine daily to help. I will be seeing either a nurologist or a pain management specialist within the next few days. I do not know a lot about this condition yet except the pain that is associated with it. I would love to hear from anyone out there who suffers from this. I would like to find out what treatments are available. I am a female 36 years of age.
Tina Petrakis <tpatrak1@tampabay.rr.com>
USA - Wednesday, January 06, 1999 at 07:31:45 (PST)

Thanks for the site, what great and rare info! I was diagnosed with TN in July 1993 (at age 35) after a root canal provided no pain relief. I am currently receiving alcohol injections approximately each six months (the last time was eight months) and am taking 400mg teg a day. The alcohol injections are fairly painful themselves, but only for a brief moment. TN pain is controlled! I became seriously interested in a surgical solution after the most recent AI, the injection site ulcerate