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TRUE STORIES Please note that treatments vary greatly depending on the individual. Do not base your treatment decisions solely on the personal stories you read here. Please keep in mind that the following comments do not represent a scientifically adequate cross-section of patients . Information here may be skewed and faulty, but on the other hand it is the closest thing at the moment to "the voice of the people"....As you read these stories, you might want to contact someone who has asked to remain anonymous or has requested their email address to be private. Please send an email to editors@facial-neuralgia.org describing the person you want to contact. If we have an email address for that person, we will forward your name and email address and let them know you would like to make contact. Name: Brian Henderson I have had AD for since 1988. I have not been able to find any meds that relieve the intense numbness and tingling sensations. The entire right side of my face has been affected. I have no pain, but I would really like to find something that would lessen the numbness. Does anyone have this same problem and if so, what have you done to get relief. I welcome any replys. Name: Denise I'm still seeing my doctor and have already seen the dentist this is like a wild goose chase. I am now trying biaxin and claritin d to rule out sinuses and have had an x-ray of my sinuses. The pain is so sharp it starts at my nose and pierces to my head. Does this sound familiarto anyone? I can't eat right talk right or touch my face in any way. I go back to the doctor in twelve days then I go for a cat scan. He said this face pain could be trigeminal neuralgia what a scary term. I don't know how it starated I just know I am under alot of stress does this make it worsse? Please try to help me I'm disgusted about right now . Name: Amy I was diagnosed with Trigeminal Neuralgia about 3 months ago, I am a 23 year old female. The pain started in April of 2001 and after seeing 2 dentists, an endodontist, and 2 neurologists, I have a name for this pain. It seemed to start for no aparent reason, and since I had a root canal done the year before, I simply thought it was that gone bad. They did every tooth test possible and determined it was not in my teeth, and suggested I see a neurologist. So I did, and he did all kinds of pin, eye, reflex, etc tests, ordered an MRI to rule out tumors and devided it was "facial" neuralgia and gave me tegretol. This seemed to kick the pain but low and behold, about a month into the medication, I broke out in a miserable full body rash....in the heat of the summer. Needless to say I had to give up the tegretol and I moved on to Dilantin. I do not recommend this for anyone, it was like taking candy. It did nothing for me, and it also threw off my birth control pills as if I wasnt even taking them, so I had to switch those to a stronger pill, and eventually stopped the dilantin due to a horrible trip to the ER. The pain was so bad I was up all night vommiting and nearly tearing my hair out because of the pain. The ER gave me an IV of some kind of pain medicine, which was not nearly strong enough to kick this pain. I was there for about 6-8 hours and was released with a Rx for Darvocet and a slip to see a neurologist. I have tried Vicatin, Darvocet, and Perkocet...nothing helped. They only made me tired, and the pain was too bad to sleep. So this second neurologist that I saw was EXCELLENT. He saw me quckly and started me on Neurontin which doesnt effect my BC pill and seems to be the best choice so far. Although I still have pain every now and then, it is bearable. This doctor is located at Ruby Hospital in Morgantown, WV at West Virginia University. I hope this story helps someone or at least gives someone hope of relief. Feel free to contact me anytime. Name: Ray In Army a long ago ,had upper right wisdom tooth was swollen and in pain went thu my training and got station over seas perment .So I go to Dentist he looked to be a few years older than me (18)after the 3rd shoot it was still to painful so 2 more and I could feel nothing but my left ear as he dug and pulled,and know joke half way in the chair with me ,he findly said I got no follow up no nothing and at 18 I still should have at lest try to get someone else to check it out.Cause that even are next day I could hold nose tight and blow and air would hit my tonge.That is the Gods turth.Every sence then even to I cannot breath threw my nose.But guess what I was in a explosion and for 10 years the VA cannot find my medical records (Loss) for a claim I have and need those records.Is it a way a cat or MRI can show this happen like with scare tissue are some other way. Thank and e-mail me please if someone knows more about this are has had it happen to them Ray2Vet@aol.com Name: clarence Hello, I have had postings here before. I have changed e-mails for anybody who has tried to reach me. I still have great success with nerve blocks. And willing to share my information. Get in touch at my new adress pastperformerca@hotmail.com. Like to hear from my old contacts. Lost alll my e-mails when hard drive crashed. Name: Maria Diagnosed with Occitipal Nerve Headaches sometime in August of 2001. After an unnerving bout of vertigo - headache lasted for 8 weeks. Had first nerve block - ouch!! Second nerve block was even worse than the first - ouchhhhhhhh!!! I am doing all I can not to have a third one. Have survived on Darvocet which does nothing for me and also have tried oral steroids which also do nothing. Mostly, I guess I just grin and bear it. I feel sorry for anyone who has to go through having the occipital nerve block on a weekly basis. I just believe my TN made me tougher and more willing to try to ignore the pain but you will always wonder if maybe there is something more than you know wrong with you........... Occipital nerve headaches are awful. God Bless Us Suffers and give us the strength to cope with everyday life....... Name: Maria I was diagnosed with Atypical TN in October 2000 after 6 months of continuous facial pain at the age of 33. My internist was 99% sure that was what I had so he sent me to a Neurologist after my third visit to him. (It took me from March to September to convince myself it was something more than just a sinus problem.) Had MRI and Neuro. diagnosed Atypical TN. He put me on Tegretol chewables - 5 100mg tablets -- made me so sick - and Prozac. Prozac has helped me with anxiety of dealing with this disease. Neurologist finally changed my meds to Carbatrol extend tabs and nausea went away - Thank GOD!!! I have now increased my dosage of Neurotin and have slowly decreased the dosage of Carbatrol after a year of living in pain - a pain that never fully goes away. I was tired of not having a life and missing out on my children's lives. The pain is still there but feels different now - more like a hot, stinging numbness. That's liveable - at least as long as the 'lightning strikes' aren't happening. I have discovered I cannot do everything like I used to and that I have to listen to my body. Slowing down has been the hardest for me. I've had to give up a lot of my church activities and other various activities in the community. Pain has become my way of life - but it varies from day to day and sometimes minute by minute but I'll survive. God will not put on me anymore than I can bear. One day the pain will be gone and I will be so thankful!!! Not every person will have the same symptoms or the same reaction to this disease and doctors don't know everything. If you are not happy with the care you receive - find someone else who can help you. Research the disease and e-mail other people who have the same disease you do. Good luck to all of us...... Name: TONYA Today I went to see a neurosurgen who told me that I didn't have typical tn. Maybe it wasn't tn at all. I was diagnosed by my 2nd neurologist about 4 months ago. I don't have short episodes, they last for hours on end, almost daily. I reached the maximum dose of trileptal with ultram for break through pain. She began to back off the trileptal and start neurontin. I also take darvocet for break through pain now. At this present time I am at the absolute highest dosage of neurontin and still haven't stopped taking trileptal. She refered me to the surgeon because there aren't any more meds to give. I'm 28 and fear what the rest of my life will be like, if there isn't anything they can do. My MRIs are normal so of course there CAN"T BE ANYTHING WRONG WITH ME!!!! The surgeon today actually asked me if I thought my sinuses might still be infected! Give me a break, I can't believe I going to have to pay this man. Does anyone else have pain on both sides? My left side pain started about 3 months after right side pain began. I started my meds shortly after left side began to hurt. I still have break through on that side, just not as strong. My pain triggers migrains, I wonder if anyone else has that same problem. It is so sad to know that there are so many doctors out there that treat this disease like a joke. Right now I just want to scream. No one should have to suffer like this, I wish they would take the time to understand. Name: Patty I'm looking more for help or someone to talk to than have a story to tell. I have suffered facial pain for over 5 years on the left side of my face. Finally after many Dentists, ENT, and neurologists, I found a neurosurgeon at Northwestern in Chicago to help me. I hated taking the tegratol due to side effects and chose the MVD procedure last June. I was pain free until last week. What we thought would relieve me for years to come only lasted 6 months. I have a dull aching pain in my left ear eye and jaw at all times, followed buy a sharp pain that comes and goes with no warning. I have a wonderful husband and family but to someone who has not experienced the pain and horror of TN they just don't understand. I need someone to talk with so I know I am not crazy. I am 32 years old and have to small children to raise, which on many days is difficult. Most people just treat me as if I have a headache and that is just not the case. Thanks for the chance to talk, please email me if your outthere! Name: deborah callaghan My story, well where do you begin. I'm now just turned 36 and recovering from Micro Vasular Decompression. And after 5 years of on and off TN I am seeing light at the end of the tunnel. The last 12 months have now looking back been a total blare. Where do you find the words to describe this terrible disease,I sit here sometimes and wonder, still I find it very hard.I would love to hear from anyone iut thee that is a sufferer of TN Name: Name: margrit I'm 63 yrs old and started with TN approx. age 28. Had many tests, CT scans, etc. Went from ENT doctor, allergist, neurologist with no definite dx for approx 15 yrs. Had history of "fever blisters" when in sun or windy, cold weather. Had