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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: Elizabeth I had surgery to remove a salivary gland that had a benign tumor back in June. I should probably back up a bit. This tumor started about the size of a pea, first noticed in the late 80's/early 90's. It gradually grew bigger & would experience intermittent pain with it. Various oral activities would aggravate it. Had a CT scan in early 2000, finding was that the gland had a clogged duct. Was told to suck lemons. It continued to grow. I could see it when I looked in the mirror, it looked to be the size of a plum. Others were noticing it as well. Finally went to an ENT after another CT picked up the tumor. She did a biopsy. When I went for the biopsy results, I explained to her that I had had a lot of sharp pain with it since the biopsy. This was disregarded & nothing was given for the pain. My husband even tried to explain that the biopsy had aggravated it, we were still shrugged off & more or less told it was normal. Surgery was set up. Went for 2 follow-ups after the surgery. She was proud of herself saying there was no nerve damge since I could smile. I told her about the severe pain I was having, extending from the surgical site into the ear canal (like severe earaches)into the temple with throbbing pain. She prescribed Naprocen (which I cannot take)stating that she could not prescribe anything stronger because it had been 2 weeks after the surgery. (B.S.!!) A few weeks later, I started noticing that ANY cold air made it worse, sinus infections (which I'm prone to) made it unbearable. Then, I started experiencing dizziness, blacking out. I felt like I was floating, even if I were lying down. I even got down on the floor to try to keep from feeling like I was falling, to no avail. I called her office & the on-call doctor told me that the pain & dizziness couldn't be related to the surgery because it had been a few weeks. I asked him what to do, he had no answers. I asked if I should take a Dramamine & Phenergan. He couldn't tell me so I hung up & did just that. It didn't help. About a week later, I started having "charley horses" right in the incision. When this would happen, it was like my face would freeze or lock-down in whatever position it was in. The pain was excruciating, almost as if sticking a knifeblade into the incision. It was worse if I yawned. I noticed that certain facial movements would cause it, some movements being involuntary. I called her office. The nurse talked with my ENT, came back & again told me that this had nothing to do with the surgery. (Awfully strange that these things never happened before the biopsy & surgery - which I told her). They swore by it, set me an appointment for 3 weeks later, & then got an earful from me. I asked if they were so afraid of lawsuits that they decide not to give proper follow up care after surgeries. It is obvious that they don't want to admit that something went wrong. I told her to let the doctor know that she is full of it & that I no longer trust her because I know my body & when these problems erupted. Don't give me the BS about it not being surgery related. Needless to say, I didn't keep that appt. I saw my family doctor a bit later (November) & told her about the problems & why I refuse to see the ENT. She prescribed Neurontin. I was on it for 3 days. On the 2nd day, I was so depressed that if you looked at me funny I was in tears. I've heard about the problems with Neurontin & Bi-polar patients. The thing is, I am not bi-polar; yet, it did make me severely depressed & somewhat suicidal. I began to think the depression was caused by the medication (on the 2nd day). I took it again on the 3rd day & cried all day about any & everything. Neurontin went down the toilet that evening. It took it 2 weeks to completely get out of my system. I haven't seen my family doctor about it since she prescribed it. I think that she never should have given something with such publicized warnings to begin with (she had also tried to give my husband Vioxx samples). So, another doctor on our "NO WAY IN HADES" list. On Christmas Eve, I started feeling strange - a headache with electrical sensations extending from the surgery area, under my chin & creepin up the left side of my head. There is also dizziness & nausea with it. On Monday, while making our bed, This would happen when I turned my head certain ways. I would get that electrical shock cramp in the neck at the site & it would travel to the other side up my neck to my head. I'm a migraine sufferer, but these electric shock headaches that won't go away are a different animal. I forgot to mention that as I first started having problems, the numbness was gradually worsening & spreading. I can feel pressure when applied to my neck, cheek, & lips, but true feeling is not there. After the surgery, I was only numb on that side around the site & up the right cheek. Now, it is those areas, my lips, under my chin & spreading to the other side of my face. I'm not asking for a diagnosis here, but I need a few ideas as to what is going on so that I can be more informed when I find a doctor who isn't stuck on themselves & afraid of liability. I know I'm not crazy, this all started after the biopsy & surgery. I need relief, but after the Neurontin experience, I'm afraid to try meds that I'm not familiar with. I now that Oxycontin, Vicodin, etc., work & I have no side effects with them, but doctors are so afraid to prescribe them because of idiotic prescription drug abusers. They're making it so that people who really need it can't get it because we're all being put down at their level. If anyone has any ideas, comments, suggestions, please email me at Wiccattywampus@aol.com. Is this a form of neuralgia or am I barking up the wrong tree? And in the opinions of those who know more (THE SUFFERERS), am I right in believing that it is surgery related? The tumor on the salivary gland was quite deep. Thanks for any assistance on this & I hope that everyone finds the solutions that you are so desperately seeking. Good luck. Name:
"Lorie" The pain started in the orbit around the right eye, ophthalmological exams detect nothing wrong with the eye or optical nerve. A neurologist states there is no cause he can find for the pain. The pain has progressed to the point that the whole right side of my face is in constant pain, sometimes slight, somethimes excruciating. I've about decided to give up. Can anyone help with comments about a similar situation. How do you get a 'true' diagnosis? Where do I go from here? I would really like to have your feedback. Lorie Name: Dave Folks, I have shared this story in the past. Facial injury caused by NAVY dental practices. That is of little consequence. What is important is this, it has been 12 years of hell, and it is over as of tonight. I am so fed up with the pain and the misery of being in pain. I have suffered, my family has suffered and it is over. I am very very sick of this. No doctor has even started to help. I go from being stoned and non functional to 'out of my mind pain'. I am gone. Thanks for listening. Dave Name: Rochelle I just made a posting earlier. I have been to the ER as my face was so painful. I have been diagnosed with Trigeminal Neuralgia. I am awaiting to get a MRI done, and have a referral started for a neurologist. Been prescribed Dilantin but can't tolerate it. I guess like a diabetic on insulin, it is finding the treatment that will help control the symptoms. "You can't change the direction of the wind, but you can adjust the sails" Name: Joseph C. there will be many people out there who know the depths of despair that facial pain can cause. it has led me to seriously think whether life is worth it. my pain started 20 years ago. it is an acute burning sensation near to both corners of the mouth. Often there is slight swelling and a small red patch on one side. i describe the sensation as a red hot knife placed against the skin. It is made worse by stress, tiredness, etc. Bouts of associated depression make it worse. I have taken many form of medication, all to know avail. the last was a painkiller that sent me off to sleep. i would like to talk with someone who ahs had such a pain and for whom some form of medication may have worked. currently, i am thinking of talking to someone about pain blocks and slow release morphine. twenty years is way enough. nothing so far has worked. i have tried vit b12 injection, vitamin c injections, capsaicin, various pills used for epilepsy etc. has anything worked for anyone out there?? please help, richard ps sorry about the spelling - spell chack has gone walkabout.. Name: cindy im sorry.im so new here but so desperate! i started several months ago with a very sensitive tooth.once the pain became severe,i decided to go to the dentist but was told the tooth and jaw were fine! he treated me for a possible sinus infection despite i didnt think it could be it.the tooth is where the pain starts or so itseems.it has since now become almost unbearable..i nver heard of any facil neuralgias and so doubted the dentist.so im beginning to research this as my doctor treated me as well for a sinus infection and it didnt help and in fact,its worse and she says this is what it is.right now the tooth is tolerable pain but at anytime for no reason it flares into the gum and cheek bone and is so excruitating i believe death is preferable! but all i read says it only lasts for a short time.then abates.i refer to it like a charley horse.it hits so hard when it hits.i cant even think butthen it goes down soem but im left with a terrible aching in my left jaw and still a very sore tooth.now it also seems other teeth hurt when its bad.i cant eat or drink when its here because it can bring it on.its freezing here and the cold aggrevates it to the point i dont want to go outside.i talk alot but sure have to shut up when its starting up as it brings it on.yesterday,it lasted all day and all i could do is stay in bed in misery.so i calleed the doc and she says lets try tegetrol.im grateful if this is it i didnt insist they pull the tooth or spend 1000s at the dentist as im so sure its the cause but i also understand abcesses or dental problems dont jsut go away.i do have times where its only miserable but tolerable.but im still having trouble believing its neuralgia as i jsut doesnt seem to fit into the picture i read about it.not completely. what id liek to kno is does it come with a very sensitive tooth that when touch just right can start it?its where im blocking at the cause.the tootis sore so how can it not be that?readign these posts dont give me much hope at all.i kno u all realize how debilitating this is and frankly,i dont want it.also,my left side of my mouth feels so funny on the bad days.almost numb like or like i cant control it though theres no obvious drooping.i havent read much about any nerve involvement like that.but when im not too bad,its not so bad.maybe i havent found a good site to read on but i thought going to thsoe who suffer from this could get me some answers. last,i have to avoid narcotics even if they do help.it doesnt sound like they do very much from thses posts.so im wondering what helps most that i can do.aleve and excedrin dont help much and sinus meds havent either.do u put heat or cold to it?hot showers?i just dont kno.ive tried a few things but what helps best?are there any over the counter meds that help the best anyone uses?what do u do about the weather?what about car rides?does anyone have loud noises irritate it?i was a meeting tonite where a man talked so close to em that triggered a shooting pain.i almost moved from enar him and this made little sense to me!what do u do about eating and drinking?im like everyone and could lose a few lbs although weight wise,im ok but i cant eat things i have to chew,even on the right side of my mouthbut even a straw hurts to suck through.im just so confused and would like any advice. im very sorry for all u to have to sffer with this.i think sometimes im crazy and i want all my family to kno how bad it is yet i dotn wnat it to be bad but so lsot about is this it or what can i do.r there exrays that can prove it?would cutting the nerve,even at the risk of paralysis, relieve the pain? id appreciate anyone who would talk to me about this.im scared and already tired with this.im very angry and at the why me stage.but im also willign to ttake any suggestions. thanks and i hope all u the best! cindy Name: Emma H. Name:
Rochelle S. July 2004, had bad headache neck pain, etc. brushed my teeth, my face went numb and paralyzed feeling on the right side. went to ER, doc said Bells' palsy? 5th Nerve mononeuropathy?? I am diabetic. Tongue was numb, could not eat. In September "bell's" almost cleared, had full feeling in ear, Still have this, Doc said it was TMJ? I do not grind my teeth??? I had a CT scan Dec 1st - was normal. As of now, I am now getting face pain, numbness in the lower cheek/jaw, eye pain, eye muscle flare up, shooting pains in my face, exposure to cold air will trigger this immensely, eating will trigger "twitches". Feels like i have been to the dentist, toothaches.. tongue does numb.. everyday is a different story in symptoms. What is going on with me? What should I be telling my doctor. I do have carpal tunnel, rotator cuff tendinitis, and nerve problems I feel going into my neck, no definitive diagnosis. I do work as a data entry clerk full time. Help me, what is wrong with me? Is this Bell's or TN? Why doesn't anyone know how help this? Name: Greg Today I was diagnosed with TN or Tic Doloreux. I am 39 yrs young. I guess in was inevetable that I get it as my Father had it, his Mother had it. But I can't get a doctor to tell me weather it's genetic or not. Does anyone know if there is any evidence of this being hereditary? I've had this pain for 2 yrs or so, on and off, but I guess I didn't want to admit that it was Tic. I had a wisdom tooth pulled thinking that was my problem for the electrical shock type pain. That only seemed to worsen the problem after the gum healed. I am taking the drug oxcarbazepine, but I just started it, so I don't know if it will give me any relief to this intense pain! I would like to find out about more treatments out there! I remember my Dad in such pain he would have tears coming down his face with no expression. He had been to several Doctors and Specialist's for years with no relief. This was back in the 70's and 80's. He finally found a Doctor that treated him with injections around the late 80's and he had some relief! He still lives with it today, but it's not as bad as it was. He has flare ups every now and again. I remember him saying to me, "I hope you don't get this son". I haven't told him yet, but I will. I just hope this treatment works and that there is more options nowadays than there were back then! Thanks for reading my story. Greg. Name: Roxanne I'm 43 years old and I've been suffering with facial/mouth pain for over three years. It started with a sensation like I had a popcorn kernel stuck in between two teeth (#13 & 14 upper left jaw) and when nothing showed up in an x-ray my regular dentist sent me to an Endodontist for a root canal (it was a five hour procedure and wasn't even completed!) and that's when it started...three root-canals, on #13, #14 & 15 teeth,which included new crowns, treatment for periodontial disease (which was later found that I didn't have it after spending over $1,000 out of pocket to treat it!) periodontial surgery with infected bone and a bone graft, another crown, an Endodontist who said I needed psychiactric help because "it was all in my head!". Then I thought maybe it was TMJ, but I had to see my MD to get a referral to an ENT. The ENT diagnosed me with TMJ & prescribed a night guard (this was found to be a false diagnosis), later I had a panoramic x-ray that disclosed no TMJ but also couldn't find the problem, then finally another referral to another Endodontist who finally said "it's not a dental issue" you need to see an Oral facial specialist. After seeing the Oral Facial specialist I received therapy and was put on medication (Baclofen & Naproxen- a muscle relaxer and anti-inflammatory) and finally started getting some relief. The Oralfacial specialist diagnosed me with muscle and nerve damage but also requested an MRI with my MD but the insurance company wouldn't allow it, and then finally a referral to a Neurologist who allowed for the MRI (thankfully the request to the Neurologist, MRI request and MRI were all done within a week). My specialist put me on Neurontin a week ago (300 mg. once at night); the Neurologist wanted me to increase it to 3 x a day but the specialist didn't agree. I've been tracking my pain level along with stress and today is the first day in three years that I actually feel "NORMAL"-PAIN FREE! I know it may not last so I'm thoroughly enjoying it. I lived with all of this pain while working a full-time job 10-12 hours a day 90% of it being on the telephone. My family has been very supportive and I've had a lot of prayers. I'm very thankful that the MRI didn't show a brain tumor, aneurism or problem with a blood vessel (as the specialist and Neurologist were concerned about)...waiting for the results were the hardest. They finally said it was facial neuralgia and I believe it was caused by the first root canal. I read some other stories and the thing that I realize is that my pain was horrible, but I know there are others who suffer more than me and I feel for them. The pain I have is a tight, constant squeezing sensation and pain in between my teeth (which is why all the dental work was done) no one could pinpoint where the pain was coming from. I never had pain while I was sleeping and I'm grateful for that! I've spent thousands of dollars for unnecessary root canals and dental procedures over and above my insurance coverage. Thankfully I never had any of my teeth pulled and I know of people who have, one at a time. I even called a dentist who told me about a patient with the same pain in the same teeth who had pulled her teeth to get her to my specialist (hopefully he gave her the information!). If anyone has experienced or is experiencing something similar please write to me. I had tried to find information about facial pain on the internet before I knew what it was officially called I could only find TMJ information. I'm so thankful that I found my specialist and for this website. It has been very helpful. There is hope! Thank you for your time. Roxanne Name: "daintydi" I went through months of right sided facial pain. I was on neurontin and trilemptel which proved to be innefective. I went from a pcp to a ent to a pain clinic and fina;;y a mri was done. I had a pituitary tumor that was impinging on the trigeminal nerve. Following surgery may pain is completely gone. Insist on an MRI with gado for a difinitive diagnosis. Name: Susan It started 5 1/2 years ago. I have read several emails and see my symptoms in just about every one I read. I have been to Chiropractors, Nuerologists, Dentists, Medical doctors and an endodontist. We have redone a root canal and pulled a wisdom tooth. I have had brain MRI, Cat Scans, blood work, you name it. I cannot even locate a doctor in the Fort Worth Texas area who is willing to diagnose me. My Medical doctor has now referred me to a psychiatrist who is treating me for depression. My pain was so bad at one time that I took too many painkillers over the course of 30 days. As a result of that my General Practitioner won't prescribed enough for me to have on a daily basis. We went through several medications before discovering this one that helped to subside the pain. However, this medicine is one that most doctors won't prescribe at all. Now I am virtually pain free for 1 week and then am in pain for 1 week. It is so difficult to function on a day to day basis. I have always been healthy and active and am now depressed and frustrated. If any of you know a doctor in the Fort Worth Texas area that may actually diagnose me, please respond to this email. Name: Kevin Let me start by saying that I have read a good number of the personal stories here. I am amazed by the lack of information that some people have been given who suffer from TN. But I know the feeling of being in the dark, it took me the better part of 10 years to find a real solution to treat this thing and I was literally ready to commit suicide when I finally found real help. I am 38 years old and have been dealing with tic pain/TN off and on for the last 10 years. When it started it was an occasional jolt of searing pain on the left side of my face that lasted about 3 to 4 seconds and disappeared after about 3 weeks with no treatment. 