severe attack of fever blister, pain in left side of face and went to dermatologist. He told me to take L-Lysine which helped after a few days - relieved the pain and fever blister cleared up. Since then (for about 20 yrs I take L-Lysine at the beginning of each November because this is my worst time of year (Nov to March) - Have had teeth removed (molars) - lost 3 last year and realize that most of the medications don't help. I try to stay calm because stress, sun, cold wind and also, especially, TALKING ON THE PHONE aggravate problem. Started with my 2001 attack 3 days ago and hope that this year won't be too bad, however, this time I'm having trouble with my balance (walking gingerly). Funny, but 5 days ago I mentioned to a co-worker that I had no headache for two days straight - I felt very relaxed and full of energy and then WHAM, the ear pain, teeth pain, head pain, eye pain all started. Sort of the calm before the storm, I guess. If it only lasts a few months, I'll just take Lysine - if it gets worse I'll consider surgery. Hang in there everyone because in view of the fact I've had this for a very long time (over 30 yrs) I've lead a reasonably good life - just wish I could have those first 10 years back so that I could have enjoyed raising my daughter instead of spending a lot of time in a dark, quiet bedroom because doctors had no idea what was wrong with me. As usual, they said it was my nerves - the old cop-out when doctors can't figure out what's wrong with you. I've held full time job for over 40 yrs in spite of the pain, vertigo, etc so I guess it could be worse. Just have to know when to back off and take care of yourself (rest, etc.) if this is what helps. Name: DANA HI MY NAME IS DANA I AM A 31 YEAR OLD FEMALE WITH A HUSBAND AND TWO CHILDREN. I HAVE BEEN DIAGNOSED WITH TRIGEMINAL NEURALGIA ABOUT NINE MONTHS AGO. I I HAVE BEEN IN SO MUCH PAIN AND SOMETIMES I FEEL LIKE I AM GOING CRAZY. IT SEEMS LIKE I CANT GET THE RIGHT DOCTOR I HAVE BEEN THROUGH TWO NEUROLIGST DOCTORS AND I AM STILL SUFERING. IT SEEMS LIKE ALL THEY WANT TO DO IS UP THE DOSAGE OF MY MEDS. THE STATE I LIVE IN WE HAVE NO NEURALGIA SPECIALIST. IF ANY ONE KNOWS WHERE THEY THINK I CAN GET SOME HELP PLEASE LET ME KNOW. I DONT KNOW IF SURGERY IS THE RIGHT WAY OR NOT. AND I WAS WONDERING IF THIS COULD CAUSE ME TO HAVE REALLY SEVER HEADACHS IHAVE BEEN HAVING BAD HEADACHS. PLEASE LET ME KNOW I FEEL SO HELPLESS. CAUSE ME TO HAVE TO GO TO THE EMERGENCIE Name: Joyce Pain on left side of face, temple and jaw. Seems to be responding to medication. Neurologist currently trying to determine if 8th cranial nerve has damage. Had MVD surgery on right side of face last January (5th & 7th nerve), and was very successful. Have had some hearing loss - experiencing vertigo and nausea on occasion. Had pain on left side before had surgery for hemifacial spasm on right side. Has anyone else had similar problems? Name: Zoe I had dental surgery 10 years ago. I recently had removed the tooth that had been saved. It was very badly abcessed and I was no longer able to control the pain, The extraction itself caused no pain but I had to return to have the site cleaned 3 days later as the pain had not decreased. As soon as I left the dentist I was in excruciating pain and have remained so on and off for the last three months. I saw a specialist that diagnosed it as being atypical facial pain but now believe it to be more consistent with atypical trigeminal neuralgia. I live in outback Queensland and our one local doctor refuses me any pain relief. Another doctor I saw in Brisbane insists it is an infection and has just prescribed an eighth course of anti biotics. Is thereanyone out there that can help me. I am in intolerable pain and quite despairing of my situation. Please help if you have any information that my help. I am 37 years old and would like some quality of life back. Oh, I am unable to find a neurologist that will treat me until next year. Help! Name: Rick T 3 years ago My bottom left molar nerve died so my dentist removed the nerve. a proceedure I have had before.However when he reamed out the nerve it became painfully obvious that the pain relief had not effected this nerve. AFter many doctors visits I have still got no answers until a family friend told me of neualgia so i looked online and I found this site. My symptons include; left side scalp irratation, pins and needles on left side of fAce, left jaw pain in behind jaw and down neck, sore throat. and left side head aches. I rarely go a day with out pain all day. I had the tooth removed to no avail Alcohol sets off pain in a few minutes I ve tried Imagren, Caramazepine no effect Voltaren works the best on me but I try not to take it every day. Name: Gina Dilipkumar I have been experiencing facial pain for 7 years now. Tegretol was helped me until last year. But this year it doesn't work at all. My neursurgeon suggested me to take Neurontin. It seems like not working at all, except it makes me very sleepy. I have to come work everyday so i stopped taking this tablet. This pain affects my work, and my everyday life. i try to get through but it's so hard. The hardest thing is i can't express my feelings to anyone. I cried too. One minute i am top of the world, the next minute the pain is on top of me.I almost lost to suicide so people need to realise how painful this condition can really be, we've lived ti and it is not an easy thing. I prey to god everyday , because i don't know where else to turn. Name: Jane Suffering with AFP for a little over 2 years. On 16 th doc (neurologist #5). Current treatment had me feeling better than I was 6 months ago. Was taken off the Ultram for fear of seizures. I was taking about 4-6 per day. Always 2 at a time because I realized I am immune to it somewhat. It still took the edge off the pain and allowed me to work and have a life. Now that I am off of it, I feel the same old pain coming on again. Just called the doc who will not refill the Ultram, but has me increasing the muscle relaxors a lot (z-z-z-z-z-) and inceasing the anti- inflammatory (oruvai) by 2x. I go to sleep lately with the ice bag. I remember what this pain is like when it gets really bad. I start to get nervous at the thought of this monster returning full force. I'm upset that we seemed to have it under control and now he changed the meds!!!! He can't see me for another month. I' ve had panic attacks in the past when the pain is high. He knows this, but won't prescribe anything else. I still work, and have to. I just bought a house and hope I can get through the moving process at the end of the month. Does anyone have any suggestions on other pain meds. (preferably no- narcotic) that have given any relief? Have done most of the otc ones + motrin 800 with no help. Thanks in advance.... Jane Name: Rennie I had an attack over a year ago. I thought I was going crazy. I called my dentist, and I knocked myself out that night with a friend's oxycontin. The next morning, my dentist took x rays, and he said nothing was wrong with my tooth. Incidentally, the pain was coming from a place where I had a bridge. I had had the tooth pulled several years ago, with a terrible root canal, then the bridge. I also had hurt my neck, bulging discs on the right side, which is exactly where my pain is. I had oral surgery, and the surgeon mentioned "neuralgia". I went home and looked in a medical book and diagnosed myself. I went to an idiot of a neurologist, who prescribed Tegretol and Elevil, but never told me what I had. I did not take the drugs, until my next few attacks. By then, I went to my primary care phsyician, who dx me with TN. I first tried the Tegretol, but it caused unusual bruising. However, it worked to control the pain. I was worried about my liver. Then we tried Dilantin,which did not work at all. All the time I was taking Dilaudid for the pain. I took the TNA newsletter to my neurologist, with the newest info about Trileptal. However, I began having very, very high blood pressure, tachachardia, and edema. He is worried. So am I. I go to my primary tomorrow for a blood pressure check. However, my friend also took Elavil, and it caused the high blood pressure and rapid heartrate too.So, I am titrating off the Elavil starting tonight, and hopefully the side effects will subside. I have to be careful when I brush my teeth, laugh, and get stressed. I am a licensed psychotherapist, and I work with foster kids, so it is hard not to get stressed out.I am taking 900 mg of Trileptal, TID. I would like to hear of others taking this drug. My bloodwork came back just fine, thank God. However, my neurologist is thinking I might be having side effect because I also take synthroid. I am really convinced that it is the elavil that is causing the 180/120 blood pressure. Pretty scary for a woman who works out five days a week, and eats well. Would really like to hear from someone who is currently taking Trileptal. Thanks alot for letting me vent. I feel so damn alone out here. Nobody knows about this thing. We definately need to educate dentists. Thanks, HRM1012 Name: Earl While in the military years ago, I went to dentist with a pain in the left jaw. One tooth was extracted. Needless to say the pain never stopped and other teeth were taken. The pain was so intense that I could not sleep or eat. I lost alot of weight & became very depressed. I spent many long painful hours by myself. The military dentist never understood and thought me insane. Suddenly the pain stopped and I continued on with my military carrer. I was stationed in California and the pain started again. I went to the base medical facility and they gave me a few pain pills and sent me away. When I returned with the pain, I was scolded and dentist & doctors treated me as if I were insane again. Even though the pain was sometime beyond my tolerance, I never returned for treatment. I will never forget those hours that I cried in the dark and the days that I could not sleep or ear. Finally the pain subsided enough that I could survive, but somehow I felt different and kept to myself. My biggest fear was that the pain would return. I continued to remember the sleepless nights and the times that I wanted to eat and could not. I use to watch people joyfully chew their food and wish I cound do that. Well off to Vietnam I went. After about 6 months the pain started in the left side of the face. They sent me to a dentist. He was most frustrated and would glare at me in the dental chair. I was ridiculed by others. Why was I in the hospital? I was not wounded. Surely, I just wanted to go home or must be crazy. Finally, I got our of the hospital...I still had a lot of pain. The doctors refused to give me any pain medication and let me lay in the ward. F I went back to work only to have the pain return. They decided to send me back to the states. Before leaving, one of the doctors came by my bed and said, "I guess you are satified, You are going home?" I was devastated. They flew me back to a Hospital in Texas. To my horror, I was placed under the care of a dentist. He leveled my teeth and took bite imprints while I suffered in pain. Most of the nurses thought that I was crazy. They gave me liquid food because it was too painful to chew. I tried to explain that even to drink was painful. A dentist decided to give me an injection into the left side of the face...right in the joint. I never screamed so much in my entire life. Next day, the nurse handed me a mirror. The jaw and face had dropped, I looked like something from a horror movie. Sometimes later they had me push my bed over to Neuosurgey and I finally spoke to a doctor who knew what was wrong. They had no idea whether the face would be right again and were about to discharge me. I had serve in the military for 15 years. This doctor finally gave me what I needed an anticonvulsant. In four days the pain was gone. I could eat a hamburger in pulic. I Finally had surgery a RadioFrequency. It took care of most of the pain. My face and eyes burn and I am pain free on the left side other that burning in the center of the face and eyes. Needless to say...the freedom from pain was short lived. I now have pain in the right side of the face with burning in the eyes and left forehead. I am taking Carbamazepine 100 mg 4 time aday with little results. I have lost my job, can't sleep again. It is the same pain like I had in the left side of my face. I had the pain in the left side of my face for 5-6 years before surgery. I have had the pain in the left side for two years. I did retire from the military. I survive because of the pension. Will it never end!
Name: phil Just a short. Line Well after finding this web page I finally knew that I was human, and not an alien from outer space, (well that’s what about 9 doctors thought) im the lucky one iv’had this for about 18 mths now, and reading some of the sites about TN can be scary. My pain only happens when pressure is applied to my forehead and the lightning pian goes down the side of my neack, even the pillow hurts. And the towel and the wind and the brushing of hair all the things we take for granted are soon taken away from us by a stupid thing called TN and replaced these things with pian (not fare is it people)???????Well I saw a neurologist a few weeks ago and im going for a MRI this Friday hope they find some thing but on the other hand I hope they don’t………. Well sorry to bore you with my little story. But yes im a chicken. GOOD SITE PEOPLE KEEP IT UP And sympathy for every one with this shit of life. PHIL (the chicken)
Name: Bernadine I suffer from Trigeminal Neuralgia and glossopharyngeal Neuralgia. This happened after a car accient two years ago. Right from the word go I tried to tell Doctors what was happening to me I had excruciating pain on the right side of my head and I would get these stabbing pain as if someone was putting a knife into your head and face and neck and just kept stabbing. the pain holts me in my step where I can't move if I try to step I jsut get the stabbing so I try not to move , my right eye waters when this happens, I get a chocking affect and I lose my voice sometime for just a little while and sometimes it can be gone all day. The pain in my right eye really hurts and my eye begins to close , I'm not very good with anything that is too chewy as I start to schock and lose my voice and it triggers the pain in my neck and behind my ear. I went to different doctors and was told that the things that where happening to me just couln't happen. I had one Doctor he wa a Neurosurgen(who was a pig of a man)told me that I wouldn't know what pain was, I showed him a photo of myself that my daughter had taken I night when my face was dropped on the right side and my eye closing and I was just wanted to cut the whole right side of my face off it was driving me crazy,anyway when he saw the photo he just said Oh you look like your in pain there and that was all. It has really annoyed me in the fact just because people can't see the pain they really don't beleive you. My children have learnt not to depend on me as some days I really can't do anything. things like just stirring a mixture can trigger pain in my neck and head and the next minute I have no voice; trying to hang out the washing causes pain where I can't move, and I really hate the wind I am so pleased that I live in Queensland and that we don't have a lot of winter and once summer is really here there's not too much wind. I have totally lost faith in Doctors and their attitude. I've tried quite a few different medications and also nerve burning I can't really say whether the nerve buring helped very much at all I started to get complete body spasms after I had that done where I would be lying in bed and my whole boy would just jerk. I f I try to talk when I have lost my voice to a whisper I become really light headed as I am trying to push out the words. All of this has really infered with my life ( as anyone out there all ready knows this themselves). I use to work with special needs children whom I absoulely love to work with, teaching them and doing occupational therapy with them and now that has all stopped. After the accident when I went back to work I ended up working only for two hours a day; and this was so hard sometimes I would be sitting with a child and I would have to say I can't move or I would signal that I couldn't talk and the children would be just wonderful they would either race and get another the Learning Support Teacher or get me a pillow needless to say I had to end up stopping - you can't really teach when you can't talk. Typing this is hurting. It's affected my Social life (once again as you all well know) you try to act normal and you end up paying for it. I really have to stop now but I like to talk to anybody. Name: arnold I began with TN approx 87, got desperate in 90 and underwent MVD. Never pain free there aftere but some improvement, in 92 a glyxcerol injection and in 95 Gamm knife. I was not very well informed and was searching for the non-existant "magic bullet". But what did I know. It seems to me surgery only servers to further antagonize the nerves and the injured nerves react in ways that can not be predicticted. Dr. Ernest Mattherws of Mass Gen Has, a surgeon yet, convinced me to exhaust chemical means. One problem I would like to talk about is how TN interfers with ones ability to earn a living or maintain a practice ( I have the good fortune of earning my living with my mouth, speaking, winning others to my way of thinking, I am an attorney) anyone need a lawyer that can't speak? The medical problem of TN is vicious and crippling but it also interfers with earning a living, which simply adds to the stress which then may bring on another attck. Suggestions anyone ? How does one cope with not being able to earn a living or worse, watch a practice slowly vanish due to the inability to speak? Name: Cathy I was diagnosed with TN about 1993, it took almost a year of various drugs, which all made me to tired to work, and several tests, which all of you have had, before they the doctor decided I probaby had TN. In July of 1994 I had the MVD surgery, and I have had great success until now, about 3 to 4 months ago, I started experiencing pain again. I have been to the neurologist and he has prescribe Neurotin, but it makes me very sleeply. I have been really discouraged to think that I may have to go through all this again. I don't think I could stand that surgery again. It took me a while to get back to normal. It has been a great 7 years without pain. I kept telling my self that this could'nt possibly be back, but the doctor confimed that TN was probably where this jabbing pain was coming from. Has anyone else out there had this come back after so long?
Name: Patty My father's story starts about a year ago and has been a long excrutiating painful journey for him and my mother. My dad was 72 when all of his problems started. It began with pain radiating down the side of his head and face and upon touch you could send him into a convulsion-type state. This would absolutely scare my father and all of us to death, we could not imagine what was going on other than maybe mini-strokes or something of this sort. We took him to our local hospital which admitted him for testing that went on for about 5 days and they were just completely baffled by his case. I watched as this hospital more or less used my poor father as their own little guinea pig because of their failure to diagnose what he had. They would come into his room and run their finger down the side of his head just to watch these little convulsions and be fascinated by them and him not wanting them to do it again because it scared him so bad and was so painful. They finally sent him home--undiagnosed and put him on a regimine of about 15 different medications --everything from heart problem medication to high blood pressure medicine along with seizure medications. I sat back and watched this big, energetic strong, vibrant outdoorsman loving man go down to a man who sat indoors, lifeless, scared, and deeply depressed because he felt as though life was over. This man was so healthy, he never spent a day in a doctor's office or hospital in almost 30 years. They has told him that he had also had a stroke at this time and he was afraid to leave his home or even be alone. I did get to see this draw he and my mother closer than ever as all theses things took place. They have been together for 50 years and I'm just now seeing them holding hands while they walk together as they were being sent from different doctors and hospitals. They kept telling him that they needed to get his blood pressure down first before they could help him--what a joke! Finally, after almost a year ago, the pain got so bad on October 13, 2001 he was almost begging for help so he once again went back to the emergency room and all they did was blood tests with negative results and sent him home. At this point, my father could not drink, eat, or even stand to go on. On the night of October 14, 2001, my father could not sleep with so much pain and woke my mother to tell her that he was just going to do what my uncle "Bud" had did a few years back. This was to commit suicide! My mother cried as she told me this over the phone. The next day we took him to the emergency room at a VA hosptial about and hour away and within 15 minutes the doctor had diagnosed the problem and did a CT scan and proved his point. WE are so angry at these doctors for all the suffering that my mother and father has had to live with. It seemed so unfair and unjust. I cried at relief for my father at last--and I cried too, that I almost lost to suicide so people need to realize how painful this condition can really be, we've lived it and it is not an easy thing. Name: "sue" 32 years ago I began experiencing facial pain. My medical doctor thought I was "imagining" this