3 years later when driving on vacation it hit me again like sledge hammer. It felt a hundred times worse than 3 years before. I tried everything from accupuncture to herbs and chiropractic and nothing worked. I finally went to the emergency room and was diagnosed with Trigeminal Neuralgia or Tic doloreaux. After being refered to a neurologist he did an MRI and it came out clean. He put me on Tegretol and that seemed to put my symptoms under control. After 4 months all of my symptoms disappeared all together again. I was on about 90mg of tegretol a day at the time and weaned off of it and had no pain again for another 5 years. In June of 2003 it came back again and it again felt atleast a hundred times worse again. The pain was so excruciating this time I literally wanted to die every time I had an attack. The attacks would last for up to 10 to 20 minutes and all I could do is sob and moan until it subsided. I went to see a neurologist again but this time it took massive amounts of tegretol and also neurontin to quell the pain attacks. I was taking 1800mg of tegretol and 3600mg of neurontin with a few other meds to control an increase in heartrate and BP. After about 4 months on the meds nothing was happening to the underlying symptoms.They were under control for the most part but I would still have attacks about once a week and I was so stoned on the medication I couldn't work or do much of anything except lay in bed. I finally asked to be refered to a neurosurgeon and thats when the musical doctors started. The first 4 surgeons I met with all had solutions to help but they didnt seem to perform the surgeries that would help. Finally after 7 months of this I managed to get into the University of Washington Neurosurgery Dept. I met with Dr. John Loeser who has been treating TN surgically for 30 years. We discussed the most likely cause as being a small blood vessel that touches the trigeminal nerve ganglion and damages a few nerve cells every so often and the 2 real options to help treat my condition. When I say my condition I mean options for me personally. One was microvascular decompression which is an open brain procedure and that scared me a bit due to my sister having had a similar procedure done to remove a acoustic neuroma but was botched by an under qualified doctor.The other is called Balloon gangliolysis which is a procedure where they insert a large needle with a small balloon inside it through a nerve canal in the skull and open the small balloon next to the trigeminal ganglion. The balloon damages the ganglion just enough that the TN pain is almost immediately aleviated. I was in and out of the hospital in on day with no over nite stay. There is some minor numbness still in my face,about 10-15%, but I have full function of the muscles and have 100% motor function. This procedure should last from about a year to 5 years, and can be repeated as often as is required. Although, this and every other surgical treatment for TN is temporary, there is no cure that anyone seems to have found yet, I will probably opt for microvascular decomression the next time it hits just because there is a much longer period of being pain free, anywhere from 10 years and longer. In the years I have been dealing with this I have discovered that neurologists and neurosurgeons almost never see eye to eye about this. Neurologists are pretty much of the mind that this can always be treated successfully with medications. While medication is the first step it is not the only one to look at and Tegretol can eventually cause aplastic anemia which requires a bone marrow transplant. But you have to be on toxic doses for a while before that hits or so I am told. Neurosurgeons who specialize in this part of the brain seem to have a pretty darn good track record with the 2 surgeries I that I discussed with Dr. Loeser. And older patients seem to have much success with "Gamma Knife" Radio surgery. But let me make clear that although I have had amazing success with the Balloon Gangliolysis people need to do their homework when seeking a surgical solution. I owe an extreme debt of gratitude to the Neurosurgery staff at the University of Washington Medical Center. I believe they have saved my life for the most part. But again this is how I chose to take control of my health to find a solution. Don't be afraid to look at every single option that is currently available. Even something as simple as a dietary change can make a huge difference. I hope this story about my personal fight with this can help somebody out there. Just don't give up hope, there is light at the end of the tunnel. Name: john s, It started with metal penetrating my car windscreen from a passing lorry broken Zygona, temple smashed, cheekbone disintegrated a small break on my nose and two small breaks on my jaw the last two were allowed to heal themselves. I went into trauma on the operating table and nearly died. they told me they could only put one plate across the zygona as there was too many broken and they had nothing to anchor the plates to. After a few weeks the plate in my head sheared into two and i asked for it to be removed, they didn't want to at first but i persisted. They told me they would only do it on a day release basis. Thats the way they did it. I had been really sufering from the two pieces as it felt like a tuning fork in my head. I had noticed a very sharp pain not long after the accident which tended to go away at intervals. each time it reapeared it was worse i went to the doctors and he prescribed tegretol straight away. He told me to take it easy at first but if i couldn't bare the pain to increase the dosage up to 600mg. A few months have gone by and i have found if i mix tegretol and a couple of cans of lager i can usually bare it. This is a funny problem sometimes the pain is really hurting and it just disapears as though it never existed. I have had some funny experiences, my eyes pupils enlarge or pinprick both at the same time, and i tend to get an aura, where the whole world distorts, i'm usually sick to my stomach. I try to spend time de-stressing myself and find some relief when i paint and take my mind off the pain when it strikes. Just lately parts of my teeth on the right side have started dropping out hopefully this is a consequence of the accident i had two years ago. My teeth have started hurting where the enamal is dropping away and where the filling is dropping out. I'm away to have a couple of cans! Name: Mark Hello, about two years ago i woke up one night with severe pain in my my left cheek inside my mouth. I had never had or experienced such pain. I got up took some advil, it helped, i also rinsed with antiseptic and that helped. about three nights later the same thing this time i had most of it on the outside of my face and behind my left eye.took advil and it helped. this started occurring weekly and finally went to Dr. said i had two bad teeth( i knew that) that was the problem. Said my teeth per say did not hurt. went for cat scan, MRI, ear specialist, during this time the attacks were random sometimes pain free for days then with a vengenance it came back went to the ER 4 times and was given morphne and demerol. That helped. Finally a DR prescribed Tegretrol and now I take 1600 mg per day 4 pills. I started that in july of 2002 and since then i have had what i call spasms of Non - pain periodically. Yes i had the teeth pulled LOL Two weeks ago all of a sudden it came back BAD and was so bad.... Dr gave me Plain Tegetrol to take when i had attacks, i also took three advil and a hot bath. I used to get "panic attacks" and that made it worse so i tried the bath trick. As of recently i have been pain free. Please feel freee to email me. It would be nice to share and support others and exchange information.. I wish you all pain free mark Name: Kate A. I watched my brilliant beautiful daughter go from being the top student in the school, star of the school play to a huddling mass..in tears..unable to attend school or hold down a job. She contacted chicken pox and then bell's palsy..5 years later after a minor flare up of bell's palsy she developed incapacitating headaches which left her pale and black eyed. Although the pain dropped to bearable levels for short periods of time, she was never without pain. Because of a family history of migraine, the bell's palsy connection wasn't made until after 5 years of treatment with every migraine drug known and every new one that hit the market, every opiate, every painkiller, every vascular constrictor, bloodpressure meds (they made her worse!)..eeg's, MRI's, CAT scans..you name it she had it.. Finally we began looking into other possibilities and looked at the bell's palsy connection to neuralgia..We convinced our family doctor to try Gabapentin as a possible relief. It began to reduce her pain levels so that she could function somewhat. Over a 4 years period, she had to increase the dosage from 400 mg/day to 1200 mg/daily. Then it stopped working entirely. She reverted to the same invalid she had been years ago. ...We went hunting again and found that there has been good results with lidoderm patches and gabapentin..so despite our doctors insistance that these are migraines and that we should try the latest and greatest at $100 a pill...we tried the only lidocaine patches available in Canada..they are over the counter and half the strength of the ones used in the trials..(EMLA is the brand name here) We read about the side effects..minimal..less that .01% of the meds absorbed to blood stream..and as she is engaged this is a plus (gabapentin is not recommended for pregnantwomen.) The pain is now at tolerable levels with some days pain free.. We have been trying to duplicate the study conditions..up to 4 patches for 12 hours daily. Next step will be to see what happens if after breaking the pain cycle in the nerves we can wean her off the gabapentin and use just the patches..we are hopeful. She wants children and current meds will not allow her to have them. I would strongly recommend any one with chronic pain to look up the pain studies on the net and take them to their doctors (lidoderm or lidocaine and chronic pain in a search engine will find them) ..there are few if no side effects from using the patches and they seem to be a godsend. Name: Tyrel I am writing this story on behalf of my dad who is diagnosed with painful burden. About 2 years ago my dad bit his tongue when he was sick with strep throut and the strep virus entered into the trigeminal nerve and infected it. A few months went by before any pain started. It first started as small jolts of pain then the pain grew to be so bad that he would practically rip his bed sheets apart. He finally got in to see the doctors and they weren't sure of what it was some said it might be cancer some said that it was just a minor infection in the tongue. Well the pain never left so he went back to the doctors and they ran more test and after about a year or so the doctors finally diagnosed it as TN. And told him that there is no cure and that there is a high suicide rate with the patients that have TN. When my dad heard this he pretty much just gave up on finding something that can get rid of the pain. This is why I am writing this story and not my Dad. I have been searching the internet high and low for anything that could possibly help my dad in any way. I have talked to specialist and they just turned their backs and walk away from my dads case. They put my dad on Tegretol but it doesn't do anything. Sometimes I think he is going to overdose on it. If there is anything out there that you know of that could help my dad in any way, please let me know. I want to see my dad happy and normal again. Name:
"Owen" The last week of july 2004,i was eating ribs at a restaurant. when i bit down i was hit with a sharp, shocking electrical pain in the left side of my face. it started at my left front tooth and traveled upward through my nose, behind my left eye and ended at the top of my head. I had never before experienced a pain of this kind. later on the electrical shock escalated into an "episode" which resulted in excruciating pain in the same areas lasting from two minutes to ten minutes before the pain would go away. I went to see my gp and he referred me to a neurologist's help the pain he prescribed carbamazepin and hydroco/apap 10.the meds bound me up immediately, and left me feeling depressed and tired all the time but they did control the pain somewhat. I was still having episodes whenever i tried to eat, drink or suddenly move my head.i never knew when an episode would appear, so i had to quit driving or leaving home for any reason other than drs. appointments and then with a designated driver. a month and a half later i saw a neurologist who sent me for a cat scan. after the cat scan, which was inconclusive, he sent me for an mri of my head and sinuses. the mri didn't indicate the cause of the problem. my neurologist changed my meds to tryleptol and topomax to try to alleviate the pain and relieve the constipation. after several changes in the dosages, the pain was in better control, the pain was not as bad and the duration of the episodes was lessened. the constipation, however, remained. The neurologist then referred me to a neurosurgeon as a candidate for surgery. in between the waiting times to see the neurologist and the neurosurgeon i have pursued other methods of treatment. I took acupuncture treatments to no avail. I consulted a chiropractor but he couldn't tell me for certain that he could help me,but recommended eighteen treatments to try. then a good friend recommended another chiropractor who used different treatment methods than one normally sees. I was highly sceptical, but after my friend told me about some of the people that had received healing from him, I consented to try his treatment to relieve the tn.dr Doan explained to me that he used the gonstead method of treatment only, and he was confident he could help me in just a few treatments.i have since received three treatments, have gradually quit taking meds, and the pain is gone except for a little sensation at times. praise god!!! Name: Michelle This may be lengthy, but I want to try to get the basic facts out here in the hopes that someone will be able to help me. I also hope that my story will be able to help someone else out there. I am 37 years old, female and this hell began about 20 months ago. Here goes . . . In March of 2003, I began to have pain that seemed to come from tooth no. 13 when the filling on the tooth fell off. This tooth is located upper left side of my mouth. (It is the third tooth from the left front tooth). I had broken the tooth nine years earlier and my dentist packed a white filling material on/in the tooth. The filling had fallen out previously on a few occasions with no pain, and I simply had it refilled. However, this last time it fell out in 3/03, I was in pain. It felt like a toothache. My dentist put a crown on the tooth and told me that the pain would go away once the permanent crown was placed on the tooth. This was not the case and the pain has persisted through today. A brief description of the pain: Left-sided facial pain along the bottom of the cheek bone. It is constant and best described as crushing, aching, pressure, pulling, cramping, splitting with burning. The pain seems to come from tooth 13, but not always, and moves along the left cheekbone and sometimes into the left eye area. Sometimes, it feels like all of my teeth from no. 13 back are affected. The pain is deep and difficult, if not impossible to pinpoint. I have no "sore" spots or trigger points on my face, cheek or gums. The teeth are not sensitive to cold, heat or tapping. There is no increased pain with chewing, talking, brushing teeth, touching of the face, etc. There are no "electrical shocks" of pain, like in traditional TN, rahter, the pain is constant. I do not have popping in the jaw or wearing of the teeth which is usually seen with TMJ disorders. I do not have any relief from any certain position, i.e. lying down or standing, etc. I have not had shingles or any other viral infection that I know of. With that being said, I will give a little medical history that may be relevant. In 1988, I had a motor vehicle accident and I broke my TMJs on both sides. I had surgery on the right side to remove bone fragment from the joint. After recovery, I had no problems with joint pain. Of course, as a result of this accident, my bite is off a bit and I have limited range of motion, but no joint pain. In 1991, I had sinus surgery to remove polyps due to allergies. After recovery from this surgery, I had no pain. My septum was also straigtened in this surgery. In 1997, I had a toothache in the tooth directly below tooth no. 13 and had a root canal. It appeared to take care of the problem, but from time to time I get a dull ache in the lower jaw in the area of this tooth. It seems that this "new" pain began with the tooth problem and not these other issues, but I wanted to put them out there in case someone had any insight aobut this. Anyway, after my dentist put the permanent crown on tooth no. 13, the pain persisted and I returned to the dentist. X-rays showed no abnormalities and he did not recommend a root canal. At this time, I was taking over the counter meds, Advil and Tylenol. This took the pain away for four to six hours at a time, but it always returned. I still thought this was just a toothache. Since the OTC meds were working, I put off going to see another doctor. Frankly, I didn't know where to go. Eventually in September of 2003, I went to an endodontist. The endodontist took x-rays and said the tooth was fine. However, due to the pain, he did a root canal. This was excruciating. I had a root canal previoulsy on the lower tooth and I knew that this extreme pain was not normal. The pain did not go away after the root canal and he performed another root canal on tooth no. 13. Still no change. I went through a course of two different antibiotics, specifically Ceflex and a Z pack and a course of steroids. This did not help, but I did return to "pre-root canal pain." However, the pain was more difficult to treat with OTC meds. I had a second opinion from another endodontist and he said the root canal was fine and that the tooth was OK and that it was probably a "muscular" problem. His recommendation was heat alternating with cold packs. Yeah, right. This, of course, did not work. I spoke to another dentist who suggested that I may have a "hairline" fracture in the root of this tooth. He looked at the x-ray, but did not see anything. I asked my regular dentist about this and he said that there was no evidence of a fracture on the x-ray. He indicated that there would be some changes on the x-ray if there were a hairline fracture and that the tooth would be extremely sore and sensitive to tapping, which it was not. Thus, he opined that there was no fracture in the root. Having exhausted the "dental route", I went to see my primary care physician who was perplexed. He ordered a CT scan, which showed a cyst in the left sinus and blockage from the left sinus. He prescribed nasal spray and another course of antibiotics, Augmentin. This did not help. He referred me to a neurologist, who diagnosed me with "atypical face pain" and said that there was nothing that he could do for me. He told me that I was extremely "unlucky" and gave me a prescription for Neurontin with about 5 refills. He washed his hands of me and shooed me out of his office. He told me that I may want to see an oral surgeon or go to the local university dental school for an evaluation. The oral surgeon focused on the fact that I had previously broken my jaw and claimed that I had TMD (a TMJ disorder). He told me to go back to my dentist and to have a splint made to wear as much as possible. My dentist disagreed with this diagnosis, but made the splint anyway. Dentist said that I had no TMJ symptoms, no wearing of teeth, no grinding, etc. Splint, of course, did not work. Went to dental school and the head of the school determined that I did not have TMJ problems. This decision resulted from nerve blocks and a complete numbing of the left TMJ. I was shot up with novacain from my nose to my ear and in the palate, but he could not locate the source of the pain. He referred me to the university endodontist and suggested that I may have a surgery where the remove the top of the root on the tooth. (I forgot the technical name). I went to see the endodontist and she said that she wanted me to see an ENT to make sure the sinus was not cause of pain. Went to ENT who said that the cyst in my sinus was not causing the pain. Told me good luck and to keep him posted on my condition. Yeah, right. In the meantime, I had accupuncutre by an internist, that did not work. He did blood work and said liver suffering from OTC meds and prescribed Celebrex. Celebrex seems to work, but I do get break through pain and still have to take Advil and Tylenol p.m. to sleep. Went to pain management clinic and they wanted to do injections, but without knowing much about it, I decided to put that off for the time being. Went to another oral surgeon and he has referred me to another ENT to look at the sinuses again. The ENT looked at my CT scan and wanted to see me. I have little hope, because MANY doctors, including two ENTs have looked at the CT scan and have ruled out the sinuses as the source of the pain. Anyway, I will go to see him. In the meantime, still in pain. I am also seeing a chiropractor, with no help. After a year and a half, it is finally taking a toll on me, mentally, physically and financially. Although I have insurance, the dental work and many of the doctors listed above are not covered. I am a newly wed (10/030 and got married in the middle of this hell. I am an attorney and my job is suffering due to the multiple doctors visits and pain. As I said, I am 37 and my husband and I would like to have kids. I tried to get off all meds, but I cannot function without them. I could not imagine going for a year or so without Advil or Celebrex. I don't think I would survive. I feel like my life is falling apart. I already told my husband that I thought he should leave me and start a normal life with someone he could have a family with. He refused to do this, but I don't think that this is fair to him. I do not know what I did to deserve this. I have only recently begun to realize that I may have to live with this forever. I range from anger, fear, despair, isolation, sadness. If anyone has any advise, please please please email me. My specific questions are: 1. Have injections helped anyone? If so, what kind and where? 