and prescribed thorazine. The medication didn't work to stop the pain and in addition I was so drowsy - I was banging into walls, etc. feeling quite drugged. I found a neurologist and he referred me to a doctor in Syracuse, NY. (I lived in Minneapolis, MN.) Previous to this I was taking injections into my face - novacaine..this was short lived as I was told the scar tissue builds and another treatment must be sought. I saw the doctor in Syracuse and he injected novacaine into the base of the brain - the ganglian nerve. I had minor numbness for 31 years....and no more pain. I have felt the pain slightly only twice. Now it seems to be recurring. I have experienced the death of my mother, my nephew and the sudden death of my husband this summer. So, I'm wondering if this is stress-induced. What treatments exist today. Has anyone ever heard of the injection to the base of the brain. I was pretty satisified for 31 years. Looking forward to comments. Sue Name: marilyn evans I was diagnosed with tn 5yrs ago 7 WAS PESCRIBED TEGRETOL I HAD SUCH A ROUGH TIME WITH THEM I WAS SENT TO A NEUROLOGIST & HE PESCRIBED BACLOFEN TO GO WITH THE TEGRETOL SO I COULD CUT THE TEGRETOL DOWN A BIT THE PAIN BROKE THROUGH SEVERAL TIMES & EACH TIME I PUT THE TEGRETOL DOSE UP MY BODY BECAME TOXIC & I COULD NOT FUNCTION. I DECIDED TO GO TO A NEUROSURGEON TO HAVE MVD & THE PAIN STOPPED I AM still on a small dose of tegretol & baclofen but the problem is I also suffer from high blood pressure & have to keep having my tablets increased as the tegretol is eating up my blood pressure medication & i am so depressed.My dr. told me that neurinton has been released in australia which would be great as it does not have the side affects that tegretol has but until 2002 it is approx. $200 a month supply.people have no idea what it's like they can't see you in pain so they think everything is okay.it's good to talk to people that really do know exactly what you go through. Marilyn Evans Name: Lori Just an update as to whats going on since the gamma knife suregery in Dec of 2000, Felt great not pain, no drugs, until about May, and then I started getting numbness on the same side, thinking it was just a delayed side effect of the Gamma Knife, I didn't worry too much, until in September the shooting pains, started again as little twinges, and now is back in full force almost. Trying still to avoid the tegretol,I am taking Vitamin b-12 , which helps with the numbness some and I am seeing a Upper Cervical Specialist, who has me seeing him 2 days a week for 12 weeks and then once a week for 6 weeks, so far I can see no results, just a very sore body, he says it will take awhile to get everything aligned, and then as it heals correctly, I should have relief, I am skeptical,and if my husbands insurance did not cover his charges, I could not afford the route, but I really have to put my faith in Him right now, because the only other alternative I see is future surgeries, or a life on Tegretol, which for me is NO LIFE, because I can't function as a person on it...... So, we shall see, I pray this works, because I don't know where else to turn......... Name: kevin hi i'm 36 yrs old 5 mnths ago i started ear pains for the longest i thought i had some kind of ear infection but thin the left side of my nose started hurting to one night about 2am it got really bad so i went to emergency the docter saw nothing wrong and told me to take some asprin i was kind of mad because i knew it had to be somthing, any way a few days later about 4am i got realy,realy bad so bad i could not sit still so i went to another hospital and told the docter what my symptoms where sharp pains on the left side of my face he then told me it was tn i was glad at that time to at least know i was not crazy i knew this pain was not normal and its hard to explain it to someone who does not have tn i honestly have to say it's the worst pain i have ever felt my nose,temple,jaw teeth eayes and lips where just wrecked with pain i would have had brain surgery to end the pain, well the docter told me to see a neurologist so i did she did a cat scann and saw nothing wrong with any of my nerves she said because of my age its rare for me to have tn she said it's mostly due to old age and thinning of the veins which tend to overlap ,or somthing putting pressure on the trigeminal nerve whuch was my case i had a svere sinus infection which was not draining i had surgury had that stopped the pain dramaticaly i still have little twinges but very minor ones i think it's due to some bad teeth that need pulling i don't know if this letter helps anyone i know the other letters helped me alot to know i was not the only one dealing with tn Name: "JO-JO" I'm writing for my step mother who's had this condition for as long as i can remember. I grew up under her care and i've always treated her like a real mother. She's very special to me. She is 62 years old and until now i still see her cry and roll in pain. She's here visiting me from the Philippines and going back on the 15th of this month. I remember when i was young and we were living in Israel, she was always in and out of the hospital. She got treatment everywhere and by alot of top doctors. But it seems all the years that we've stayed there, she was never cured. We've even gone to spiritual healers hoping for a cure, but unfortunately nothing happened. I read in the internet that there is a way to stop this once and for all and that is through surgery. Unfortunately, we cannot afford it. I am still hoping and keeping the faith that one day my mother will finally be cured and live her remaining years painless and happy. Name: kevin, hi i'm 36 i was treated for tn about 4 months ago it started when i startes having real bad pains next to and in my ear i thought i had a ear infection, but one night it got realy,realy bad so i when to the emrgency room and they said to take some asprin and that was it,i left mad because i knew this type of pain was not normal and i knew i was not crazy, two nights later same pain this time worse my nose,temple,lip and jaw was all in pain so bad i could not sit still so iwent to the emergency again 4am in the morning,this time another docter saw me and told me what i had tn, i felt a little relief at that point to know what it was and that i wasen't crazyit's hard to explain the terrible nerve pain of tn to someone who dosen't have it you'd be willing to have brain surgry to end the pain if you had to. but any way the docter said to see a nurologist so i did , she did a brain scan and saw that my nerves were fine she said most youg people do noy get tn it's mostly caused by iflamation of somthing to the trigurial nerve or a nerve overlaping of it , but what she did see was that my left sinus cavity was full so she sent me to a nose docter sure enough my sinus was not draining so i had it drained ,the pain has subsided dramaticaly but i still had some miner pain my nurologist said to get some of my bad teeth in the back pulled which i did today hopfully that will takecare of everything , i do not know if my experiance will help anyone i know reading the other accounts helped my to know i was not the only one with tn thanks Name: sue I would like to speak to anyone who could suggest what I could do. It has been suggested to have a neurostimulator implanted with electrodes in the brain. Is there anyone who has done this procedure or has any information regarding it? I recently had botox injections that were not successful. Is there anyone out there who has had a similar experience with a droop of the upper lip as well as a continuing pain resulting from gamma knife and MVD surgery. I am on various medications. Thank You, Sue Name: Rhonda My 65 year old mother has TN. Her pain started in January 1999 but the actual diagonis wasn't made until the fall of 2000. I believe it is considered to be atypical because the pain has been constant. She has never been forunate to have any periods of remission. Last December she had the gamma knife procedure done. It lessened the intensity of the pain but didn't not eliminate it. The amount of pain medicine that she required did not decrease either. Around May of this year the pain worsened. She basically had to be sedated and keep in bed for six weeks until they could do surgery. I believe the type of surgery she had was microvascular decompression. She had this surgery two months ago today. Before the surgery she was on a liquid diet only because she could not eat. She still has the pain but she in now up to a soft food diet. Some of the med she is taking is methodone twice and tylnol every four hours. Our family doesn't know if this means the surgery was unsuccessful or is it the normal recovery for such a major surgery. Does anyone know what the typical recovery process is? Our family is praying that as she heals from the surgery the pain will go away. At this point we would be happy if the pain was at least managable for her. Needless to say this has put quite a strain on her and my 73 year old father who is her main care giver. My mother is also suffering from depression and anxiety attacks which leads to bouts of vomiting. Various family members has suggested counseling but they seem to have a "we will do this all by ourselves" attitude. On top of all this I am getting married at the end of the month. Naturally my mother is upset that she isn't well at this time. Can the depresssion and anxiety actually slow and hamper her recovery and or cause/increase the pain? Our family feels like it up against a brick wall right now. Any suggestion or informationn will be greatly appreciated. Thank you Name: kristy Sun- toothache, woke everyone up Mon-feels better Tuesday- comes home from school with severe tooth pain. Visit denist who says teeth are fine. within 2 hours, in emergency room for severe pain. Emergency room doctor transferes my son to Riley Childrens hospital. Neurologist there states he needs to see a denist. After hours of screaming the doctor gives him Naproxen and sends us home. Wed- attaches occur throughout the day. Eric sleeps alot and takes lots of advil Thursday- E. R. visit. Eric is on the floor in pain. Er Dr. states TN, but has us go back to his denist. Denist confirms TN and gives Lortabs. See GP who confirms TN. He prescribes Tegrotol. Fri- Eric is in such severe pain. I hide the Lortabs (he wants more). Eric states he is afraid to go any where. This has been our first 4 days on TN. My son is an active 13 year old boy who plays soccer, basketball, baseball, football and is in Boy Scouts. He is now unable to leave the house to go for a short ride. I would like to hear from others who may have children with this disorder or anyone who has words of hope. Name: MICHELE HELLO MY NAME IS MICHELE. I HAVE HAD PROBLEMS WITH MY TEETH SINCE I SERVED IN THE MILITARY 14 YEARS AGO. WHERE THE MILITARY FAILED TO TAKE CARE OF THEM. I ALSO HAVE HAD SERVERE HEADACHES FROM THE PRESSURE THAT WAS PUT ON MY BODY WELL IN THE MILITARY. I HAD ROOT CANALS DONE ON MY TEETH. IN 97 MY ROOT CANALS I HAD DONE STARTED TO HURT AGAIN. I WENT TO A ROOT CANAL DOCTOR AND HE DID ROOT CANALS ON MY TEETH. THE ROOT CANALS HE DID ON MY TEETH, HE RETREATED. THE PAIN WAS SO SERVERE BY 99. HE REFERRED ME TO AN ORAL SURGEON. WHERE HE PERFORMED DENATL SURGERY ON ME. IT WASN'T HELPING. HE REFERRED ME TO A PAIN CLINIC WHERE THEY DIAGNOSED ME WITH OCCIPITAL NEURALGIA. WELL WHAT HE SAID WAS THAT I HAD A COMPLAINT OF PAIN IN THE BACK OF MY HEAD WHICH SOUNDED LIKE IT. IT WAS A SHARP STABBING PAIN IN THE BACK OF MY HEAD. HE PUT ME ON NORTRIPTYLINE AND A PAIN MEDICATION. IT REALLY DIDN'T HELP, BUT IT WAS BETTER TO BE ON PAIN MEDICATIONS THEN NOTHING. I ENDED UP AT ANOTHER PAIN CLINIC WHERE THEY TRYED BACKLOFIN, TEGRETOL, AMITRIPTYLINE, AND ULTRAM. I HAVE ALSO TAKEN CODIENE FOR THE PAIN. I TOLD MY DOCTOR I WAS IN SO MUCH PAIN IN FEB OF 2001. I WAS TAKING MORE OF THE ULTRAM THEN I SHOULD HAVE BEEN. AT THE TIME I WAS ON AMITRIPTYLINE AND ULTRAM. HE TOLD ME THERE COULD BE A CHANCE I COULD HAVE A SEIZURE. I HAD TWO SEIZURES. I FALL IN THE BATH TUB BLACKENED MY EYE. I WENT TO THE HOSPITAL THEY TOLD ME IT WAS A BROKEN BLOOD VESSEL. WELL 2 WEEEKS LATER I HAD A GRAND MAL SEIZURE. THE DOCTORS BELIEVE IT WAS COMING FROM THE MEDICATION. I HAVE BEEN TO A NEUROLOGIST THAT HAS RULED OUT THAT I HAVE TRIGEMINAL NEURALGIA. I JUST WENT AND A DOCTOR RULED OUT ME HAVING TMJ. I AM IN CONSTANT PAIN 24-7. MY TEETH HURT SO BAD. IF I EAT, BRUSH THEM, DRINK ANYTHING THEY BEGIN TO HURT SO BAD. I WENT TO HAVE THEM CLEANED LAST TIME AND CRIED. IT HURT SO BAD. MY DENTISTS WILL HAVE TO NUMB ME. IF ANYONE OUT THERE IS EXPERIENCING WHAT I AM WOULD YOU PLEASE EMAIL ME, OR IF A DOCTOR READS THIS AND KNOWS WHAT COULD BE WRONG WITH ME PLEASE EMAIL ME. Name: Barbara For at least 2 years I have suffered pain in my scalp, forehead and eye. One minute I can touch any of these areas and I'll be fine, and minutes later get piercing pain, esp. in my eye just adjusting my eyeglasses, or touching my forehead. Also, most times when I blow my nose, it will set off the pain. Of course, talking and chewing will do the same thing. Do you know of any drug that will cure this painful condition? Thanks for any information you can give me. BT Name: BLS would like to hear from someone with similar symptoms. My facial feels like it swells up, & starts moving around.Like it was 2 feet long, trying to settle down in a 6 inche area.Sometime I will have this feeling for days before the pain.I also have a tingley numb feeling all over the left side of face & up into top of my head. It stops at half-way point in top of my head. I just freeze for a few seconds when this happens. I would like to hear from anyone having similar symps. Name: Darla Hi, I've had this pain since 4/97. Had the MVD in 12/97, but had a head on car collision on 3/8/98, which undid everything. I've had nearly non-stop pain since this started. I would love to hear froom people near me (bethany, OK and perhaps get a support group started. This is a nightmare that is very difficult to go alone. You can mail me at 7801 n.w. 29th srreet, Bethany, OK 73008. If you knnow of a support group or would like to be in oone, maybe we could start one just to share wwhat we have been thru. Blessings to all. Darla griffin Name: Norma I have had trigeminal neuralgia for 11 yrs. After reading all the stories here, I feel very fortunate. The pain I have is excruciating, but is so lightening fast that when it reaches the unbearable it is then subsiding. Sometimes tho, when it is really bad, instead of scattered spasms throughout the day, the pain is more like a pulse. That is when I find it hard to function. I ususally have a couple weeks of remission, but those times seem to be fewer and farther between. The TN is on my right side, in under my cheekbone. At some point I know I may have to seek treatment of some kind, if the condition worsens, but I have no medical insurance, and from what I have read here, surgery does not guarentee the pain not returning. I have another condition that I have had for 20 some yrs. On one side of my head, face or neck will experience pain that feels like a sunburn. People thought I was crazy when I'd say my skin hurt. When the top part of my head is involved, it hurts to blink my eye. My scalp will be sore (like when you take you hair out of a barette that has been in all day...not that you guys out there can relate to that!!) If the lower face and neck are involved, my gums, nose, ear, and the inside of my throat feel raw pain. When I first had this, I would think I was coming down with a cold...burning in the nose and sore throat. Then I'd wake up the next morning with the pain all over that side of my face. Sometime I also experience sharp stabbing pain in my ear or neck on the invloved side. Ocassionally this will be on other areas of the body. Shoulder, arm, leg, but it is most painful when it is the face or neck. A neurologist dx was that it is a form of Migraine. It does move from side to side, usually lasting a couple days. If it is on the right side when I am having TN, then I'm really in for a fun day!!! This thing happens a few times a month, and if it is migraine, I am glad I have this form rather than the typical migraine headache, cuz I can function with it alot better. I treat both of these problems with asperin or advil, with some relief, but have to take it every couple hrs. A Dr. just gave me a rx for darvocette, to see if it helps. I took tegretol 11 yrs ago, but broke out in a rash, and gained 5 lbs in a week, so quit that. From the sounds of it, I think I am better off just dealing with the pain episodes when they happen. But, I have not experienced the level of pain that would have me rolling on the floor as some of you have described. Has anyone else experienced the skin soreness like that? It sounds kinda like the Atypical TN that some have described, so I'm not sure of the dx of migraine...Best wishes to you all. Hope they find a cure for this awful disorder. God bless..N Name: Angela About two years ago I had skin graf surgery for receeding gum lines. I have been diagnosed with Trigeminal Neuralgia. I have chronic pain and burning sensation at the donor site, a/k/a the roof of my mouth (left side) where the skin was taken for the graf. I have been to numerous doctors. I went to Shands Hospital for a year and a half for treatment. Nothing seems to help me. I am alergic to Codeine, Neurontin, and Elavil. Klonipin makes me feel semi-zombie, so I can't take it during the day becuase I HAVE TO GO TO WORK! I recently started Acupuncture. I went back for my second appointment and the doctor quit or got fired, I don't know. She is a chiropractor and certified acupuncturist but no longer there. Boy is this frustrating!!! Please share any success stories that you might have. Name: Vickie After reading some of your stories, I feel greatful that my doctor at the Emergency Room had some knowledge of TN. I ended up at the ER after having severe pain that seemed to start from my lower jaw and radiate up the side of my nose up to my eye and to my lower ear. My husband made me go after seeing me in tears from the pain, unable to walk or talk and barely able to breathe. When asked how I ranked the pain, my response was that it was an 8 on a scale of 10, since I wasn't in pain right at that moment, the nurse looked very skeptical and almost smirked at me. The doctor poked around the tooth that I told him needed some attention and there was no tenderness or pain. He asked me to describe the pain to him and how it radiated. It took him about 30 seconds to tell me that he thought it was TN. He prescribed Vicodin at 1500 mg every 4 hours to aleviate the pain until the Tegretol took effect. I felt nauseous and drugged for 3 days. I followed up with a dentist who told me I should have the problem tooth extracted. I followed up with my Primary Care doctor who did sinus x-rays, no other source of pain can be determined and she gave me a referral to a neurologist. I am going to the neurologist on 8/29. If there are any specific questions I should ask I would like to know. I am 31 years old and have never had an episode like this. Can I expect that it will just get worse? Or is there a chance that since it was caught quickly that I won't need to worry about it? Is it possible that the episode was stress related? For the women, did the tegretol cause breast tenderness? And I read somewhere about bruising; my bruising has become noticibly worse just in the past week. Instead of having a green or brown hue they seem to be bigger and more blue or purple in color. If anyone has any answers or advice, I will appreciate it very much. Name: "Potentate" I too have suffered with TN since 1989. It started right after a root canal on the upper right molar,Thinking it was an infection of the sinuses and teeth, the MD put me on massive doses of antibiotics. I would take them for years on and off and at times my condition would improve slightly. But then I became allergic to many antibiotics and I also built up a resistants and would have to take stronger and stronger antibiotics. As you sufferers with TN know so well the pain can be excruciating day by day it is horrible. At times the flare ups put me out of commission. My right side of the face is affected, the upper and lower teeth, the cheek, ear, and tongue. At times I am unable to talk, even swallowing is a nightmare. Have missed more family get-togethers and other things, just because of the horrible pain. I am taking daily 1500 mg Neurontin,Ultrams, Soma at bedt time, occasionally Tylenol #3. I am allergic to Tegretol. The one thing I must share with my fellow TN sufferers. Throughout all the years of agony, I have been kept from depression and giving up attitude. This I give credit to God and Jesus Christ alone! Have totally given my life over to God, and since then I have experienced incredible peace and joy! My heart is always joyess, just knowing that Jesus Christ is with me and He will never fail me or forsake me. He also promised His healing in His word, Isaiah 53:5 and 1Peter 2:24. I have been selected by the University of Seattle to have Gamma Knife surgery. If anyone has had this procedure I would love to hear from you. Any pros and cons about it? Thank You and God Bless You. Name: Brad I had micro decompression surgery in 1998. Seven months ago the pain was back I have been on neurontin for a couple of months with great great results. But the pain is back worse than ever. I taking hydrocodone which seems to help some. My doctor suggest the gamma knive. Any thoughts about that. Please Help. but Name: Lisa I have been experiencing facial pain for 6 1/2 years now. I had to undergo physical therapy for 6 months after injuring my neck,arm and shoulder. Right after I finished therapy I began to have facial pain that lasted up to 2 weeks at a time {every