2. Are there any pain meds that can be taken during pregnancy? Has anyone with atypical face pain successfully gone through a pregnancy? If so, how did you do it? 3. Have any surgeries helped anyone with atypical face pain? Are there any doctors out there who will try an invasive and permanent treatment for this? Am I relegated to taking meds forever? 4. Finally, is there anyone out there in the New Orleans area who has seen any doctors who have listed and helped with this disease? Is there any one in the N.O. area who would like to start some type of group to meet and discuss our situations and keep one another updated on meds, physicians? If so, please let me know. If anyone took the time to read this rambling, I thank you. I feel for everyone who has written in and everyone with this awful disease/condition. Name:
Laura M. I am updating my success story because so many of you have emailed me with questions. I have been PAIN free since 2000. I did not take drugs, have surgery or trade my soul. I did it with a COMBINATION of Chiropractic and Acupuncture. It is funny how everyone read my 2000 entry and emailed me about the Acupuncture and no one about the chiropractic. You can try Acupuncture all you want but without the Chiropractic, I don’t believe it will work. You see, the acupuncture can relieve the pain but the chiropractic will CORRECT the problem. If it is a NERVE issue, then it is a chiropractic issue. They are doctors of the nerves which are many times being pressured or pinched by the spine which causes problems to Each and every organ, nerve and part of our body that that nerve controls. So, put the bone back into place, the nerve can work freely again (kind of like a hose with water that you are stepping on… if you don’t take your foot off, the garden won’t get enough water and will eventually die…JUST LIKE YOUR NERVES). My suggestion: Find a Acupuncturist who was TRAINED in China and has at least 10 years of practice. Then find a Chiropractor who specializes in GONSTEAD. They need about 10 years practicing this as their primary technique. Go to both people for 3 times a week until you feel better… it took me weeks but you need to stick with it long after that. Only 10% of your nerves send messages of pain, which means if there is pressure on the other 90% of the nerve you may feel fine but the problem may still be there. To this day, I still get chiropractic treatments monthly. BUT I AM PAIN FREE and not a walking zombie on drugs or risking terrible surgeries, which may or may not work. Try it. It will not hurt you. It can only help. I am telling you that my pain was as real and terrible as yours. This was my story posted in 2000.. *************************************************************** Date: 12/30/00 My Story, MY CURE On August 7, 2000, I went to get a dental check up because I was having tooth pain. After aggressive probing, no problems were found. The next night I was in the car with my husband when I was stuck with a lighting pain in may face that sent me spinning. I thought I had just been electrocuted. The pain went from my temple to over my eye and on my cheek. I could not hold back the tears. We immediately went home. I took some painkillers and tried to sleep. The next morning the pain increased. My face felt like lava steams were pouring from my temple. Suddenly the same side of my face turned bright red and swelled like I was having an allergic reaction. It was as though someone had drawn a line down my face and painted the right half red. My husband and I thought I was having a stroke. Thankfully the redness soon went away. We called a family friend who was a Chiropractic Neurologist. Based on the symptoms we were able to rule out a stroke, but he had me immediately see my general doctor in the morning. He suspected something called Trigeminal Neuralgia. Upon going to the Doctor, I was given VERY high doses of steroids and told to give it time. They suspected the dentist damaged my Trigeminal Nerve and confirmed what the Chiropractor suggested. (The steroids did nothing but make more give me what was called steroid rage and aggressive weight gain.) That day I was struck with even more severe pain. I thought I was going to die. I truly thought I was having an aneurysm or had a brain tumor. My head felt like an explosion had just happened. I spent hours in the dark with ice on my face, had taken painkillers and still nothing helped. When I told an MD how I felt, his response was, “ Oh come on, you are exaggerating.” This was the kind of blind ignorance I was running into at every turn. My husband was beside himself, he was helpless and this was devastating. He was gently touching my face as if to heal it, but nothing worked. Days went by, then weeks, more steroids, painkillers and doctors. I missed days and days of work and when I actually showed up I looked like a Mac truck had hit me. Then my Chiropractor sent me to see a Neurologist MD and he sent me in for an MRI with contrast and a lot of blood work. This was to rule out MS, Lupus, Brain Tumor and many other dreaded diseases. After the results came back the ruled out all of the above and ruled in Trigeminal Neuralgia as a definite diagnosis. He wanted to treat it with anti seizure drugs that are usually used for Epilepsy. This would be taken for life. The medicine would make me tiered, not able to work as I currently had and basically strip my life even as the TN had. At the age of 31 I was not ready to give in to this as a life disease. Prior to this, my husband and I were planning to move to Peru and all plans were on hold until we knew my future. My Neurologist told us that people commit suicide over this. The pain is simply intolerable. We had to find an answer. My husband found one. He read on the Internet in a little article that said that acupuncture and chiropractic combined has seen wonderful results. SO we went to a friend of my husbands who had practiced acupuncture for 20 years in China and recently moved to the states to become a Chiropractor. He wanted to see me immediately 3 times a week. He adjusted my first cervical vertebra to stimulate brain and nerve function, and acupuncture was to help work together with the specific chiropractic adjustments. Don't worry. If you can handle TN you can handle a few needles and an adjustment. No Problem! It had been 2 months of pure pain. We had two weeks of sessions and I did not feel much improvement, but I was not giving up on it. Then suddenly, I left a session, and I noticed some of the tingling felt different. I didn’t say much that night because I didn’t want to jinx it. Then the next morning, I woke up without the painful headache and brushing my teeth no longer hurt. I had tears in my eyes. I ran and told my husband. The episodes went from over 20 a day to under 6 and I was headache free for 4 days in a row. (That was a first). It just got better…. Just after 5 weeks of treatment, I am 95% symptom free. I am better than before, because I no longer take feeling good for granted. Each day I feel good I feel blessed and I must tell everyone about his. I cannot let people think they must take those drugs for life or have horrifying brain surgery. THERE IS AN ANSWER. FIND SOMEONE WHO CAN HELP YOU. DON’T GIVE IN. We are now living our dreams and moving to Lima, Peru to celebrate life. It was almost taken from us. Now we are going to give back all we can. If you need to reach me or want to learn more PLEASE find me. Our current email address is: MyersinPeru@hotmail.com Please don’t give up. Love, Laura M. Name: KATHY I HAD A BASIL CELL CARCINOMA (SKIN CANCER) THAT GREW INWARD ON MY FACE FOR YEARS THAT EVERYONE THOUGHT WAS A HARMLESS MOLE. IN MARCH OF 2002 I WAS TOLD TO HAVE IT REMOVED BECAUSE IT WAS BEGINNING TO LOOK DIFFERENT. IT WAS CANCEROUS. IT TOOK THEM THREE ATTEMPTS TO REMOVE ALL OF IT, IT WAS DEEP. AFTER THE SURGERY, I WENT FOR THE FOLLOWUP AND EXPLAIN THAT I WAS STILL IN GREAT PAIN. IT WAS SHORTLY THERE AFTER THAT IT WAS DETERMINED THAT I HAD DAMAGE TO THE TRIGEMINAL NERVE. THIS WAS EITHER CAUSED BY THE TUMOR OR THE SURGERY ITSELF. I HAVE HAD THIS PAIN FOR TWO AND A HALF YEARS NOW. I HAVE TRIED MANY ANTICONVULSIVE AND PAIN KILLERS. I HAVE SEEN A COUNSELOR FOR THE "DEPRESSION" I FEEL, BECAUSE OF WHO I AM, AND WHAT I WAS ABLE TO DO BEFORE THIS HAPPENED. I HAVE NOT WORKED SINCE THIS HAPPEN. BETWEEN THE SIDE AFFECTS OF THE MEDICATION AND THE PAIN, I AM HAVING A HARD TIME WITH THE LITTLEST OF THINGS, NEVERTHELESS A FULL TIME JOB, WHICH BY THE WAY I HAD A WONDERFUL CAREER BEFORE THIS. MY MARRIAGE SUFFERED AND SO DID MY CHILDREN. I HAVE THINGS MORE UNDER CONTROL, OR AS CONTROLLED AS ANYONE COULD WITH THIS. THE COUNSELING HELPED ME TO FOCUS ON THE POSITIVE THINGS IN MY LIFE AND NOT TO DWELL ON THE THINGS I CAN NO LONGER DO. I HAVE STARTED EXERCISING WITH MY HUSBAND WHICH HE LOVES, ALSO WALKING, SWIMMING OR FLOATING TO RELAX THE NERVES. I GO TO PHYSICAL THERAPY THREE TIME A WEEK AND I PACE MYSELF WITH THE OTHER NECESSARY THINGS I MUST DO. I DO NOT GO FAR FROM HOME ON MY OWN AND ALWAYS WITH MY CELL PHONE. I GET MORE SUPPORT FROM EVERYONE NOW BECAUSE THEY ARE NOT AFRAID TO BE AROUND ME. THEY UNDERSTAND MORE AND KNOW I NEED THEM. MY CHILDREN ARE GROWN SO THAT HELPS, 23,21,15. I AM ABOUT TO GO TO COURT FOR SOCIAL SECURITY BECAUSE I WAS DENIED, ALTHOUGH I HAVE A PRIVATE DISABLITY COMPANY THRU MY PREVIOUS EMPLOYER THAT APPROVED THE DISABILITY. THE DENIAL EXPLAIN THAT THEY COULD NOT FIND A CATAGORY FOR THIS CONDITION SO I HAD TO GET AN ATTORNEY AND FIGHT IT. HAS ANYONE OUT THERE ON SS DISABILITY. AND IF SO HOW DID YOU. I AM SO GLAD I FOUND THIS PAGE AND ANYONE WHO WOULD LIKE TO CORRESPOND PLEASE FEEL FREE. IT WOULD BE NICE TO TALK WITH SOMEONE WHO UNDERSTANDS YOU. Name: Joanne W. I was diagnosed with Trigeminal Neuralgia in 2000, after almost crashing my car, from having a sudden burst of excruciating pain in my head. It lasted a few seconds. Then a dull headache followed for a few days. A few weeks later it happened again. I was so frightened I went to my doctor. He diagnosed the disorder, suggested medication as an operation was 'risky'. I have been on medication since, but recently weaned myself off, what a mistake as it has come back with a vengeance. I feel such horrible pain, and a constant headache, and feel almost numb in my face,as though it has dropped (but it hasn't) I get a dull pain down my arm and in my shoulder and neck, it almost feels like you are having a stroke, -I would imagine. Does any one else feel these symptoms? I am now back on my medication, but was told previously that prolonged use can cause liver complications. Is this true. Name: Donnie T I feel a little melodramatic as the condition I suffer from appears to be milder than your other readers. I seem to get the condition almost annually for anything between 3 days to 3 weeks, although the last 2 episodes have been the latter.The symptoms I suffer from is a feeling that my nerve endings are right under my skin .The sensation normally eminates from the right/rear of the crown of my skull, down the right side of my head on down my right cheek. It seems to stay there for 2 or 3 days and seems to retreat back up the way before it remains where it started on the right/rear of the crown of my skull. Putting a brush through my hair is not comfortable and although I would not describe it as agony it is certainly painful enough to get my attention. Do I have Neuralgia? If so, what type do I have? Why do I seem to get it almost annually? Is it like some people who get cold sores every year, is it in my genes? I take Ibuprofen which seems to take the edge off it but it returns when the drug wears off. It seems to be that it's a waiting game for it to finally subside, which it does. My fear, however, is that it appears to be staying for longer each time. Can someone clarify the above queries and possibly offer advice on the treatment yours Donnie Name: Dean P. Dear Sirs, Several years ago I suffered an attack of what I now know as facial neuralgia( I do not know what kind). I went for an mri and the doctor cleared me of any brain abnormality. The pain was severe and lasted several days then dissipated over the following weeks. Since then until last Thursday I was pain and symptom free. Since Thursday the same symptoms as before in my temple and around my eye have come back. I do not have an explanation why this has happened. I have never been in an accident and the mri cleared me of any tumor. Will this go away, like it did before? Thank you. Dean Name: Amy I am writing this today, though I have been to this web site many times since my diagnosis, because I cannot function. I am having terrible pain on the right side of my face. I don't want to breathe. Breathing makes the air hit my teeth and that causes shooting pain that lasts for awhile. So I breathe through my nose and this hurts my sinus cavity, a dull,nagging ache. I cannot decide which is the best way to breathe and which pain is less excrutiating. So, I feel out of control with my life. My face is puffy from the meds I guess, and it doesn't go away. I hold in water and nothing fits me right. The cheekbones that used to be so pretty are gone. My face is the same to others, they see a slight swelling, but I see something that I cannot control. So I try to move more. The pain and the meds make me sedentary and so I think that I should walk. But when I walk the air hits my teeth, these two teeth that the TN loves to devour, and I can't walk. Besides, breathing that air is frustrating. I am in school. I have missed so many classes. My life is out of control. I can't, feel like I am falling apart, not myself, the meds, the pain and I am horribly depressed. Well,hope no one reads this particular entry for inspiration. I feel that I do not want to go on anymore. My children make me sad. They need me so much. Thank God for these beautiful kids. ALright then. Sorry for the poorly constructed pep talk. Name: geraldine I have just been diagnosed with TN and came here to find out more about it and what I am up against. I started with a numbness in my face and then I had an earache that lasted for 6 days. I get sharp pain in the temple area that lasts only seconds and the same from my mouth to my ear. The numbness is constant. My ear feels full all the time and I sometimes get a watery squishy sound in it mostly when I try to sleep. I have trouble sleeping and I wake up every 3-4 hours for no reason. The corner of my eye feels like it is being pulled to the left. The left side of my mouth feels drooped and sometimes it is noticable. My left arm feels numb and my hand is sometime stiff and cletched when I wake up. I've had a CT, stress test, and doppler. My caroid artery is enlarged on the left side and the doppler showed an unusual pattern in the vein positon, whatever that means. I've had alot of stress in my life, I have been on anti-depressants for a period of years. I am 51 and having hormonal changes.I've had breast cancer and treated with a mastectomy, no radiation or chemo. I haven't started the medication. I see the dr. in 3 months. What I've read on this site scares me. Is this going to get worse? Can this go away?? I have had alot of dental work, and recently had a bridge put in on the upper left side. Is that what caused this?? Is stress a factor?? the Dr. increased my antidepressant medication when he added the neurontin. I have alot of questions please e-mail me and put tn in the subject space. gerri Name: DON I am 46 years old and in October/1998 I was sent by my dentist to an Endodontist for a root canal once he saw I was sensitive to temperature on my lower left molar (second from the back). The root canal was done that same day and the discomfort which was mild following the root canal became excruciating over the next couple of weeks and to this date has never changed. The Endodontist even did the root canal a second time about 6 months later but there was no change. I have seen a number of specialists for additional opinions such as Periodontists, one an expert in facial pain and Endodontists but all any would say following an exam and an x-ray was the root canal was good work and to never pull the tooth. In addition I have had a bone scan as well as an MRI without any results. About 3 years ago I became a patient of a Pain Management Centre at a major hospital and after numerous exams and consultations it was concluded I had Atypical Facial Pain (facial-neuralgia) which was also described as a neuropathic problem. I have described the pain as more of a cutting pain. It took more than a year to find a medication that would work reasonably well without significant side effects. That medication is Buprenorphine, which I have been taking for almost 2 years. As well about a year ago the Director of the clinic who is a Neurologist told me all the clinic could do is control the pain as best they could through the use of medication but would be unable to find a resolution. Despite the opinions of all specialists I believe my only option at this point is to extract the tooth and hope everyone has been wrong. Although the Buprenorphine is the best combination of pain control with minimal side effects of all the medications I have tried, it still does not allow me to function properly. I am still lacking in the necessary stamina to function on a day to day basis. There are also many days where the medication is not totally effective. I am basically lethargic and more tired on a regular basis than I ever was prior to the root canal and the medications I have had to take. Name: anonymous I'd like to know the difference between "cluster headaches" & TN? I've been diagnosed with both! Please help me wade thru all this as my husband & I are becoming overwhelmed! Thank You, Name: "Pokey" I am not sure why the pain started, but right before it started, I had an anxiety attack--the first one in my entire life. That whole experience was bad enough, and it took me a long time to work through why it happened, but to make it worse, I started experiencing severe pain in the left side of my face, neck a few weeks after the anxiety attack. It