month}. My doctor claimed that I was just depressed because I sat in his office and was crying and half laughing because he could not figure out what was wrong with me. He then prescribed Elavil for me. I did take it and in the meantime have been through doctor after doctor and dentists and oral surgeons {as many of other people have claimed}. I did not let the dentists pull any of my teeth or talk me into any root canals as they could not be certain that this was the cause of my problems. My new doctor referred me to a neurologist only because I kept going back to him and complaining of my face pain. The neurologist tried all kinds of meds but to no avail. I kept going back to him because I was still in severe pain. He finally sent me to a neuro-surgeon, who claimed that I had TN. Therefore I underwent the mvp surgery and had relief for 1 1/2 years now. The other day I began to experience short bouts of the pain again. This started after I began to have neck and shoulder pain again. I became depressed so I hopped on the internet to research to see if anyone else had a reoccurance. I found out enough to discourage me plenty! I thought to myself that there must be some connection between the neck and face pain. I did some more digging and came up with a site called NACUCC (National Awareness Campaign for Upper Cervical Care, Inc.) that many of you may want to check out. Although it may not help everyone, it may help some of us. I have not been to a doctor yet, but I am going to check it out. It sounds as if we are all having surgeries on the wrong areas--head vs. neck. The nerves associated with the neck are in relation to the trigeminal nerve, therefore this may be what the whole problem is!!! Since I am starting to get the face pain back I plan on checking this out. God bless everyone with this condition and may we fight back and finally get some relief!! The web site that i visited is www.uppercervical.org in case anyone would like to research the topic. Thanks sooooooo much for everyone,s input and stories of their face pains. Lisa Name: margaret ALLERGIC REACTIONS TO TEGRETOL AND DILANTIN SAW ME TURNING TO ALTERNATE THERAPIES IN ATTEMPTING TO BECOME PAIN FREE. I FELT LASER ACUPUNCTURE WAS THE ANSWER INITIALLY - YES - 12 MONTHS RESPITE AFTER A SERIES OF TREATMENTS. BUT SUBSEQUENT ATTACKS WERE LESS SUSCEPTIBLE TO THIS METHOD OF RELIEF. THEN CAPSAICIN SEEMED TO HELP. I STILL USE IT 4 TIMES A DAY, TOGETHER WITH NEURONTIN. MY PAIN IS CONTROLLED. WHEN THE PAIN BECOMES INTENSE I SHALL HAVE AN M.V.D.FROM THE BEST NEUROSURGEON IN SYDNEY. I HAVE CAREFULLY RESEARCHED THIS CONDITION AND THE VARIOUS TREATMENTS AVAILABLE. Name: Mark Where do I start, I went in for major back surgery on 4/10/01 and was perfectly fine. After 7 1/2 hours of sergery laying face down I awoke to a numb spot on the top of my head,one on the right side of my face and one on my lower left rib cage. I asked my spinal surgen about it and he said don't worry about it they will go away in time. Well after about 6 weeks the one on my head started to go away as did the one on my rib cage but the one on my facedid not. At first the right side of my face started to tingle like little needles and then the burning started. I told my surgen what was happening all along and he finaly started me on 300 mil. of Neurontin and 100 mil of Ultrom and made me a referal to a Neuroligist. Ya! 5 weeks away. By this time I was rolling around on the floor in the most agonizing pain I'd ever exsperience in my life, what a nightmare. Six week's ago I finally saw a Neurologist he ordered up a MRI to see if I had any tumer's ect, came back except some kind of mass on my right side sinus area. Where they layed me face down. My wife said that when they brouht me from surgery I looked like someone had socked me in the right eye, I was all purple there. The Neurologist has diegnosed me with Trigeminal Neuralgia what a bummer!!!!!!!! He kept me on the neurontin but started uping the dose. Started me on tegretol and celexa made me a referal for ear,nose and throuht doc. Get this I am currently on 3600mil.Neurontin,900mil.Tegretol and 60mil. Celexa per day. Some releif from the major burner sezuirs but still have constant throbing and burning. Never in a million years would I'd a thought I would go in for back surgery and come out with this!!!!! By the way I had a lower lumbar fusion and I am 43 years of age. Anyone out there with any advice I sure would like to here from you!!!!! Name: Tedi I was diagnosed on June12th with this nightmare. The pain and trigger points continued to increase. TN on my right side, middle brach. Within 3 weeks, I could not eat , talk or brush my teeth. My dentist made the initial diagnosis. My PCP did not know what to do...I demaded a drug attempt form all the reading I was doing. We tried Tegretol and I had severe nausea that inhibited my ability to work or function. I had to chose between being doped up or not being able to function. Further reading led me to demand trying Trileptal...my PCP told the insurance provider that I would not 'tolerate' the other drugs. It has worked. I take 300 mg three times a day. I must take the durg on schedule, otherwise the pain returns. I vist a Neurologist tomorrow to discuss long term effects and considerations. I at least feel there is hope. Name: Guy My facial pain started in March 2001 and has been continuous since then.The location of my pain does not seem to correspond with many of the accounts posted on this web page. That is my pain is not on one side of my face or the other but rather is centred on my chin and the under chin to the throat area. I have yet to receive a diagnosis but perhaps I've got atypical atypical facial pain??!! Initially the pain started as 'sensitive skin' which made shaving very difficult. This rapidly developed into a constant hurting sensation, sort of stinging, burning, tingling. This soon developed into a 24 hour pain which is made much worse by eating. It is usually after eating that the pain intensifies and the area under my chin to my throat becomes numb and occasionally it feels like I'm beginning to go paralysed there. Eating has become very difficult as I know the consequences that follow are extremely unpleasant. This has led to me not eating all day until the evening. I have lost about 25Lbs in weight. I have to avoid hot food as this exacerbates the situation. I try to eat soft foods. Unfortunately my appetite is as healthy as it ever was. I dream of being able to eat a meal and just enjoy it!!! Wind, central heating, water, etc all exacerbate the pain. I can't even touch my chin gently without feeling sick with pain. When I first started experiencing this problem I thought it might purely be a skin problem as the area under my mouth to the chin can go a bit pink/red.Also when I use my beard trimmer to keep my facial hair as stubble (shaving is impossible)the skin in this area flakes off. For this reason I tried some antiseptic cream, then lotion but this made it much worse. I then thought it might be execema and so tried some emollient cream ... ouch!!!!!!! I then went to see my first doctor who was not interested in getting into a dialogue with me to hear my description of what I was experiencing. He did not even examine my face but rather prescribed me a months worth of antibiotics. These did not work. I think partly due to a busy work life and perhaps more honestly due to being in a state of denial (my brain kept saying this can't be happening and it will go away soon) I didn't go to another doctor for a couple of months. My disallusionment with my doctors responce also influenced this inaction. Anyhow I have registered with another doctor who has listened and taken my situation seriously. This doctor has referred me to a neurologist (I'm waiting to hear when my appointment will be) and has prescribed me amitriptyline (20mg a day with no impact as yet). The dosage is to be reviewd in the next few days and will, I should think, be increased. This doctor feels that my problem must be some sort of neuralgia due to the numbing, tingling and pain. I must admit that I thought he was going to refer me to a dermatoligist but he said that nerve damage/conditions can affect the skin in this way (as in the case of shingles). Have any of you had a similar experience to mine? Can anyone tell me anything useful about taking amitriptyline long-term? Any other tips, advice, comments and opinions about what I have written would be gratefully received. Thanks for taking the time to read this. Guy Name: Renee I have had 26 major surgeries on my right sinus. I had an aggressive fungus. I had to keep having surgery to keep my sight, and the fungus out of my body. The fungus invaded the optic nerve once. Well to make a very long and complicated story short the nerve in the ride side of my face have been damaged from so much surgery. I have been told that I will have to live with this because surgery on the nerve could make it worse. I have cried and cried like a baby. I just want the pain to go away so I can have a normal life. I am only 26 years old and I'm always in major pain. Sometimes I hurt so bad I don't know if I'm gonna make it or not. I also have very high blood pressure from being in so much pain. I am also on 2 medications for that. My blood runs 150/120. That is dangerously high for a person. I am at the end. Name: "Cachet" I am a 55 year old woman. I am not even sure when this started. I remember having short episodes for a long time but ignoring them so as not to frighten my kids. They would go away quickly..and not come back for a long time. Then about 4 months ago I had an "attack" in the grocery store parking lot. The pain was so excruciating that I fell on the ground. This pain begins at the back of the jaw kind of under and behind the jaw, on both sides! It radiates to the front of my jaw and down both sides of my neck, into my shoulders and down my arms. In the process I find it really hard to breathe as the buring sensation in my throat is almost unbearable. When having this pain in my jaw and down my neck all I want to do is rip out my jaw! It is unbearable. I have considered having all my teeth removed. Anything to get out of this pain. I have had CAT scans, MRI's every cardio test they can think of and seen a neurologist who says I have TMJ. Well, I do NOT have TMJ. This jerk didn't even check me out! Just came to that conclusion! (I have to go to the VA Hospital, so my doctors are limited sometimes.) My primary doctor has been going crazy trying to figure out what is happening to me. She said it definitely is NOT TMJ. She evidently did some research on TN. She called me at home yesterday and told me about it. There were symptoms that fit me to a tee. She increased my medication (gabapentin and divalproex) and said we would increase it more but slowly. My pain is not constant, thank God. The attacks began at a rate of about 1 every 2 weeks or so and then 1 a week, then 3 a week, then 1 a day and now numerous ones everyday. I am scaring my husband to death although he knows what is happening. He is totally blind and as you can understand, is really having a problem with this. Thank God he loves me so much and is so supportive. We have been married almost 1 year. It is really hard on him as well as myself. My attacks last about 5 minutes at a time..then they can come back within a couple minutes or just go away until later in the day or the next day. You never know. My quality of life is terrible. I don't want to go anywhere anymore for fear I will get an attack. I am afraid to drive and of course, my husband cannot. I very seldom even go outside in the yard anymore. The depression is overwhelming. I have been on anti depressants for about 4 years now, but they are not enough to get my mind in a good place anymore. I have lost my job because of this. My life is hell but as I read other stories I realize this could be much worse. I read somewhere on the internet about a hospital in Ohio that has a department that specializes in facial neuralgia. Has anyone heard of this? If I can find it again, and if all other things they are doing prove fruitless, I think I would like to check that out. Thanks for listening. I was wondering if anyone else out there has the symptoms I have. I also get the burning, crushing and stabbing pain in my jaws and down my neck and shoulders. I can also feel an attack coming on...like I just don't feel right and then a slight pain begins in back of my lower jaw. I have about 10 seconds to get someplace to sit or lay down as the pain is too much to handle standing up! My doctors ask the level of my pain..1 through 10...I tell them 10 being childbirth....and NEVER saying before anything was that bad...this is a 12!! I am just beginning but at least my doctor seems to be on the right track. I read one person on here that said just putting a name on this thing was a relief. I feel the same way. I was feeling that I was the only person out here with this thing. In the beginning my doctors said they had never seen anything like this before. The neurologist I have had to see is worthless so I think I will try to see another very soon. If anyone is experiencing anything like this, please email me. Let me know I am not alone.
Name: Rita Since my surgery in 1998- pain recurred oct 1999. Restarted Tegretol- since I was allergic to Neurontin and Dilantin- 10 days after I started them taking 300mg a day- my throat was very itchy and I cough a lot. on the 17th day I got up with a terrible head ache and sore throat and itchy throat...I then started Baclofen only. January 2000 I was on 50mg of Baclofen my throat was itchy and I cough a lot worst durring the night.. Since its the only kind of medication I can take for TN I thought nothing of it. I went in remition in Mar. 2000. I had Pulmonory test done Mar. ist 2000, I was diagnose with mild brochitis asthma and put on Serevent and Flovent and Singulair. January 2001 TN started again..started Baclofen. When I reach 70mg of Baclofen a day in March my troath itch a lot and cough a lot...My stomach hurted and reflux realy bad...had to sleep sitting down..been going for test for my stomach since. To day August 6th I notice for the last 2 days don't cough during the night..I started cutting down my Baclofen 2 weeks a day..I am now down to 2 a day...SO I MUST BE ALLERGIC TO BACLOFEN TOO? My Neurologist gave me AMITRIPTYLINE which I tried one 10mg one night..I had nightmare and felt tired as if I didn't have enough sleep. Very worried if Tn comes back again...which will problably come back.... wouldn't mind receiving comments to this. Rita Name: robert I was experiencing tooth pain in the left rear of my mouth. I thought nothing of it and continued on with my life. I then began to expereince head aches that I attributed to sinus infection I visited an ent who sent me for sinus X-rays. That very night the pain was so unbearalbe that I had to visit the emergency room. I eventually made four visits to the ER for pain medication before I was referred to a neurologist who prescribed the above listed medicine. I now have a minor aching head ache, it seems as if the monster is in my head just waititng to break through. Can any one tell me will I be on tegretol forever? Will that pain only be a few pills away? I am meeting my neurologist for the second time on 08/06 so these questions and many others are yet unanswered Name: Sandie ongoing problems since oral surgery, Nov 1989. pain, burning, swelling, redness..... no fun! Name: Karine I am a 25 year old. I have TN i have been dealing with this for about a year. I have two small children and a husband. Who has been by me. At first they didnt know what it was so i went to doctors after doctors so finally i went to a nearologist and he new right away what is was i really didnt understand so they put me on meds after meds so finally it was the last draw went i had to go to the er so the doctors said well we need to do surgey so i went for surgey and the doctors were very surprized that i went throught eight months the nerve was dirctly on the bone but i was so happy cause after i woke up i was pain free but that didnt last two weeks after the pain started coming back their i go right back on meds and right back being depressed and it was hard on my children and my husband well i right back where i started now my doctors want me t go to gamma knife so i am just praying that this is going to work.Well if anyone wants to tak or share stories please email me at karine2001@webtv.net Name: "Lisa" A close friend of mine is suffering from this condition. I was surfing the internet to find information on the subject, and I came across a story on this website from a woman who wrote in trying desperately to find some relief from this illness. She said she was 36 years old. I didn't take down her information, and I can't find her letter anymore. I hope that she consults this website frequently and will find this response. My Friend is being being treated at the Neurological Institute of New York City, and underwent "Gamma Knife Radio Surgery". My friend is currrently taking a combination of Neurontin and Tegretol. Everyone is treated and responds to medication differenly. This seems to be working for her. My friend and I would like to pass along this information with the hopes that it may help that 36 year old woman, or anyone else suffering from this painful disorder. Name: Gavrilah So far I have been from dentist to ENT to oral surgeon to neurologist to back to one of the doctors...I have had two CT scans and two MRIs, many x-rays and no diagnoses except for the ENTs saying that I have TMD and everyone else ruling that out. It has been over five years now. I have a consistent slicing pain and a taste between my back teeth upper and lower second to last molars. And a radiating pain from my right eye down along my right side of my face down my neck to my shoulder. Noone (doctors) seems to know what NICO is and they act as if I'm a hysterical hypochondriac when I ask about it. Much more... Name: joy I have suffered from trigeminal neuralgia for 3 1/2 years with no relief from medications. When it became unbearable I underwent a glycerin rhizotomy at Johns Hopkins University in Baltimore.Dr.Ben Carson was the surgeon. The surgery was 6 days ago. I am now completely pain free. My only regret is that I did not have this treatment earlier. Name: Libby I have not been diagnosed with neuralgia "Yet"but, believe this is what I have. I get this pain that is so strong that it feels like someone has just hit me full forse with a hatchet and it's coming throught my head and out my right eye. It's always there but, sometimes I can go for a week or more with out it reaching that strong point. I can't see any one thing that triggers it. It just comes. When it is bad my balance is off. I feel dizzy can't sleep or even think. I thought it was sinus,was treated that isen't it. I did have C4-C5 fusion on my neck almost a year ago. Thought maybe I ruptured another disc. Had an M.R.I. done this week and all looks well. Please, can anyone offer any suggestions. Life really stinks at this point. I'm afraid to do anything for fear I will set this head pain off once again. Thanks for listening, L.R.M. Name: "Whitecap" After a 17 year history of trigeminal neuralgia that followed the typical pattern. Periods of blissful remission, it would return with a vengeance. Pain episodes were closer together and more intense. Finally, in 1996, the rhizotomy was dodne with excellent results. I have the usual areas of parasthesias. (Sometimes, it seems as if there is a bug in my hair. I know there isn't, but I get the hairbrush out anyway. After a four year interval with no pain, I was nagged into asking my family physician for a prescription for "Zyban", the stop-smoking aid. There was an alert that it could cause seizures. I took Tegretol for 17 years for the neuralgia and it is also given for seizures. I didn't put the two facts together until it was too late. I took the Zyban for 8 days. I hadn't even reached my "Stop-smoking" date yet, and I was suddenly attacked with the Trigeminal Neuralgia pain on the LEFT side of my face. My prior history was on the RIGHT SIDE. i checked with my physician immediately. He said "of course it could cause that to happen if it could cause seizures. It is a cranial nerve group" I had to resume Tegretol for another 8 months. I have had brief intervals of remission since. I am a retired Registered Nurse. I try to keep myself informed and aware of such things. You do get blind-sided every now and again, though. I would love to hear from anyone who has had a similar experience. Name: phyllis My pain started in the summer of 1982. It was not very bad. It just seemed like a tooth problem on the lower right side. I had a lot of teeth worked on by replacing old fillings and the doctor thought that he didn't get the bite right. So I would go in and he would drill here and there and told me that he did not know what else to do. He sent me to a friend of his at a local hospital who was head of that department. He did a full set of x-rays and found nothing. He thought that it was just sensitive teeth and said that I should use a special tooth paste. I thought that I knew the tooth that was causing the problem and as the pain was getting worse I went back to my denist and made him pull a perfectly good tooth. The pain left for a while but came back. Finally the denist sent me to a neurologist and he told me he was sure that i had tn. He put me on tegretol. It helps most of the time. Some times I have to take a lot and it makes me not very with it. I am luck, my pain seems to go and come in one year intervals. I had a lot of gold fillings put in my mouth just before the pain started. Has anyone else had that experience? Name: "nephnurs" It started with acute vertigo and then dizziness and persistent