took over 5 months and visits to dentists, about 5 doctors, mri's, and a cat scan, before I received any help at all. I started with the dentist, because it began with pain in my teeth/mouth, although I couldn't really pinpoint which tooth it was,as it was also in my gums and cheeks. All of my xrays came back normal--no tooth issues, so they told me to see an Ear/Nose/Throat specialist, because they thought it was sinus related pain. Saw the first one, who recommended surgery for "chronic sinusitis". I went for a 2nd opinion and the Dr. told me that my problem was not sinus related, I should not have sinus surgery and recommended I see a neurologist. That really scared me, because I started to think that I could have a brain tumor that was causing it. Anyway, I saw the first neurologist and she diagnosed me with Trigeminal neuralgia and put me on Tegretol. That medication was worthless for the pain and made me feel so "out of it" and tired that I could barely think and function. I never stopped working throughout this whole time, and that was really hard, because no one can tell you're in excruciating pain, because it's invisible to others and no outward physical symptoms exist. I didn't really tell anyone at work about it, as I knew that they wouldn't understand anyway, and they probably don't care anyway. I saw two more neurologists and the 3rd one was finally the one that came up with the diagnosis of "Atypical facial pain". I had never heard of it before, so I started reading about it on different websites. Based on other people's discriptions of their pain and descriptions of the symptoms of atypical facial pain, I knew that the diagnosis was the correct one. I took Elavil (can't remember the dosage though) for about 2 years and it really helped, although it made me gain 30 lbs., which I really didn't like at all. But, it helped the pain. After about 2 years of being on the meds, I actually forgot to take my medications when my husband went on a business trip and noticed that I felt ok not taking them. I actually went "cold turkey" and have been off of the meds for almost 5 years now, much to my happiness and relief, as the doctors all said that I might have it for the rest of my life. That's not a good thing, when you face a possibility of living in pain for 50-60 more years, if I live to be pretty old. Unfortunately, my pain has returned as of the beginning of this week and I'm back to being scared. I am under a lot of stress, especially at work and I tend to worry a lot--alot of it is unconcious worrying, I believe and it's like I can't help myself. I wonder if that is what brings this disease on for me, since my first "attack" began after having that anxiety attack. Anyway, I'm scared and I'm really upset now. I was sooooo happy to be free of pain! My life was normal again and now I'm really afraid of this pain and my future. I get really mad, sad, and depressed about it and feel sorry for myself and all of that. I'm sure that others that suffer this type of pain can relate. You wonder "why me?" and "what did I do to deserve this?". I don't want to go back to living with constant pain and/or being on antidepressants...I'm really scared. Hopefully, it will just go away again. I'm going to try to work on "destressing" myself. If that doesn't work, I guess I'll go back to the doctor. Thanks for reading my story. Name: "Rusty" I have had TN for over 19 years. Acupunture helped. Botox helped. Meds helped. But I finally went to Pittsburgh and had Drs Jannetta and Casey perform surgery on me. This was 15 months ago. It has been a blessing. I am very grateful for all who helped me. My only suggestion is that you try everything you can including yoga,acupunture,botox. I have not heard good results from gamma knife so I went with the surgery after being so tired of all the meds. I feel 20 years younger being off meds and have renewed energy. I simply pray that it lasts. Every once in a while I get a "sensation" but not even close to what was when the pain was truly unbearable. I send my prayers to all of you and wish you strength,healing, and blessings. Name: Jan Here is my story. 3 years ago I had pain in my upper front tooth. The tooth had been crowned several years ago because it was chipped when I was a child. I was referred to an endodontist because my general dentist could not see anything wrong on the x-ray. The endodontist did not see anything on the x-ray either, but I had complained about pain before, so she went ahead and did a root canal. The pain went away for 2 weeks, so my general dentist placed a post and core in the crown and filled it. 2 weeks later it began to hurt again. I went back to the endodontist who put me on rounds of steroids and antibiotics for several weeks, to no avail. She couldn't do a retreat because of the post and core, so she did an apicoectomy (surgical root canal). She said she did not notice any problem with the root, but filled the end and sewed my gum up. It healed nicely, but the pain returned a couple of weeks later. I went to another endodontist for a second opinion. He felt the root canal looked fine and the bone was growing back and told me to wait for it to heal. Since it was my front tooth, I did not want to pull it if I didn't have to. The pain continued and the endodontist thought perhaps I was clenching and grinding, so my general dentist made a bite splint, which did not help at all. (He saw no evidence of bruxism and I did not have headaches or some of the other symptoms.) Then I began having pain in my lower front the tooth directly below my upper front tooth. It hurt to touch and the pain was unbearable, so back to the endodontist for another root canal. The root canal did not help, so I had another apicoectomy on my bottom front tooth. It did not help. Now the whole side of my left face hurt. Sometimes I couldn't tell if it was the top or bottom that hurt (probably referred pain). The endodontist referred me to a facial pain specialist who thought I had TMJ. I spent over $1,000, to no avail. I then went to an oral surgeon who looked at my panoramic x-ray and said I did not have TMJ. He did another apicoectomy on the lower front tooth and the root cracked and I had to have it pulled. I was devastated. I paid over $3,000 for an implant, which looks great, but the pain remained on both my upper and lower gums on the left side and has continued ever since. I lost a perfectly good tooth. Sometimes its excruciating burning pain and sometimes it is just a dull ache. There have been times that it almost goes away, but my hopes are diminished when it comes back. It just involves the left side of my face. None of the dentists or doctors have a clue. My guess is the first endodontist hit a nerve either by the root canal or the injection of novacaine. I finally went to a neurologist who put me on Neurontin. Then I had to start taking Wellbutrin for depression. I tried Elavil which is supposed to help and did somewhat, but the side effects were intolerable and I stopped taking it. As I am sure you all know, chronic pain can really be depressing. First I prayed for a cure, then that I'd find a medicine that worked, and now I'm just praying to learn to live with this the rest of my life. I read posts on this site and the oral nerve injury site almost daily, as it comforts me to know I'm not alone. I am 53, happily married, work full time, have three children (teens), so my busy life must go on. I try not to let it interfere, but sometimes the pain is so bad I have to increase my meds and I feel like a zombie. The neurontin has definitely affected my short-term memory. I don't like to take meds, but they do take the edge off some. I also ordered some Capsacin candies which really help. I highly recommend it. If you research the benefits of Capsacin you will read about it depeleting Substance P, a pain neurotransmitter. After sucking on one (which is sugarfree by the way), the pain dissipates for awhile. E-mail me if you need more info. So, sorry for such a long story. If anyone has a similar story or has had success with any treatment or medications, I'd appreciate hearing from you. I am in good health, eat healthy and work out. If it weren't for this affiction, I'd feel terrific. Maybe someday there will be a cure or a new medication that works. Thanks for listening. Take care and God bless. Name:
"Dolly" My horrible pain started when I was 35 years old and a couple of weeks pregnant with my second child. It began in my mouth (left lower teeth). I thought it was a dental problem. I went to every kind of dental specialist. There was nothing wrong with my teeth. I was misdiagnosed as a "tooth grinder" and was told to "relax". The pain got incredibly worse to the point where I would cry out in intense pain many times during the day, and in the middle of the night. The pain seemed to be linked to movement of my tongue. Stabbing pain radiated from my tongue directly into my ear. I had never experienced such excruciating pain. I couldn't eat, swallow, or talk due to the pain. I went to lots of doctors and no one seemed to know what was wrong with me. After twenty months of this pain, I finally found a neurologist who said I had an atypical form of TN, and the course of treatment would be Tegretol. Well, the medication helped alleviate the pain (about 70% pain reduction), but did not cure it. Then.... my ENT doctor thought I needed an MRI of my brain and neck. Immediately following the MRI of my brain and neck, I drove home with NO PAIN!!!!! I couldn't believe it! After 22 months of torture, I was cured. I have not had a single bit of pain ever since! My neurologist doesn't believe it was the MRI that cured me, he thinks the Tegretol happened to "kick in" that exact day of my MRI (I had been taking the Tegretol for about 2 and a half months before the MRI, and still had pain going into the MRI procedure). I have spoken to a doctor friend since then, and she believes I had a trigeminal nerve compression, probably brought on by my pregnancy hormones and low blood pressure. She thinks that the MRI definitely was what cured my pain. I don't know if my story will help anybody. If you have symptoms like mine, and have not yet had an MRI of your brain and neck area, please consider it. I hope this helps someone. God bless! Name: Diane Hello again, Just to update anyone thats interested!!! I have now been to the hospital and seen a Professor of Oral surgery who now says that I've to stop the Gabapentin for the atypical facial pain(do I dare??) because I've to see a psychiatrist!!! He also says that my bad attacks are cluster migraine/headaches as my history mirrors these exactly, if he is right I'd like to know why I've been left like this for 21 years. Couldn't take the Indometicetin because they made me feel terrible. Got to go back in November so I'll be back... To put the icing on the cake I had a lovely holiday with my husband to Menorca.....and came back with Pneumonia, HAPPY DAYS!!! KEEP YOUR CHIN UP EVERYONE. BEST WISHES TO YOU ALL. REGARDS Diane. Name: Colleen I'm a 30yr old single mother of two kids, and one Saturday afternoon while shopping I experienced the absolute worst pain I have ever been through (more so then my 10lb son!). There were radiating pains through different teeth and a constant agonizing pain along the left side of my face. I instantly thought it had to be a tooth, so called the dentist. Luckily he was out of town so I went to see my family doctor. They were convinced it wasn't a tooth and set me up for an MRI the following day. Luckily, the MRI was negative and after 4 more days of excruciating pain they diagnosed me with TN. I started the meds and have increased to 200mg 3x a day. It's been 3 weeks and I haven't had much relief, in fact the "episodes" only seem to last longer. I have constant pain on the left side of my face, ear, sinus, eye, gums, jaw... . Last night my neck was hurting and I didn't think much of it. I woke up and went to work as usual, while sitting at my desk my neck began to swell. The doctors ran strep tests and of course everything was negative. So now I'm on prednizone too. I'm obviously new to this situation but would like to know of any similar cases or what can be done for relief. The most difficult thing for me is not only the pain, but knowing my children are faced with watching me go through it, not understanding what is happening. For the first time in my life I feel completely helpless. Thanks for your time.
Name: Kelley I'm 42 years old and I guess the only good news I've had with this 'condition' over the past ten years is that I was correctly diagnosed early on by my family doctor and was immediately sent to a neurologist. I also live in Cincinnati where TN is very well heard of, with treatments readily available (I lived at the Mayfield Clinic for a time - now I go to a pain management doctor who keeps me as well medicated as he can). Unfortunately, the bad (bad isn't even close to what goes on in my life, as many of you know), news is that every surgery I've had, including two MVD's, Glycerol injection, some kind of nerve sectioning, and most recently implanted Motor Cortex Stimulator; everything - even meds, nerve blocks, and any holistic treatment available - only work, if at all, for short periods of time. The second MVD was a disaster and caused the Anesthesia Dolorosa, which basically ruined my life, as there is so little known about it and hardly any treatments. I would highly recommend serious thought and research before anyone has a second MVD (the scar tissue from the first caused a lot of problems, including the use of my right eye, which was sewn closed). Recently though, I was EXTREMELY lucky to have my insurance approve the stimulator, (to those trying to get things approved by insurance, you have to keep in constant contact with them and provide all information and records, and have your doctor involved as well), and was thrilled the first three months it worked. Then slowly but surely the pain came back as it always does. I've been on disability since 1999, and I have 5 children and a husband who make it possible for me to get through each day. If it weren't for them, I don't know that I'd even be here to write this. I'm getting extremely exhausted fighting such debilitating pain constantly. I spend my days and nights inside my house, usually in bed just staying in a dark quiet room, or on the couch watching tv and spending time with my family until I can't take the noise anymore. My favorite hobby of reading is almost impossible because it hurts my head so badly, so I do very little of it anymore. Everything I do only increases the pain. I am very lucky to be surrounded by a family who loves me and tries everything to help take care of the things most other mothers can do, AND me; yet I'm so alone with my pain that I feel completely separated from them. I watch as others do just daily things and sometimes the rage about myself almost smothers me. Anyway that's my story. I'm just a sad lonely person with a sad lonely disease (I don't even know if you can call it a disease or just a 'condition'???), that fills me with hate, who feels great sympathy (and some kind of 'kinship', if that makes any sense) for every single person I read about with any of these diseases(??) conditions(??). You are all in my thoughts and prayers. Thank you for listening (reading) my story. Name: abbie I've posted two stories about my facial pain last year. I'm back to give you an update. As of today, I've been relatively pain free except for minor break through pain that comes and goes. I've been seeing a neurologist by the name of Dr. Maritn Lesser. He listens to me and has been a great help and I must say that he has given me my life back. My last doctor visit was with Dr. Friedman from the Shands of Gainesville whom said that I was inoperable so he referred me to pain management. My neurologist prefers to treat me himself. Today I'm on 2,400 mgs of neurontin, 75mgs of pamelor and 20 mgs of oxycontin two times aday. Without the pain medication, my break through pain was unliveable. I know that the majority of doctors don't like to write out pain medication, but sometimes, like we, it is so much needed. I solely believe that the oxycontin has made me able to function again. I'm tired of hearing all of these negative stories inregard to that medicine. If this med is taken as prescribed there's is no need to fear it or condem it. I'll probably need it for the rest of my life because this facial pain isn't going anywhere, it's just being handled so I can get up in the mornings and make up myself and clean my house and now I'm going to work for the Fl turnpike. I pray everyday to God that this monster will stay asleep in my face. It will be two years this Jan when he first knocked at my door. How depressed I was and so scared. I'll be 52 this Jan. I even was considering ways to take my life because I didn't want to live. I thank God everyday that I'm still above ground. I know that alot of you men and women have felt the same as me. Why, how come and when will it go away. AFP is very hard to treat as to TN which there's surgery for those whom might want to go that way. Nothing else has surfaced to explain this fp. I look very normal and people just can't understand when you tell them about it and there's nothing wrong with your face. It took me over a year and half before a doctor actually listen to me and believed my tears. I was put down by one neurologist and several of them just didn't seem to want to treat me. Well, that part is behind me. I smile again and I must say I forgot what a pretty smile I have. You must keep on fighting until one of them listens to you. Don't be afraid to take your pain medicine if it's prescribed to you. Life is to short to begin with and to live each day almost pain free is something I'll never take for granted again. God bless and good luck to each of you whom might be walking down that same road as I did. Abbie Name: Charles I would like to know if anyone has pain/numbness on both sides of face. Mine began last July, '03 on right side of face and today the pain/numbness have spread all over face and inside mouth. I have had evey tests & been to many doctors. Just completed a 2nd botox treatment but no relief is in sight. I have read that only 2% of those with TN have it on both sides. I can only eat soft foods because with a numb mouth & tongue, it is impossible to chew just about anything--biting one's tongue is not pleasant!! My diagnosis is Trigeminal Sensory Neuropathy. Got the same diagnosis at Mayo Clinic/Rochester. The pain/numbness is 24/7. Any suggestions? Thanks. Name: "smq1404" I was diagnosed with lymphoma in 1990. The tumor was about the size of a golf ball and located in the soft tissue under my left eye. The surgery to remove the tumor damaged nerves in my face and it felt like the pain you get after you hit your funny bone - not the initial sting, but the buzzing, tingly feeling. It started to become more painful and the surgeon went back in and clipped some nerves to relieve me of the pain. It worked for awhile. We tried it again and again, it worked for awhile. I have given up completely on surgery. I take tegretol and I have learned to live with this odd combination of no sensation in a quarter of my face except for pain. The tegretol works well enough, but when things flare up, like now, it can take days for the increase in medication to take effect. Right now, I have a terrible cold and the pressure of my sinus congestion is making me miserable. I try Vicodin and nothing helps. So, I'll wait a few days for the tegretol to work better and for this cold to disappear. For me, it's the whimsical nature of the pain that is discouraging. I don't know when it will stab at me or if I can get away with weaning myself back to lower dosages of tegretol. Tegretol is a relatively easy medication for me to take. I don't have reactions to it and I am pretty savvy in understanding how much to increase and how slow to start decreasing. I don't ever want to do surgery again. I have had grown men's hands inside my face five times and now the ENT wonders why I have a deviated septum. So, that is my story. I don't know if it makes any sense. I'm not even sure why I'm posting it. I don't want to feel alone and to tell the truth, I really feel alone. My face isn't distorted. You can barely see the scar. The nerves that control movement are fine. It's only pain nerves that are damaged. How do you explain the extreme discomfort when you look fine?
Name: "Country Girl" Last October I went to the doctor with what I thought was a sinus infection. After being diagnosed with sinus infection, TMJ and infection of the salivary gland and also having a root canal I was finally diagnosed with “atypical facial pain”. From October till early January I was in severe pain. In early January I finally got in to me a neurologist. She started me on Amitriptyline. This has helped a lot. This medicine makes me fine like I am not all there a lot of the time but it has helped the pain. I am still hoping for another source of treatment. I also in the past few months had nerve blocks at the pain clinic. They did one in front of my ear and 2 in my neck. None of these helped. The pain clinic also put me on Gabitrel to help with the burning. The pain and burning is never the same from one day to the next. When it first started I had dull (extreme pain) in the left side of my face. I also felt like the glands in the left side of my neck where swollen. It also felt like the left side of my tongue was swollen, then this turned in to a burning sensation. I also have the burning in the roof of my mouth like an ice cream burn. Sometimes my teeth and ear hurt so bad I can hardly stand it. I have a lot of numbness in my face and forehead. I went to the neurosurgeon last week and he told me that there were 2 treatments for this, one was the surgical procedure which normally have an 80% success rate and then there is the gamma knife procedure. He said that with the surgical treatment he felt that my success rate would be probably around 60 to 70 percent and about a 70% with the gamma knife. I went a head and scheduled an appointment to see a doctor about the gamma knife, but my hair dresser told me that she sister in law has a problem something like mine. He put me in touch with her last Friday and she told me that she would not recommend the gamma knife at all. She said that she was pain free for about 6 months but after that time the pain was much worse. She has been actually diagnosed with Trigeminal Neuralgia. I have since cancelled my appointment for the gamma knife. Everything that I have read says that there are no treatments (good ones) for the atypical facial pain, which is very discouraging. She has also had 2 of the decompression surgeries done and did receive some relieve with those but she is still in pain. God bless all of you who suffer with this awful pain. I feel your pain (literally).
Name: Denise I have been recently diagnosed with trigeminal neuralgia. At first I got sharp pains in the left side of my face- my head, around my eye, my cheek, jaw, and horrible pains in my tounge. The medication has helped mostly with the pain. I am a pastry chef and I am going crazy because I lost my sense of taste for anything sweet, anything at all with sugar, flour, and basicly most starches. The only thing I taste is meat, salt, and pretty much anything sour like lemon and vinegar. I've been eating salads non-stop which is making me sick to my stomach. I am not as valuable in my profession without a taste for sweets. I really wish that if anyone knows if this is going to go away to please let me know. Thanks. Name: Chuck I had shingles in 7/00 that lasted a good 6 months on the right side of my face from rt. eye to rt. forehead. After signs of shingles were gone the symptoms were not. The severe pain and the...not being able to stand any kind of sensation on that side of my face. Not heat/cold,wind,touch. It would send shock waves of pain. The Docs thought I was crazy, but after I totally destroyed my forehead from constantly rubbing it from the pain, they finally believed me. Needless to say, I had to have a total scalp rotation and skull debridement and lost my right eye. It was pure torture but I survived. I,ve since then had nerve blocks that only lasted a day. Cryo.,where they freeze the nerves. It did not work. They even did a procedure where they go in and use ethol alcohol to kill parts of the nerves. Don,t want to try that again. The only thing I have found thusfar is medication to keep it under control. They are non-addictive meds that I use with a TENS Unit,a battery operated, hand held nerve stimulator. I use the unit at various pulses and strengths to confuse my brain about my pain, and believe me or not, it really does help. You send new info. to the brain and the sensations and pain your brain interprets is actually tricking your own head. You stop, or at least in my case, having pain for a few hours a day while you use it. So, with my meds and my unit, my life has alittle more meaning to it. I forgot to mention that all this started when I was only 34 years old. So it can happen at any age. Name: Brenda I have had facial paralysis, Bell's Palsy, since I was 17 years old. See my story at www.2ssolutions.com/brendaCMT. I found craniosacral therapy in the mid 90's and quit my job to train in it. I am not only a patient who has found craniosacral to work for me, but I am now using it to help others to find relieve from facial and cranial nerve pain associated with neuralgias and paralysis. Name: Patricia I will relate my entire story here. I cannot keep my glasses on my face for too long, the pain being irritated by the touch of the glasses. My TN turned out to me a symptom of a menenioma, a brain tumor which was near the trigeminal nerve. I went to a top surgeon in NYC where I live, at Mt. Sinai Hospital. His name is Kalmon Post, and he was, and probably still is the head of the neurosurgery Department at Sinai. The diagnosis of brain tumor shocked me. I was terrified. But the prospect of never feeling TN pain, along my faith this great doctor gave me strength. I aimed my hopes at Mt. Sinai. I met with Post. He was a likeable guy, and certainly knew what he was talking about. I was in good hands. God had a plan. Post surgery. It takes some time for it to sink in that your surgeon stops liking you the moment he hears (from you) something he doesn't want to hear, like "why does my face hurt now, ALL the time?" I followed up with him for a year. Since he minimized the importance of the excruciating, constant pain I lived with, I was confident that it would go away. At one point he even told me to stop taking drugs and use only ice packs. He never suggested pain management. I never knew such a thing existed. I had never been ill before, and didn't know my way around, didn't know the ropes. I still thought all doctors cared about all patients . After enough time passed, I came to know that I would have to take responsibility for my care, that the surgeon would be of no further help. I was not aware that if the surgeon admitted that my pain was real, well then his stats would go down. So much for that. With help and research, I found a good team at Beth Israel Hospital. Although my doctors there haven't "cured" my chronic facial pain, it's clear that they are doing what they do because they care. As we know, most everyone who ends up in a pain management facility is there because they have tried everything else, and are at the end of the proverbial rope. Today, I take large doses of opiate medication, anti-depressants, neurontin, and of course, oceans of laxatives. Does this make the hurt go away? Nope. But sometimes the pain is 'managed'. My life ears no resemblance to my former life, and I don't really know what my next step will be. As I read these stories, I am moved by the suffering here. I do have something to add, and I hope it helps. If you have any money left (I have been wiped out, as you might guess), care for yourself as much and as often as you can. Receive massage as often as possible. Water is an important treatment-take baths, (not too hot) immerse your body in water, the ocean, a pool, the bathtub. Some one here accused an acupuncturist of sticking a needle through her cheek until it went into her gum. That's impossible, that has nothing to do with acupuncture. Acupuncture needles are only used very superficially, and the needles are as thin as hairs. Yes, the treatment can cause momentary pain, especially to those of us who suffer chronic pain, but a certified, gifted acupuncturist can be a huge help in the long run. Perhaps not directly, but this treatment is very valuable in relieving the tension and spasm caused by chronic pain. Also, time in a quiet place, such as a spa, being in nature, breathing clean air, these things are valuable to a chronic pain survivor. If I could afford these things now, I would go for it 100%. It is very tough to avoid drowning in self pity when this happens to us, but at all costs, we must try to keep our dignity. I wish you all well. Name: nicole Storyi have been to every doctor it is to go to and everyone tells me the samething that they dont know and give me pills and send me home i still dont know whats wrong with me Name: Marlene ABOUT SEVEN WEEKS AGO I STARTED HAVING SEVERE PAIN IN THE RIGHT SIDE OF MY FACE, EAR, NECK AND HEAD.I'VE BEEN TO SEVERAL DOCTORS ABOUT THIS PAIN.ONE DOCTOR TOLD ME THAT I HAD A EAR INFECTION AND HE PUT ME ON ANTIBIOTICS & PAIN MEDICATION. THIS DIDN'T HELP MY PAIN. I THEN WENT TO ANOTHER DOCTOR THAT STATED RHAT I HAD ALL THE SYMPTOMS OF TN. HE REFERRED ME TO A ENT, WHO SAID I HAD TMJ. I THEN WENT TO A DENIST & HE TOLD ME THAT I DIDN'T HAVE TMJ. I DON'T KNOW WHAT KIND OF DOCTOR I NEED TO SEE TO GET A CORRECT DIAGNOSIS. PLEASE HELP. I'M IN CONSTANT & SEVERE PAIN. AND CAN'T FUNCTION WITH THIS KIND OF PAIN. MARLENE Name: Evelyn Dear Dr.'s, I am a 54 female. What a story I do want to tell. I will not be able to give all the correct dates, as I have gone through extended treatments in the past six years. I have had severe headaches since I was a small child. Never went to Dr.'s for this problem for we were very strapped for funds as I was growing up. I have been told by many physicians that my pain started when I was nine yrs. of age. I had jumped into a pool and hit the top of my cousin's head, which knocked me out for several minutes. I will now try to bring to you as many treatments as I can remember: It all started after visiting an Oral Surgeon here in my hometown. After a M.R.I. it was positively shown that I had a very bad case of tmd. The oral surgeon sent me to Wisconsin in 1999. It was determined that I should have an arthrosopic surgery. No Help! I then returned to Wisconsin in 2000 and another surgery was done. This time I had a Cartillege implant. These both were performed by a Dr. Ryan. The pain still there and chronic. I went to Pain Management Dr.'s. Five in all. After living in agony I then was referred to another Oral Surgeon in Indianoplis. This Dr. did still yet another surgery. I do not know the medical term-- He broke the bone in the lower jaw, pulled the joint down a quarter inch, and wired my mouth shut for 8wks. The pain persisted even with the wires. With wires still in tact, I then was put under a General and two teeth extracted. Again still living with severe pain. (I might add that all this pain was only on left side of face, eye, ear, neck, side of nose, and shoulder also, left side of tongue stays coated and at times seems swollen.) Since 2000, I have gone to many Neurologists, Chiropractors, Ear, nose, throat Dr.'s. Also went to Mayo's in Jacksonville, Fl. I was all set to have a stinulator implanted by a Dr. in Cincinnati but insurance denied the procedure. I went to another Neurosurgeon the 5th of this month and his diagnosis is that I have a pain pump implanted at the base of my brain. This surgery is sceduled for the 30th of this month. As of this date the surgery is still in reveiw with the insurance co. I've been told by this Dr. in Inianapolis and Mayo's that this is my last and only choice. After six yrs. of literally spending my life alone and down with an ice bag. (which I have to freeze my face until I have to absolutely to peel it away) I am so very, very upset and depressed. I don't know how I can go on if this is not approved. After over $55,000. and six yrs later I just cannot go on if the pain pump surgery is not done. ---our insurance would not pay because they say it is to do with dental----- PLEASE! If there are suggestions or comments from any Dr.'s out there, I am BEGGING for HELP! This message is just a tip of the iceberg of what I've gone through. Please, won't someone help me????? Sincerely. Evelyn Grimes
After calling today and
Name: JUDY StoryMEDS LOOSE THEIR EFFECT AFTER SO MANY YEARS,AND WHAT IT DOES TO YOUR BODY IS A DANGEROUS THING. IVE HAD THIS CONDITION FOR FIFTEEN YEARS TOOK ALL THE MEDS WITH LITTLE RELIEF. MY PAIN HAS NOW SPREAD TO ALL BRANCHES OF THE NERVE AND THE HEADACHES ARE MORE FREQUENT. I HAVE TO SAY THAT I HAVE A LOT OF A BURNING FEELING AROUND THE EYE AREA AND MY EARS CONSTANTLY RING. NEURONTIN IS THE DRUG I STAYED ON THE LONGEST BUT IT AFFECTED MY BLOODPRESSURE HIGH AND I GAINED SO MUCH WEIGHT. SO FAR MY PAIN IS CONSTANT BUT MANAGEABLE. NOT TAKING ALL THOSE PILLS IS HARD BUT AT LEAST I HAVE BEEN ABLE TO LOOSE WEIGHT AND MY BLOOD PRESSURE IS NORMAL. I PRAY EVERYDAY FOR NEW RESEARCH THAT WILL LEAD TO CURE OR AT LEAST A PILL THAT HAS VERY LITTLE SIDE EFFECTS. JUDY Name: Randy Hi, My "new headache" as I called it started after I had my first sinus surgery eight years ago. I mentioned my headache to my ENT doctor and he refered me to a neurologist where I did not get much relief. I then had my wisdom teeth extracted and found no relief so I was refered to an orthodontist. He diagnosed me with TMJ and wore the fitted mouthpiece as directed and now every so often when I think that it might help with my facial pain. My headache is a dull aching pain that covers about the entire left side of my face. Most of the time, there is a sharp pain at the occipital region of my head just off center to the leftside which travels towards the front of my head. My headache is usually mild in the morning but as the day goes on it gets worse and by the end of the day it is difficult to fall asleep. Just recently, my neurologist diagnosed me with restless leg syndrome from a sleep study test that I slept through because of muscle tightness and leg cramping. He put me on the new medicine, Requip, which is given to Parkinson's diseased patients. This medicine has helped me not have as much cramping and allowed me to fall asleep easier. Unfortunately, the better nights sleep has not improved my headaches or facial pain. Currently I am on prozac, which is keeping my mood up despite the pain. My viox has been increased to 50mg and takes the partial edge off teh pain. I also get some relief from Fiorinal(Butalbitol Compound) when my body has no tolerance build up of the drug. I find that I feel worse if I take over the counter medications such as Tylenol, ibupfrofen or asprin. My pain is temporary lifted if I am taking Vicodin but I have never been prescribed it for my headaches. My doctors at this point do not want me ,as young as I am, to be addicted to these pain relievers. That's why I am on the non-addicting pain reliever name Viox. Stress is a huge part in the control of my headache and facial pain. Loud noise, too much noise, bright lights, too much going on at once, reading, listening and worrying among others can all affect the intensity of the pain. Lately, I have tried to put BenGay on what might be a trigger point near my ear to see if it helps with the pain but I am inconclusive as to wether it is helping . Tomorrow, I am going to a pain specialist for a non-related injury and will ask him what he thinks about my cause. Thanks for reading and if you want to e-mail me its there.
Name: claudia I had a root canal in my upper molar last year, affter it was done I was in more pain and ended up having it pulled, because of that there were two teeth missing and then I had a bridge made, it immediately when set ached all my upper teeth, 9 months later one of the teeth attached to the bridge started to throb, again they sent me for another root canal, it was a different endo, that also throbbed uncontrollably until two months later had to be pulled and the bridge sawed out, the last tooth on that bridge a week later did the same, so three teeth were pulled, beside having sore aching gums later on I felt fine for two months, this was all on the top left. Now the bottom tooth is having the same pain, no dentist or oral surgeon would touch me, I went to a neurologist and he said he couldn't see any connection to TN, gave me no direction to go in, and I still have pain in this tooth its been three weeks, what could cause this jumping throbbing pain no one seems to know. Nothing helps advil laughs at this, dont know if I should pull this one again in which I will have to seek a new dentist or oral surgeon, they all think its TN except the neurologist. Does anyone have tooth pain like this? Name: "JOSEPH BEJ" My hope is to@‚eet someone with the same condition as mine. For twenty years I have suffered from a burning sensation near to both corners of my mouth. This has been constant and is accompanied by a slight swelling and faint red patch. I chew lots of gum as this provides some relief as does alcohol. I hesitate to take some of the proposed medications like anti depressant because of their side effects - eg impotence. I want my marriage to survive!!! Like many of you, I've have been very frustrated by unsympathetic doctors, rounds of new drugs,, dashed hopes. All of rounds of new drugs, dashed hopes. All of us have had to struggle with the pain and its many emotional and spiritual challenges. My heart goes out to all ‚— there anyone out there who has had a pain similar to mine? I believe there is a solution to my problem, even if it is reducing the burning sensation to something much less. I look forward to hearing from you. Richard ps sorry about the spelling errors - i cant find the spell check Name: Dusty I have written before. What I want to say is that I don't see hardly anyone using Amerge which is naratriptan. It has changed my life of suffering from TN. I went through all the dental procedures, no diagnosis, just constant pain for years. Finally I received the diagnosis of TN about 3 years ago. After trying various anti-seizure meds & Tegretol, all of which I couldn't handle, I accidentally discovered Amerge. It is a migraine med that inhibits activity in the trigeminal nerve. It works, especially in combo with pain meds. It is expensive. But it is worth it. I wish more suffering people would tell their doctor about this med. My prayers are with you all. This is the most disabling & painful health problem -- but for me & maybe you, relief without side effects is in Amerge, 2.5mg tabs. Please believe me, I am not a salesman --but a very sick patient who has found some relief. Name: "jgtk1559"
I am a 44 year-old female. I started with fairly mild, occasional sinusitis about 1995 which gradually got worse over the next 3 years. In 1998 I started a new, more stressful job and over the next 12 months the sinus pain got considerably worse, with terrible pain around and behind the eye. Crying made it much worse, as did tiredness and missing meals. My GP thought there was something causing pressure behind the eye, so I was sent for a brain scan for a suspected tumor. Fortunately, they confirmed I had no tumor, and I was packed off home by the hospital with a very patronizing comment: "you'll probably find the pain disappears now we've ruled out a tumor"! The pain didn't go away and subsequent x-rays showed chronic sinusitis. I changed job to a less stressful one, but the pain continued and in approx. 2000 the 'sinus' pain was joined by an even worse pain actually inside the left nostril. This was a gnawing, tooth-ache-like pain which quickly became continual. I also started to get repeated infections of the trachea (windpipe), throat and larynx. Treatment was antibiotics for the infections and (for a short period) amitriptyline for the pain. Further x-rays and a small camera up the nose showed that I had several problems: (1) the septum was buckled and completely blocking the left nostril; (2) I have no sinus channels on the right side of my face due to malformed bones (probably at birth); (3) my left side sinuses were blocked; and (4) the airways at the top of the nose were too narrow. To be fair to the consultant, he did say that the buckled septum may not be the cause of the nasal pain: he thought it was 'atypical facial pain' but as the septum was buckled, he agreed to straighten it. So, in June 2002 I had my first operation to resolve all of these problems: the septum was straightened, airways widened, sinuses 'burnt out' to clear them; and a larger sinus hole made to improve drainage on the left side. The pain in the side of my nose disappeared overnight and for the first time in about 2 years I was pain-free. Hurrah! I thought I had 'cracked it'. 9 months later, in March 2003, I felt as if a shutter had been pulled down inside my head. My sinuses were blocked and infected. Within the space of 6 months I had laryngitis 3 times, plus 3 chest infections, as the infected matter had nowhere to go but down my throat. I was prescribed a total of 7 lots of antibiotics until my GP wouldn't give me any more. Further hospital referrals showed that the sinus hole had completely healed over. I had my 2nd operation in September 2003 to open up the hole again. At the time I had the surgery, my sinuses were infected, and continued to be so for the next 3-4 months. I was on more antibiotics, and also had to wash my nasal passages out daily to snort out the gunk. Disgusting. In January 2004, the hosptial ENT consultant (the same one who'd seen me & operated on me twice before) confirmed that the sinus hole had healed over for a second time. Apparently this is really uusual. I was booked in for a 3rd operation for May 2004. At the beginning of March 2004, the pain in the side of my nose returned, quickly followed by excruciating pain in my teeth and jaw - left side both upper and lower. A trip to the dentist confirmed no teeth problems, and he thought it must be my sinuses, so it was back to the GP for more antibiotics. I naively thought the surgery would sort it all out. I woke up from the 'op. in May 2004 in as much pain as ever. Since then, I've had more or less continual nasal pain, radiating out into the head, eye socket and jaw/teeth - all on the left side. At the beginning of July 2004 I was diagnosed with Sluder's Neuralgia. I was put on Amitriptyline and something else (can't recall) and am now on Gabapentin. My ENT constultant has referred me to a pain clinic (I'm waiting to hear from them) but warned me that the services were withdrawn last year because they were found not to be very effective, so I am not holding my breath for them to be the solution. He seems reluctant to operate again, alhough he has said he will surgically remove the nerve-ending in the nose, if I want him to. However, he is pessimistic about this being a long-term solution because (apparently) the sufferer often feels 'phantom' pain after such operations. He also seems reluctant to refer me for a second opinion, but I may insist on that. He is more or less saying I have to live with it and cope with a life on painkillers. I'm not keen on that idea, and keep thinking he may be wrong and surgery will be the answer. However, I don't know for sure, and don't know where to go or who to consult to find out. There seems to be a lot of research and support for other forms of facial neuralgia, but not for Sluder's. The pain is now bearable - whether that is because of the Gabapentin or in spite of it, I don't know. Some days I feel quite OK at the moment. Incidnetally, about a year ago I also started having problmes with my short-term memory and concentration. This got very bad this summer, so I have been referred to a neurologist by the GP. For me, triggers for the Sluder's neuralgia include (in no particular order): tiredness, crying, lack of food, cold air, smoky atmospheres, bright lights, loud noises, too much time on a PC, driving more than about 2 hours without a break. So I avoid all of these. Relief comes with: sleep; lying down in a very dark room (blackout curtains used)with a cold compress on the left eye/nose. Sorry to be so long-winded. If anyone out there has found an expert in Sluder's, or an association or self-help group, I'd be really interested in the details, as so far, I have drawn a blank. Thanks.