left, stabing ear pain 17 months ago. Now, my migraines (which I've had for 30 years and have managed very well with depakote and Zomig have become "one" with a headache causing severe ear pain, throbbing left ear tinitus, dizziness and unsteadiness. Between major migraines I am left with the persistent left ear pain. Also, after a 2 week "seige" of migraine induced ear pain, dizziness, unsteadiness, tinitus I can also add a dull almost constant ache over my left sinus below the eye and it sometimes shoots across my face to my nose. MRI and MRA show an occluded right vertebral artery, a very tortuous basilar artery abuting the left facial nerve at the genu (also present in April, 2000). I can't find a doctor who will sit down with me to help me understand the anatomy and what surgery risks there are. I'm zoned on my medications and find it hard to work full time - I come home and snooze on the couch most of the evening. Help Name: Joan Diagnosed in May 2001..Electric shock type pain on the right side of the face..GP tried to settle it down by giving me Herbal Medicines..Did not work, Referred to Neurologist who prescribed Tregratol (Very bad side effects) than onto Dilanton (more side effects rashed hives etc) than onto Lamictal 100mls a day. When I first felt the pain I also had a lump come up in the roof of my mouth. Like a blood blister which was the size of a 5cent piece (Australian}. During the past 2 months or having TN was not able to eat, wash my hair, put my makeup on with out a lot of pain. It was the worst pain I have ever felt..I have been having acupuncture for 3 or 4 weeks now...I believe that this has done me some good...I have been pain free for 5 days and it sure is good to be able to eat again..My neuologist said that it may be short lived but I am looking at it positively and hoping he is wrong Even if the pain comes back, I will never take things for granted again..Just the things we take for granted...eating combing your hair, being able to go outside in the wind, having your hair cut and coloured,without experiencing the worst pain as only TN sufferers know ...So I say to all fellow sufferers never give up and try everything that may be of help to you...I believe the Acupuncture has been of great help to me. I will continue with it for a few weeks, although scale the number of times per week down. Take care and God Bless... Name: Lori The pains started 7/2000, I was under alot of stress at work, and thought I was having sinus problems, but then it got worse, and the dr said it was "migraine aura" yeah right....the migraine medicene he gave me did nothing, finally I went to him and told him I must have a brain tumor or something, because this was not a migraine.....I retold him my symtoms, he left the room and came back in about 5 minutes with TN description and I almost screamed when I read it, because I was so happy to have a name for it......he had me splash water on my face to get a reaction, and sure enough he got a good one........it was triggered by water touching my face, or a breeze, or sometimes just the way I turned my head.......I had never experience anything so awful in my life. He gave me drugs that stopped all the pain, but I was a zombie for the next couple of months, all I did was sleep and investigate TN on the web. I finally read about Gamma Knife, called my insurance company to see if it was covered, and made an appointment in Nov of 2000 and had the suregery a week before christmas. I have not taken any drugs since I walked out of the hospital.........but recently I have been experiencing numbness on that side of my face. I read about vitamin B-12 and have been taking that and it seems to help some days..... I don't know how long it will last, but it is much better than the shooting pain of TN. I will have the surgery again if it ever returns fully....I have a little zap once in awhile in the shower, but nothing major yet. I encourage anyone looking for relief to have the Gamma Knife suregery....it really saved my life, because I know I could not live with that pain or on those drugs much longer. Name: Kim I was 25 years old when I first started feeling the pain. My Dr. thought that I had a sinus infection. When the xrays came back with nothing, he told me to try the dentist. After having several dental appointments which included a root canal, which didn't help, the dentist said that the tooth was probably cracked and that he could pull it. I didn't care what he did, I just wanted the pain gone. I had the tooth removed but the pain was still there. He was beside himself. I began to feel as if I were going crazy. At this point, which would be about 4 years later, I went to a different Dr. and explained what I felt, I was a little embarrassed to describe the pain as I didn't want him to think I was crazy. Within 5 minutes of being there, he came out with his medical book and read to me, then I knew I wasn't crazy. He sent me to a neurologist and he put me on medication for six months, and I didn't feel any relief. He then referred me to a neurosurgeon. The neurosurgeon did an mri and he found what he was looking for. We decided the best solution for this was to do the Microvascular Decompression. I was a bit nervous, as I was only 29 years old and I had two children to look after. The surgeon went in and put a sponge between the brain stem and the blood vessel, and I haven't had pain on the right side of my face since. A few years later I started feeling the pain on the left side, this time it was ten times worse. It felt like all the nerves on the left side of my face were exposed. I couldn't believe what was happening again. This went on for several months and they tried to control the pain with Tegretol then Neurotin, but no relief was felt. I then went to a different surgeon as we had different insurance, and we discussed the decompression again. I was for it as it was a complete success the first time. At this point, I'm 32 years old, we did the surgery which he was only able to nick the nerve. This had relieved the more severe pain. Every so often I felt a little pain when I would wash my face, but I could live with this. Now, here it is, one and a half years after the second surgery, and the attacks are back on the left side of my face. I feel I am at a loss for what to do. I have an appointment with the surgeon in one week to talk about the gamma knife, I don't know where to go from here. People that have never had Trigeminal Neuralgia, can't even begin to imagine the pain we feel. Name: Deb 1992, I was in a dentists chair having all 4 wisdom teeth removed as they were badly infected & empacted. Once they got as much as they could out of my jaw they told me that they would have to leave some root ends behind (they had 'hooks' on them & they couldn't risk drilling any further) I was told they would 'disolve' over time.....I believed that. I then was put on anti-biotics (penicillan) & pain killers (panadeine-forte) Soon I noticed infection and then the rollercoaster ride was on. I had my tonsils out / sinuses scrapped within 4 months of having my wisdom teeth done, reoccuring infections, more antibiotics(penicillan) & pain killers (panadeine-forte). One morning I woke & had a huge headache & layed in bed until a knock at the door made me get up. My friend was shocked a my appearance as my left eye & surrounding face was very inflamed, I went to the doctor had a CAT scan and was told it was 'Chronic Sinus' more anti-biotics(penicillan) & pain killers (panadeine-forte). January 1997 I found out I was pregnant and I stopped taking 'over the counter' pain med. for my annoying 'headaches'. I was in agony throughout my pregnancy & my nose got extremely stuffy (which I was told was normal in pregnancy so I didn't worry about it). After the birth of my little girl I suffered Chronic pain radiating from my ear to my temple, nose, upper jaw & eye. My 'stuffy' nose completely blocked on the left side & I could no longer breathe through my left nostril. I was very scared & I went to the local GP who sent me for another CAT scan, it came back normal but he prescribed anti-biotics anyhow...this time I had an allergic reaction to penicillan. I thought that it had to be a dental so I went to the dentist & begged him to do something, I told him it was all of my teeth that hurt along the top jaw on the left hand side. He started probing & then 3 root canals, 2 extractions & a referal to an Oral surgeon who removed roots from the 2 extractions & the roots from 1992 under intravenous sedation occurred. I was then referred to a Professor who was adament it was a muscle spam & placed me on anti-depressants (dothep)& told me to continue on pain killers(capadex)which didn't help. I tried accupunture, massage, aromatheropy nothing worked, I felt there was no where I could go to next. My husband & daughter were suffering, my jobs, friendships "IT" had control. Taking up to 10 Capadex a day & popping valium in my mouth at night just so I could get 2 hours solid sleep, I thought of suicide many times, if not for my family I would have done it, but I realised that even in my drugged hazy state they needed me. By chance my company put on a new receptionist who I became close to, I told her of my "secret" & she told me her mother-in-law was a Sister at a nearby hospital. After a few phone calls she suggested I see a certain doctor. HE BELIEVED ME!! Even better he genuinely wanted to help me, I was diagnosed as having A-Typical Trigeminal Neuralgia. Although I am still taking a hefty amount of pain killers & valium, I have been put on a low dosage of Tegretol which I hope will ease the pain, I have a little bit of hope & I finally have someone who really wants to help me. This pain is indescribable, unless you suffer this, it is hard to imagine. I thank god for this site, it has shown me I am not alone & best of all - I'm not crazy! Name: "franksie" I was diagnosed with TN May 2001... After suffering with this dreadful pain for 5 days, I rang my GP, she advised me that I may have shingles..but after a visit to her I was told that I had Neuralgia...She said that she would start me on herbal medicine...namely Magnesim and S33 to try and settle down the pain..she said that if this did not help then I would have to see a neurologist..the rest is history... I went to the neurologist who said that there was 3 tablets that I could try before I would have to have surgery..anyway I was put on Tegratol which nearly drove me crazy with so many side effects, I was then put on Dilanton which also had side effects...namely hives and rashes..So off I went again to see him and was put on the Lamictal..this has had some results, but I also decided to try acupuncture...I am having some relief...I have TN on the right side of the face namely round the eye, forehead and head..as a result I have not been able to have my hair cut, and I am not able to chew on anythi | |||||||||||||||||||||||||||||||||||