Name: Lori I would like to tell someone about something that has worked for me. I was diagnosed with TN when I was 30 years old and I have had TN for 7 years. I went through all the same actions taken for others with TN: Dentists, Doctors, ER's, Neurologists/Surgeons,Meds(Carbamazapine 1200mg per day!) Neurontin, Baclofen, Phenytoin, Vicotin, Percocet etc., and I had the Glycerol Injection 2 times. The first time I had the injection, I was pain free for 8 mo. The second did nothing. I have however fought off 5 bouts of TN by using Wellbutrin and an over the counter sinus medication. The neurologist laughed at me when I told him about it and said they never prescribe antidepressants for TN patients-Im the only one he knew of that had. I found this by accident, I went to my primary care doctor and wanted wellbutrin for quitting smoking. At the time I saw him, I was and had been for a month, been in severe pain with a bout of TN. I had a bout that lasted 10 months in 2001 and wanted to die, if only I had learned about this sooner!!! I want people to know in case it may be something they might want to try, what can it hurt, they are already in pain? Keeping my sinuses cleared through over the counter meds also has an impact and I need both in order to tame the bout. But it works for me and I still live with extremely mild pain, on occasions, but absolutely not like I had before! I have researched antidepressants and what they do and I know alot about TN, and I do not understand why no doctors have ever looked into using antidepressants for TN because if you look close enough, you can see that the chemicals that are messed up because of TN are very very similar to the affects of what chemicals in the brain that antidepressants can fix/change.( In any case those patients are also depressed, I know I was, I felt like I had no life!!! )Please dont think Im crazy like the neurologist did, please tell people about it, maybe just maybe, it can help even one other person! I know I did lots of things to get rid of the pain, and they should have that chance too! I felt the same as most of them. If you would like more history from me, feel free to contact me any time. My address is above and I have 7 years of TN stories, as do my husband of 16 years and my daughter who is 14 now. She was my nursemaid(at 7 years old)when her father was at work and she wasnt in school. We have been through sooo sooo much with this and we are finally back to some sort of living again, as a family. My husband was so happy to be able to kiss me again after such a long time! I hope that you will take my letter seriously, and if you do, I hope I just helped someone else! Thank you Lori Name: "Maggie" My experience with TN started suddenly about 3 years ago. The pain just came and got worse. On a scale of 1 to 10 it was about a 16. People tell me you can't have a 16 on a scale of 1 to 10, but I try to explain that the pain of TN trivializes all the other severe pain that I have ever had. I had not cried over physical pain since I was a child, but I became hysterical; crying and screaming. I felt as though a T Rex had just leaned down and bitten into my right jaw and never let go. I am so fortunate to have good docs, but my doc immediately put me on Neurontin with instructions to gradually increase it, but by the time I got home I was crazy with pain. I had some pain meds, but they were not working. By 11:00 that night my husband had to take me to the ER. Nothing they tried worked. They took scans, etc. I am allergic to Hydrocodone and Oxycodone and Morphine doesn't work for me. They tried Demerol - didn't work. Finally they gave me big doses of Benadryl and gave me Hydrocodone anyway. Finally some relief. Eventually the Neurontin began to work, but by the time I got up to a therapeutic dose I was a zombie. I started falling asleep on the way to work and could barely make it through the day. I was seeing a neurologist by now and he weaned me off the Neurontin and onto Topamax. I have had good luck with the Topamax. I have some breakthrough pain from time to time, but basically I am satisfied. Until last week that is. I have serious, chronic migraines, so when I started having a stabbing headache in the left side of my head I thought it was a migraine starting, as that is where mine usually start. I took a migrain med, but nothing happened. The headache got worse. I found that my head was incredibly sore where the head was aching. It got worse. Then it spread to my ear and down my lower jaw. It was also painful to touch my jaw on the outside. I had an appt. to see a headache specialist in a large, nearby city on Friday about my migraines, so naturally I wanted her help with this. She said it sounded like TN. I told her I couldn't understand how I could get TN on the other side of my face when I was taking meds for it already and they are working. She is sending me for a huge round of MRI's and two rounds of BOTOX injections 3 months apart for the awful migraines. I had one round several years ago and I am NOT looking forward to it. With all that going on I forgot to ask for a prescription for some stronger pain meds. When I got home I found that my family doc was on vacation and he couldn't call in my meds because you have to take the prescription in. I had biopsies on both sides of my head when I began to have the migraines because they thought I had Temporal Arteritis, which can cause sudden irreversible blindness. I don't remember having this awful headache with the TN before, but the jaw problem is quite familiar. I can't even eat on that side or drink - I'm sure most of you know about that. Anyway, I wasn't willing to take the chance on losing my vision to Temporal Arteritis in case the doc was wrong, so I started myself on big doses of Prednisone, which is the treatment for Temporal Arteritis. I have to take it several times a year for my asthma, so I always have some on hand. I am setting my alarm clock for 3 AM so I can take what pain meds I have because I woke up at 6 this morning in agony and it took hours for the meds to take effect. I am alternating Ultram and Darvon with 1000mg of Ibuprofen and it still hurts. I understand why they used to call TN "suicide disease" before they had decent pain meds. AT one point my neuro suggested surgery, but as long as the meds were working I didn't want to take the risk. I hope they figure this out quick. Name: Marjorie It seems I have always had pain of some sort..I have diabetic neuropathy and diabetic amyotrophy..I had monthly problems and had a hysterectomy..I was hurting badly and went to the ENT Dr..no sinus infection..it is neuralgia..tmj..which I have been told before..I am already on 3200mg Neurontin and Nortryptline..he said he was surprised..but put me on Viox..the thing is I do not really want to take something daily..I would rather take it only when I am ready to pull my hair out of my head..!!..it seems when I get hurting nothing..NOTHING..takes the pain away..does anyone know why you can hurt so badly one day and the next day it is gone..I find no answers.. I am glad I have found this site.. ame: AJS I have had pain in my lower right side of my jaw bone and my right ear since October 2001. The pain started with just a burning sensation in my lower gums and a dull ache in my lower right jaw area. In the last two years, the pain has become so much more severe (but the pain is ONLY in my RIGHT ear and the lower RIGHT jaw) that there maybe weeks when I have real difficulty in talking at lenghth, sleeping at night and chewing food. Gum disease has been ruled out. I don't have any ear or sinus infections -- they have been ruled out. The dentist and oral surgeons think that it may be due to overcrowding caused by my lower two wisdom teeth (although my pain is only on the right side). I have been wearing a night guard at night for almost a year now but it hasn't helped much. Anti-inflammatory medications, tylenol and muscle relaxers don't make any difference. The serveity of the pain becomes worse when I am under emotionl stress or if haven't had enough sleep or if I am constipated. The oral surgeon now wants to perform two painful wisdom tooth extractions but is not certain if this will help. Has anyone had this kind of experience? Thanks! Name: Tina Hello my story is a long one. After blow to head and a bad viral infection (both happened around same time) don't know which caused it. I started to notice burning in ear and mouth. As all of your have done ent's tmj dr neuro etc. Pain got worse with hours of intense burning in mouth ear jaw inside with ocassional lighting type severe pain when it was real bad. Neuro diagnosed tn first later tn and glosso neuralgia. However I think it is all or mainly glosso. Large doese of neurontin up to 5300 at one point mixed results nortriptelene up to 150 in combo with neurontin worked somewhat. Tried trileptal and that seemed to help the most in combo with other drugs. After one year and half with trileptal with other drugs started to feel a little better decreased neurontin first (hate the drug) and some nortripltelene started using capsaisin creme outside on right in front of ear neck behind ear. That helped more within few months went off completely all meds pain free med free 7 months pain free l year or more completely. Bad news it came back 2 weeks ago. Started with cold and sore throat and sort of inflamed and woke up nerve. Started with trileptal gave me a real bad rash took benedryl to get rid of rash out of it for a few days. In the meantime started taking a new drug keppra 1000 mil did not do it. Went up to 2000 really bad tiredness and dizzy trouble driving. Neuro said I need to be on the med for a while and side effects should go away. We'll see. In the meantime good pain control so far only on one week. But I am very impatient as I was recently spoiled being pain/med free. If the side effects are too unacceptable, Too tired to work, etc. I will have surgery. The question is: Anyone out there have the glosso nerve cut. That seems to be the recommended surgery for the glosso nerve. Also need to know if pain similar to mine. Many thanks. Any info would be tremendously appreciated. Tina Name: "Suicidal" ...---...---...---...---...---...---...---...---...---...---...---...---...---...---...---...---...---...---...---...---...---...---...---...--- The doctors do not know what they're doing Name: "Fishie" I HAVE HAD TN FOR ALMOST 19 YEARS. I HAVE HAD 7 SURGERIES TO TRY TO CORRECT IT AND HAVE TAKEN MORE TREGRETOL AND NEURONTIN THAN A PERSON SHOULD HAVE TO TAKE. MY NEUROSURGEON HAS GIVEN UP ON ME AND TRIED TO SEND ME TO OTHER DOCTORS, BUT I HAVE REFUSED, AS I FEEL THAT I AM JUST BEING USED AS A LAB RAT. I FEEL THAT GOD DOES NOT GIVE YOU MORE THAN YOU CAN HANDLE, BUT THIS BORDERS ON IT. MY HEART GOES OUT TO ALL OTHER SUFFERERS OF THIS HORRIBLE DISEASE. I AM GOING TO TRY TO FIND SOMEONE WHO CAN FINALLY GET RID OF THIS DISEASE. IT IS NOT POSSIBLE FOR ME TO GO OUT OF MY STATE, AND I HAVE ALREADY HAD ONE OF THE TOP NEUROSURGEONS OPERATE ON ME, SO I GUESS I WILL KEEP TAKING THE MEDS AND HOPE FOR THE BEST. BUT IT IS GETTING TO THE POINT THAT I WILL HAVE TO HAVE MORE, AND THE SIDE EFFECTS WILL KEEP ME HOMEBOUND AS I CAN'T DRIVE AND TAKE MORE THAN I AM TAKING NOW. THANKS FOR LISTENING.... Name: Arthur I had Shingles in Set. or October 1982, was initialy trated with Haldol, which made me feel Out of this World. Subsequently treated by Neurologist who prescribed Tegretol. Later he added Lydex. Later Neurotin was tried. I am 95 years of age. in August. Tegretol and Neurotin. both were discontinued for each of them made me fall. am presently in an Assisted Living Home, the Maryland Masonic Home, iI am not a physician. Currently am taking nothing, using Lydex to deaden the pain, most every day. Is there any help for me? Name: Diane This is just a note to add to my earlier e-mail. I did have a MRI scan that showed a Pineal Cyst but my doctor said that it does not cause my pain. I would like to know if any other sufferers have this type of cyst or cysts. Name: Diane StoryHello, I was amazed to find so many other people suffering the same as me, my doctors always made me feel like some neurotic woman who's hormones were in over-drive!!! I have had loads of different medications: Beta-blockers, accupuncture, carbamazapine, 5HT antagonists for the treatment of suspected migraine (which they thought I had for years) prozac, seroxat, amytriptalin and numerous over the counter medicines for migraine also feverfew herbal tabs. My life has been hell for the last 20 years. Finally,at last, one doctor tried me on Gabapentine and it does give me some relief coupled with Co-Codamol 30/500 and Tegretol Hydrocholride both taken to excess every day to get some sort of relief. I also take Mirtazapine 45mg at night which 9/10 gives me a good nights sleep as the pain has been known to wake me in the night. When things get too bad I make a hot-water bottle as hot as I can stand and then sleep with my face(left side)on that(it does give relief). At times,before Gabapenin, I would be found sobbing on my bed by my husband because of the pain,he would hold my head in his hands and try to comfort me, HE IS MY ROCK, without him I would have given up long ago. I have had all my teeth extracted on the left side because I was convinced it was the teeth that were giving me the pain but of course the pain was still there constantly the same as before.Thank you for a wonderful web site. I do hope that all the sufferers out there find some relief from their pain. I now know that I'm not going mad and it's not imagined and I now feel like 'I belong' to a unique club and I know just what you are all going through. I have Dental Surgeon friends (I'm an ex-dental nurse) and have a referral to hospital(one I haven't been to yet!!) so I'm hoping that they will be able to help me. Best wishes. Diane Name: Ana L My pain started in 2001 when I was awaken by this horrible pain in the middle of the night and I attributed to past sinus problems. Since I didn't have insurance the pain kept on. Sometimes once a week and I would take over the counter Excedrin and after a while it would go away. Three months ago I got a job that offer Kaiser and in March I underwent a provedure for my sinuses. The pain kept on they took x-rays of my sinus area and found nothing. I asked for a stron prescription and was prescribed Tylenol III w/codeine which would work sometimes and sometimes not. I was referred to a Neurologist, she prescribed Verapamil first and that didn't work, then Depakote and that didn't work. In the meantime I was getting dental work done and tha pain intensified but we all thought it was the rotten teeth I had. I had a root-canal and ended up getting the tooth extracted and started another root-canal because the dentist could not understand why I was in so much pain. I could not sleep he prescribed Vicodan and that didn't work so I was at my wit's end. I have made 6 trips to the dentist in one week, lost one tooth and started another root-canal and the pain was excruciating, all I could do was cried. I felt so helpless. I guessed it was a good thing that I had lost my job 3 weeks before because I would not be able to go to work in such pain. Loosing my job now means I will not have medical care so I don't know what I am going to do. In the meantime I thought of this really good dentist I used to go to in 2000 when I had dental insurance so I called the secretary and explained what I was going thru. I had to get my x-rays from the present dental clinic and bring them to him which I did in the middle of the pain, I remember crying in the car as I was doing all this driving but I was determined to find out what was wrong with my mouth and stop the pain. Dr. Phil as we all call him (this is before the other Dr. Phil became famous) check my mouth thoroughly, one by one of my teeth, stuck his fingers inside my mouth all over the place, check my x-rays very carefully and listen to my story and the description of the pain, which at the moment I was feeling intensely. He finally said "I think this pain you are feeling is called Trigeminal Neuralgia" he gave me a short version of what it was and referred me to a doctor he knew was an expert in this field. I went home and the next morning called my Neurologist at Kaiser because I am still insured until the end of this month. I explained to her everything and she immediately prescribed Carbamazepine 100mg. Last night was the first night I could sleep in days. I feel a dull version of the pain right now, it has not even been 24hrs. that I started the treatment, but nothing compared to what I have been feeling for the last 3 weeks. I will be calling my doctor on Monday and relating any changes. I don't know how to thank Dr. Phil for seeing me when I no longer belong in his patient's list and for his diagnosis. I have been reading since then and I am horrified at all the wrong things I have been doing and have been done to me. All thee dental work that could have aggravate the nerve, the local anesthesia they use is an aggravation to the nerve and they have injected me so many times in three weeks that I am surprise I was able to take this pain. This is my story I think that Dentists should be given more information on TN. In my case I was blessed with Dr. Phil but God only knows how many other people are suffering without any help or understanding whatsoever of this horrible, horrible pain. I will be praying that I will be able to pay Cobra somehow on unemployment if I qualify, so that at least I could be under the care of my Newurologist. If I had any money I would totally go fot that Microvascular Decompression procedure. Thanks for listening,God Bless, Ana L. Name: "Lil' Name: Charlie I suffered for 5 years with nitwit Dentists and Doctors before a friend diagnosed me. His mother had it as well!!! I tried all the usual drugs which would work fairly well. Then, after a point they would quit working suddenly. December 12, 2003 I had Cyber Knife radiation treatment at Stanford Hosp. which was a failure. I then found a fantastic Neurosurgeon here in Santa Cruz that performed Microvascular Decompression surgery on me February 12, 2004. The pain is all gone and I found a Doctor that I like and trust. I am having a terrible problem related to the radiation treatment though! The entire right side of my face has gone numb and tingly, and the intensity is increasing. The Doctors are all clueless regarding this and I'm finding through the web that this is common to many who use radiation to treat TN!!! This is nearly as bad as the TN pain. Stay away from radiation and find an experienced surgeon. Any other folks out there with facial numbness? Good luck to all, Charlie Name: "Sapphire" I had formerly been told that I had- migraine, swollen lymphs, infected throat, was making it up. I was given antibiotics, allergy medicines, painkillers - which gave at times only temporary relief. Constant trips to the doctor and insisting that the pain was real led to today's treatment. I have now started. Name: Caprice I have been suffering from facial pain for over 3 years now. Was somewhat diagnosed 2 years ago with Trigem - then was told no TMJ - then back to Trigem / Atypical Trigem - and the latest is Aytpical Facial Pain. I do not care what they call it just fix it!!! Have had all the tests no organic reason to explain, almost deperate enough to want a cancerious tumor at least it would be acknowledged. I have been on gabepetan, neurotrin, tegratol (the worst), Elavil, Zanaflex, and now Depokote 750 mg. with zanaflex in the evening. Unfortunately not working well this week but was doing ok for awhile. This all began with a root canal, dentist hit a nerve my leg shot up involuntarily it hurt so, never the same since. I will keep trying. Had to go to part time at work, reduced hours mean reduced means, do less now, come home go straight to bed. I am unable to function normally, have to sleep 12 + hours to function at all. My daughter misses her mother, I am only 37 years old can not wait until they figure what is wrong and fix it. Going to new neurosurgen on 30th, wonder what diagnosis I will get this time. Name: Annette I was diagnosed with Trigeminal Neuralgia in the year 2001. I was put on medication which worked once I remember to take it. In August 2003 I had an operation which was successful, now I am pain free. No more tablets - thank God. I spent 3 days at hospital. My Dr. explained before the procedure. An incision was made at the back of my left ear and the Trigimenal Nerve was coated and thats it. Sometime ago I used to be in contact with someone on the internet who told me there was no such procedure but there is and I hope everybody with this sickness can do like likewise and discuss with the Specialist as to procedure just make sure the doctor is specialised so perform such operations. The name of the medication I took was carbamazepine CR 200MG. Name: GLORIA I WAS DIAGNOSED WITH TN 9/92 AFTER GOING TO SEVERAL DENTISTS HAVEING 2 TEETH REMOVED , THEN NEUROLOGIST, I HAD STEROIDS INJECTED INTO MY FACE,THEN ACCUPUNTURE WHICH ONLY MADE IT WORSE (HORRIBLE FLARE UPS )I WENT ON DILANTIN , AND TEGRETOL WHICH PUT ME IN THE HOSPITAL FOR 7 DAYS MY BODY WAS TOXIC FROM THE MEDS . THE EXCRUCIATING PAIN HAS BEEN ON THE RIGHT SIDE OF MY FOREHEAD NOSE, UPPER LIP,AND CHEEK. AT TIMES IT WAS SO BAD I COULDNT SPEAK MOVEING MY LIPS WAS UNBEARABLE , I WOULD GO IN TO EMERGENCY ROOM FOR AN INJECTION OF DEMORAL AND VICADIN FOR RELIEF..I HAVE BEEN IN REMISSION FOR ABOUT 5 YEARS (THANK GOD) BUT RECENTLYI HAVE BEEN HAVEING FLARE UPS ON MY LIP AND TIP OF MY NOSE , OF COURSE WHEN I BRUSH MY TEETH OR WASH MY FACE AND I AM NOT CAREFULL,I FEEL THE REASON IHAVE BEEN IN REMISSION FOR SO LONG IS THAT6 I TAKE HALF A LORTAB ITHE AM AND HALF IN THE PM....THERE IS NO RIME NOR REASON FOR THIS DREADFULL PAIN. Name: Charles I submitted my "story" on 11/03/03 and wanted to update. Since then I have been on Neurontin (3200 mg. daily) & vicodin at night for pain. I have had every test known to man--all negative. Since my pain began in July, 2003 I have been to a dentist, internist, ENT specialist, neurologists, infectious disease doctor; have done acupuncture, botox. In March, 2004 I went to Mayo Clinic in Rochester & had more tests done. Their diagnosis was Trig. Sensory Neuropahy. Anyway, the pain is not better, and it may be getting worse--on both sides of face and numbness all over face & inside mouth. Would love to hear from anyone who has experiences bilateral pain. Thanks very much. Name: rob I'm a 47 year-old male with TN. It has come and gone for about the last 8 years or so. Right now I have no symptoms whatsoever. I kept it secret from everyone for a long time because I thought no one would believe me if I explained this excruciating pain I felt on the left side of my face from time to time for no apparent reason. When I have this pain, it can be difficult to eat, brush my teeth, wash my face, fall asleep, sometimes even talking brings on the pain. Sometimes it's so intense that my eye waters and I have to stop whatever I'm doing. Finally, about a year ago I described the symptoms to my doctor. She perscribed Neurontin and ordered an MRI to rule out other problems. The MRI showed no abnormalities. The Neurontin didn't work. The pain continued for a few months, then subsided and I have been pain free for about 7 months now. I keep hoping it never comes back, but I know that eventually I will probably have a relapse like I have had before. There appears to be no rhyme or reason for the onset of this condition or for it going away. I'm concerned about taking stronger drugs that may have bad side effects. But if the drugs help and can then be discontinued or reduced, maybe that's worth a try next time. Reading about surgical procedures to relieve the pain has left me thinking this route is risky and a last resort. Any advice from anyone out there would be welcome. Thanks. Name: Zaffar My name is Terry, i am 56 years old. I developed Facial Pain Neuralgia over the xmas period six months ago. After the initial painkillers it seem are usually prescribed. My GP recommended Tregretol which has calmed the condition sufficiently to resume work and live a normal life. The on going symptoms are a general background burning- tingling sensation on the affected side-and down the back of my hand and arm on that side. The most discomfort comes in the form of an irritated- itchy scalp which requires a daily rinse through to calm things. I am asuming this is triggered by the Neuralgia. Also break through symptoms occur, triedness. My Neurologist has estimated a nine to twelve month duration. Please if anyone has any thought or shared experiences they are most welcome. Many Thanks Terry
Name: "blakely" I went to the dentist to have veneer's put on and when the numbness left my mouth the pain hit me. I have had pain now for three years. I do not know how I am going to stand this. This dentist has lost his license but he is on appeal. He had young ladies working in there that had never been to school nor had they been trained and they were working without supervision. One of them worked on me. I remember when I walked out with my temp's on the hygienist covered her mouth and said oh my God your teeth are so short. She later told me that he ground them down to the nerve. I have not been able to bite down on anything since that day. When I have an attack my Dr. tells me to take more medication and just get drunk and go to bed. This is no life. I can't believe that he is allowed to practice on anyone. I just scream with pain all of the time. I have read where this does not cause TN but I do not believe it. I read too many stories about people leaving the dentist and their live changing forever with TN. I just need someone to help me. I am a strong woman and I was a professional woman. I don't even know if I am spelling correct I am so drugged up today I could not go to worked because I had another attack yesterday and today. Not good for a mortgage broker. They have to find a cure for this. Cheri Name: Paula Hi. My name is Paula. I am a 27 year old Australian woman. I was diagnosed with Trigeminal Neuralgia about 6 months ago. Initially when I was diagnosed, I was terrified, knowing that my grandfather died of complication of the same illness. It all started after some dental work - a large filling actually! I was chewing on some gum when I felt an electrifying pain from my tooth down to my jaw. I was in a meeting at the time and turned a pale white colour and started sweating. My colleagues were concerned for me but it eventually went away, leaving what was similar to the pain of a bad toothache. This happened several times a day, especially when eating. After a few weeks, the pain did not come from near the tooth, it would just hit me as very bad facial and jaw pain on my right hand side. I treated it with anti-inflammatory medication before going back to the dentist, believing I might need a root canal. The dentist tested all my teeth on the side of the pain. They all tested as healthy teeth, even the one that had been recently filled. I continued self-medicating with antiinflammatories and panadine for another few days until one day the pain was so intense that it made me vomit profusely and I had difficulties keeping my balance. I went to the GP in desperation, but still believing that the pain was as a result of the dental work and that it would subside after a while. The doctor had no doubts in diagnosing Trigeminal Neuralgia. He said that my symptoms are very typical of TN and that he has treated people with the illness. I feel lucky to have such an experienced doctor. I was scared but relieved that it was a diagnosable condition. I began taking Tegretol (200 mgs a day, then 300mgs) and Panadine. Out of sheer desperation to get off Tegretol, I turned to natural medicine, something I have always been skeptical of. I have seen a naturopath / acupuncturist who is confident he can get me off the Tegretol and reduce the pain to a reasonably comfortable level. With the help of this alternative method, I have been able to reduce the Tegretol to 100mg a day, although I do have some days where Panadine is needed also. The acupuncturist is confident that with 2 more treatments, I will be able to stop the Tegretol all together … we’ll see about that! I know that TM will not kill me but living with it is not easy. I am now desperate to get off Tegretol, as I want to start a family with my husband. All this has put our lives on hold until I "get better" but I just do not know when I will get better. Being on Tegretol has not made me drowsy but knowing that one should not take it if planning to get pregnant is a worry. How much longer will I be on it and will I ever be able to have children if it is a long term thing?? I have noticed that since taking Tegretol, my hair is thinning and my complexion is not as good. I thank the Lord for my loving husband and family who care for me so much. I only wish that I could deliver a positive response to their questions of "How are you feeling today?" and "How is the pain?" Maybe one day. Name: Allyson Hi all. Amazing to have found this site. Firstly, I am 18. This brings on a lot of feelings of 'I'm so young! How could this happen to me?'. I have not had TN for a long time (diagnosed only a few weeks ago), but I feel like I cannot suffer any longer. The worst part of it is that hardly anybody believes me, and they think I am just being a 'drama-queen'. I KNOW that this pain is real, and I know how horrible it can be. I've been on Tegretol for just over 2 weeks and cannot deal with the side effects. When I first started feeling the pain, my mom took me to our local dentist. He couldn't see anything wrong, but suggested root-canal treatment. This upset me, as I pride myself on my perfect teeth. By now I was on 6 Myprodol per day. My boyfriend suggested I go to get a second opinion, so I went to see our local GP, who diagnosed me with TN. I don't think he knows a lot about this horrible disease, as he told me it should be gone within a couple of days. I feel like strangling him right now... At this time, I was writing my final examinations, and I felt that I couldn't write them with both Tegretol and Myprodol in my system, so for the first time in weeks, I went without medication. I think I failed those exams. The pain was unbearable. I decided to try acupuncture. I made my boyfriend come with me, and I think I almost broke his hand due to all my squeezing. It hurt me so bad. Never again will I have needles pressed into a place I am having so much pain. She pushed into my cheek and made the needle go right through my cheek into my gum, and only stopped once it was against my tooth. I'm sitting here with a scarf around my face (I find it helps control spasms due to cold), and wondering who to go to. I think first thing tomorrow I'm going to call a neurologist. I can't deal with this pain much longer. This is depressing me. The most pain I am going through is that I have nobody to talk to, and nobody who understands me. Please please send me your emails and stories and advice or anything. I am looking forward to it, because at last I feel like I am not alone. Name: Sally Constant pain and burning for over three years now...tried everything . Has anyone tried/heard of PAP-IMI treating this???? Thanks so much, Sally Name: Betty Jo My name is Betty I am 17 years old and have been diagnosised with Atypical TN. It all started the last couple weeks of Cross- Country at first I thought nothing of it, then after a while it began to get worse. I have been to many doctors and I am no where ready to live my life like this I am only a teenager. I can barely make it through a day of school. Therefore I am failing all of my classes in my second semester of my Junior year of High School. I had to quit my job, and my whole world in falling on me. I have tried many things and so far nothing has worked. I hope to find something soon, so I can move on with my life. If anyone knows anything please contact me so I can hopefully finish High School and move on with my life. Thank You. Name: Peter Hello, my name is peter and i would like to tell you about my problem. I had a workplace injury in 1999. It all started in the left side of my neck a strange popping sound which realy didn't bother me much at first until a week later then my left shoulder arm and hand were in pain. My arm ached badly so did my shoulder which is always spasming .My hand also and my fingers became numb and tingly and i had to have an ulner nerve operation, this fixed my hand but my arm shoulder and neck are in constant pain. Scans and xrays showed nothing wrong in my neck so the Doctors say there is no organic reason for my symptoms. ( i don't beleive them )as i am on work cover know one wants to do anything to help it seems. i am still on workcover today 5 years later trying to cope with the pain and the lack of medical help im getting, I also now have cyatica and neuralgia aswell. my left lef is painful all the time, my left foot is tingly and my toes,the left side of my face has ached and my eye gets lazy and droops and in bright light my eye closes, my eye also aches all the time.This has been going on for 5 years and getting worse all the time.I also now have a floater aswell over my left eye. Back to my arm and hand also turn realy cold like its been in the refridgerator and i hold my left arm most the time with my right hand. no medication has helped me and i am finding difficult to get on in life, i can't use my left arm for anything realy, can't turn a tap on for example and my face is so sore i can't focus on anything.This has put me into a depression and sometimes i am suisidal and want to take my own life.While all this is going on i have to answer and prove myself to social security who failed me on a dissabillity and are forcing me to look for work, i am not adissabillity case but i have so much pain i can't get a job and keep it with what is happening to me. I am very angry with the system and hate the world and can't wait till i die and leave this awful glorified slavery place.I am sorry if i have got of track here a bit but thats what all this has done to me. Through all this i have lost my partner, my home, my car. I am only 39years old, 5 years ago i was a strong healthy man, now i am ready for the nursing home and i don't know how to stop this happening.Sorry again next time i will try to put down the medication i have had to have but hasn't worked. regards peter. Name: "Tracy" I'm 41 and I'm new at this. This is my story: In the spring of 2003, I was diagnosed with Miniere's disease (it's a progressive condition that when it's active, I have no sense of balance, I have severe dizziness and can't do anything. My ENT told me that the only treatment was gravol and complete bed rest). In Aug/03, the dizziness came on really bad. This time, I had double-vision. I called my ENT and he ordered an MRI on a priority basis. I was told that the test results revealed a "peripheral disorder" behind my right eye. Because the Miniere's disease was not active when he got the results from the MRI, he said that he was not going to treat the problem. He has since retired. About a month ago, I had a really bad sinus infection. I was prescribed an anti-biotic of the penicillan family. After 3 days of increasing side effects, my GP (general practictioner) told me to stop taking the meds. The sinus infection seemed to clear up and I felt fine. Last Wednesday, 05May04, I had an onset of chest pain. This occurs about twice a year. I've had 2 ECG's, a stress test and all the necessary blood work. My heart is fine and I have no blood clots. At the same time I had the onset of chest pain, I developed a severe headache. It began above my right eye, like a lightening-bolt and travelled left across my forhead. All of my upper teeth hurt terribly and it felt like they were going to fall out. I called my GP and he told me to go to the hospital. After 12.5 hours in emergency, on Morphine (and still having the headache), I had a CT Scan and a Spinal Tap and was diagnosed with migraine headaches. I was told that I would feel no pain because of the Spinal Tap, I was given 4 Percs (Percocets), told to stay off work for 1 day and return to work on the Friday and I would be fine. I did as the E.R. doctor recommended and returned to work on Friday, 07May04. Within 15 minutes, I could not sit at my desk due to severe back pain. The headache came on severely. I felt sick due to the severity of the pain in my head. My boss wouldn't allow me to drive home so a co-worker drove my car and another co-worker followed. I called my GP's office and was told that if I was feeling really bad to go back to the hospital. I went back to the emergency department and was seen by another doctor. I was put back on Morphine. He told me that he did not agree with the diagnosis of migraines because you don't just develop them at 41 years of age. Plus, I had a fever. He also said that the other doctor should never had told me I wouldn't feel any back pain because of the spinal tap. Blood tests and a urine sample were done. He reviewed the MRI of Sep/03 and told me that I had puss behind my right eye. He prescribed me with an anti-biotic and more percs. He told me that if the condition got worse, to go back to the emergency dept. I couldn't sleep because of the morphine. By Saturday night at 7:00 pm, I was exhausted. I slept for 12 hours, took my meds and went back to sleep for another 5.5 hours. I got up, ate a little and after 3 hours, went back to sleep for another 12 hours. I didn't go to work on Monday (I work Monday to Friday). On Monday night,I noticed that the pain was getting worse. Up until this point, I had it directly above my right eye and down into my right cheek. At 6:00 pm, I noticed the pain moving directly down in a straight line, into my teeth. I called my Employee Assistance Program and spoke to one of the nurses on call. This was at 1:30 am. I said that I didn't understand how the doctor could make a diagnosis based on an MRI from Sep/03 without having an up-to-date MRI for comparison. (I never thought of this while I was in the hospital, because of the morphine, I guess). The nurse told me that I needed to see a doctor within the next 24 hours. I decided to go back to the emergency department since all my records were there. It seemed as though the intake staff, the nurse and the doctor were annoyed that I was there. They asked why I didn't follow up with my GP. I said that I was told to come back to the emergency if the problem got worse and further to that, I didn't notice the condition getting worse until 6:00 pm, which is after my GP's working hours. With alot of attitude, the emergency doctor tapped my face and told me I had a pinched 5th nerve. He said that I needed to see a Neurologist but it wasn't an emergency. (I guess he's never experienced this!) Confused and getting desparate, I called my GP this morning and was told that they could see me next week. I said that I needed to see him this week and that I've been off work since last Wednesday. They told me they'ld squeeze me in on Friday afternoon. I decided to go see my dentist to see if there were any problems with my teeth. Last year, I had all my old fillings replaced and I go for cleaning every 3 months. My dentist took xrays and told me that I had TN. She said that she was very well versed with the condition. She called my GP to discuss it but he was off due to a funeral. She said that I needed an MRI ASAP and to see a neurologist. She told me that pain meds would NOT help because of the way TN is. She said that it needs to be treated by meds used for epilepsy. My GP and my dentist are going to discuss my case tomorrow. I asked the dentist if it was appropriate to be off work right now and she said absolutely. I seem to sleep only every 3rd night. The pain is steady with lightening-bolt "attacks". My questions are as follows: Is it normal to be off work at the onset of this condition until the diagnosis has been confirmed ? If not, how do I cope with the pain ? I have a desk job, where I'm on the phone constantly and it seems that too much talking flares up the pain in my cheek. Even though I was really boosted with Morphine for the spinal tap, I could still feel the pain in my face but it was alot more tolerable. In your experience, do pain meds provide at least some relief ? I would say that on average, I have eaten once a day since this began. I tend to lose weight quickly and would guess that I've already dropped 10 lbs. Is this normal ? What about the waves of nausea ?
I would appreciate any advice on what I should be cautious of. I know that I need an up-to-date MRI but other than that, I don't know what I should do. I get that I'll have to follow the doctor's advice but the more I've looked into TN, the more concerned I am about getting inappropriate treatment.
Name: abbie I finally went to see my neurosurgeon and he told me that there wasn't anything that he could do for me. I guess I reach the end of the road. He's going to suggest comprehensive pain management for me through my neurologist. I traveled 4 1/2 hours one way for a 20 minute consultation to no avail. AFP is inoperatable and he did say that if I kept searching out surgeons that soon or later I'll find one that will operate only to meet his morgage payment. True story!!!!!!! I left his office crying, now what?!!!Anyone suffering from ATP, please don't let anyone tell you that it's operable because it isn't. If they knew where the pain or nerve is coming from that's different. They just can't guess. Trigeminal neuralgia was ruled out on me also. He didn't even suggest nerve blocks either. The neurosurgeon that I saw is one of the "Best" in America too. Now, I got to wait and see what kind of treatment is ahead for me. I'll keep you all informed Name: abbie good morning to all of my fellow suffers of this dreadful disease. I finally went to see my neurosurgeon Dr. William Friedman whom is one of the best in America. He told me that there wasn't anything he could do for me. Atypical facial pain is inoperable. They can't operate on something that they don't know where the pain is coming from. He out ruled trigemianl neuralgia too. He did say that I could keep seeking out neurosurgeons and maybe one of out the five will operate because he needs to pay his morgage payment. Quote, unquote. I left there crying because this pain in the side of my nose is a piercing, bone crushing type that extends up into my left palate. He did say that he'll recommend comprehensive pain management to my neurologist. that is all that can be done at this point in time unless something surfaces. Well after seeing five neurologist, ent, oral surgeon, three dentists, mri, mra, cat scans and the final a "neurosurgeon", I have to live with this the rest of my life. They plan on making me see a psychiatrist because I'm depressed. I've also heard that the dea is going to crack down on doctors and pain management centers also. At this point in my life all that can be done for me now is to put me on narcotics. The other med only help me some what, but now I need opiate drugs to help relieve my break through pain. I'm 51 and I wonder how this ever came about. I'm going to get dressed and I'm going shopping. I guess that I must get use to living this way the rest of my life so each day from this day, I will thank god for giving me another day above ground and to carry on the best that I can. All of you whom have been diagnosed with atypical facial pain such as I even though the pain isn't quite as debilitating as trigeminal, I feel it is alot worse because trigeminal can be fixed through brain surgery. After I've been seen through pain management, I'm going to attempt to work. I need to function as a human being. I can only hope and pray that someday this nerve or what ever is causing this pain, will burn itself out or through the grace of God something will surface. God bless you all, abbie Name: Sue My partner was recently given an injection of an anti-inflamatory called Toradol. He was given this after his worse attack yet when both sides of his face "went off" at the same time. I first took him to an afterhours doctor who gave him an injection of 10mg of Valium which gave him no relief at all. She them suggested that I take him to the ER at the hospital. They gave him 2 shots of 5mg Morphine and this Toradol. The same thing happened the next night so we went back to the ER and were treated with the same meds. They said that neuralgia is the worst pain in their profession and that they really had no idea how to treat it. They did though suggest that he get a script for oral Toradol. The good news is that since taking the Toradol the pain is the best it's ever been. So those of you who have tried everything else, here's another for you and I truly hope that it helps you as much as it has helped Brad. We would love to hear any advice that any of you may have for us. Please feel free to email me. This disease is a terrible thing and I sometimes think that even though we "partners" can't feel your pain, it is a very difficult thing for us as well. Name: "Sandy" hi my name is sandy i only get this in the hot weather or humid weather is this what a lot experience altho it doesn t last long it is extremely painful Name: Steph I HAVE HAD TN FOR TWO AND A HALF YEARS AND AM VERY NEARLY CURED WITHOUT DRUGS OR SURGERY!!!! I am 26 and know how terrible and terrifying the pain of TN is. It ruined my life for 2 and a half years and social situations, a hair brushing my face, the wind, applying make up, even smiling could result in agony. Then there was the fear of wondering when it would next strike. It also made my stressful job as a teacher very difficult to do. I tried all sorts of drugs, acupuncture and even hypnosis but although some of these helped a small amount I still suffered pain. Carbamazepine in fact was useless and turned me into a sleepy zombie! I have wanted to commit suicide at times and lived in terror, finding many social situations a worry. However, four weeks ago at an ideal homes exhibition in London, my parents can across a stall that sold a device called 'Healthpoint' available in both the UK and USA. It is a hand held, battey operated electro acupuncture device invented by a doctor called Julian Kenyon who specializes in pain relief and complementary medicine. It is frequently used to treat pain in hospitals in this country and has a very high success rate, treating many chronic conditions such as TN. It cost over £200 but was worth every penny as I am now much, much better and estimate that soon my TN will be completely cured. I am now pain free after all this time. I can talk, smile laugh and even touch the TN points on the right side of my face without agony. I can live my life again. I treat my face for twnety minutes in the morning and twenty in the evening but wont go on and on about how to treat as it is in the manual. This really works and is medically proven so I would really advise you to give it a try. It is very clever indeed. Only side effect is that TN area feels very numb now although I can still feel touch etc..but soon will take my treatments down to once a day anyway, then after three weeks will phase it out. I believe that this can eventually cure TN but at the very least it will numb the pain right down and allow a person to do normal daily activities without pain. If it can help me, it can help all of you too. Name: Jean My mother was diagnosed with TNA almost 15 years ago. At that time she was 68 years of age. She kept it under control with medication(tegretol)for 6 years. The pain became unbearable and she was told that a procedure of injecting alcholol would relieve the pain. She readily accepted the injection and was pain free for about 7 years. Two years ago the pain started up again. She has lived with recurrent bouts of pain for 2 years and after family intervention(we did not want to see her suffering any longer) we took her to her family doctor. He told us she was already on the most medication she could take (it was making her dizzy) and because of her age nothing could be done. On our begging we asked to see a specialist. She wasn't eating or talking as the pain too great. He referred her to a neurologist who prescribed Nerontin to be taken as well as the Tegretol. She took it for a month but to no avail the pain was still there!!! Her only option was to see a neruosurgeon. She had an appointment in 2 weeks!!! (we were told it would take a year to get in!!)That is how bad she was. Nothing was working and she was starting to deteriorate. She could not go outside(wind,air on her face)...she could not eat, she could not talk...He discussed Microvascular Decompression. Somewhat reluctant to have this type of brain surgery my Mother was beside herself worrying about the outcome. But she had no other option. She is 83 years old. She wanted to share with you the outcome because she is upset with herself for not having it done sooner. 5 days after the surgery she came home and is well on the road to recovery. She had instant relief from the pain. She no longer takes Tegretol or Neurontin. They found the problem immediately and padded the area so it will never trigger the pain again. She has a small incision (the size of a quarter) under her ear and that is all!!I had obtained much information from this site for this condition. I had ordered the book so I could understand it better. I am so thankful for all the information I obtained so readily from this site...My mother wanted you all to know that even though the operation is very stressful it is well worth it. She is upset with herself for having put up with the pain for so long!!! Please consult a neurosurgeon about this operation. Do not suffer any longer....my mother is 83 and age has no bearing on the surgery....You can do it and look forward to living a great life ahead!!! Name: Steve My first experience with facial pain was in 1998 following a shoulder injury. The pain acted as a "fireball", moving around my body from shoulder, to my other shoulder, to my chest and elbow. Finally, I noticed I was having "teeth pain", but the pain in my shoulder disappeared. Using Dr. Sarno's TMS techniques, I was able to rid myself of the horrible pain after about 2 years. However, I've had a recent flareup of it 2 weeks ago. The pain is located in the right side of my jaw and teeth and is continuous. It burns, jabs, dulls, etc. Is this atypical face pain? Anyway, for those who have tried everything, I recommend reading Dr. Sarno's "Healing Back Pain". It has cured many people of fibromyalgia, myofascial pain, back pain, etc, all of which are derivations of TMS. Name: Jonathan My name is Jonathan Kenaya, I am 20 years old. My father has been suffering from Trigeminal Neuralgia for 4-5 years off and on, he is 57. He has been on a plethora of medications which temporarily "help". He works two jobs as a butcher and pretty much refuses to not work because of our current financial situation. These attacks have been occurring more frequent than usual and it is becoming too much. The medications (Neurontin, Motrin 800, Vicodin, Carbitrol) have become helpless. We try to make appointments with any and every neurologist and surgeon in the metro-Detroit area, but they all give us a 45-60 day wait for even a consultation. He is a diabetic and his blood pressure is stabilizing at a constant 180 over 110. I do not know what to do anymore. I have never seen him like this. He never allows anything to phase him, or his family to see him in pain. But this completely submits him and drains all his strength in the process. He keeps telling me to take care of my mother and 2 older sisters. I know the TN itself is not fatal, but some of its effects could be. Please, I am asking you, because of your extensive knowledge, for, if not a solution, some advice. Thank you for your time. Sincerely, Jonathan M. Kenaya Name: Chris In august 2002 i was subject to an unprovoked attack in which i took a heavy blow to the face, leaving me with a broken jaw in 3 places. I had to have surgery and now have to live with 3 metal plates in my jaw. 6 months on it seemed to healed well, but i started to notice pressure like pain in both sides of my face. As the weeks went on the pain started to increase and was making me feel unwell with headache like symptoms. I went to see my Doctor who tried me on medication for migrains which was a total waste of time. Every day I was getting this crushing cramp like pain in my face, also stiffness in the back of my head and neck with no relief whatsoever. More recently I was refered to a rheumetologist who suggested that it was something to do with the nerves in my face being damaged by the surgery. He put me on Amitriptaline which I started on the lowest dose which didnt help at all. I have been suffering bigtime with the symptoms, and is forcing me to give my full time job. At the moment I feel like iam fighting a lost cause and cant see any light at the end of the tunnel. My next step is to get an appointment at the pain clinic. fingers crossed!! Name: john THIS IS WHAT HELPED ME GET A GOOD NIGHT'S SLEEP DON'T WATCH MUCH T.V I TAKE VITAMIN B AND B-12 AND VITAMIN C & E AND L-LYSINE ONE TABLET OF EACH A DAY I THANK GOD IT SURE HELPED ME. I HOPE IT HELPS SOMEONE JOHN Name: Beth In June 2003 my top, back, right molar was cracked. I went to the dentist and he said that the decay from the crack went very far down. He cleaned it out and put on a temporary crown until my permanent crown was ready. When I went back to get the permanent crown put on I told him that I was experiencing soreness in my upper teeth and that the soreness moved around to different teeth. He told me that my bite was probably off and not to worry. He put on the crown with temporary cement because he wasn’t sure if I would need a root canal or not. At that time, I was preparing to do RAGBRAI (7 day bike ride across Iowa) with my husband on our tandem. He gave me some penicillin to take on the trip just to be safe. My teeth hurt every day on the bike ride, but once again the pain would move around to different teeth and mostly be on top. When I got back from the bike ride I called the dentist and described my pains. He referred me to an Endodontist and I was told to go get a root canal. I gave the Endodontist (August 2003) a brief history of what had happened with my tooth and told him that I was wearing a crown with temporary cement. He numbed me up and went to work. When he was done, he looked at the xrays on said “oh, I might have to go back in” and two seconds later he said “no, you’re ok” and then he shooed me out the door real fast. On the way home I felt a hole in my crown and figured out that he had drilled right through it instead of taking it off first. Once I was numb and had the plastic shield over my mouth, I couldn’t tell what was going on. I called the dentist’s office to tell them he had drilled through my crown and they said that there were communication problems between the 2 offices and that they would pay for me to get a new crown made. I had to go back to the dentist’s office for impressions. When the dentist took off the damaged crown I told him I still felt “something” in that tooth. He put his tool up in the hole and asked if I felt anything and I said I didn’t. Then he said “well, that’s not the tooth” and his only other solution was that it was my sinuses. After the new crown came in and was put on, I still experienced tooth and gum pain on the top of my mouth, but always assumed it due to a sinus problem or bite being off. I just decided to cope with it. The first week of November 2003 my top AND bottom teeth and gums hurt tremendously for 2 days straight. I also had a behind the eyes ache and plugged sinuses. Then I started to feel numb on my chin. I went to the dentist and he checked out my teeth and said everything was fine. He said to give it a week and if I was still feeling the numbness, he’d send me to an oral surgeon. At the end of that week, my numbness had spread to my entire right side of my body. I decided to go see my general practitioner. I had a slight fever and when he tapped on my root canal tooth, it was sore. He said that I had either a sinus infection or needed a root canal retreatment. He took sinus xrays which indicated a likely chronic sinus infection and put me on antibiotics. By the end of that round of antibiotics, I was no better, in fact I was feeling worse. The numbness went away when I was on antibiotics but came back after I was finished taking them. I had ear pain, throbbing tooth pain and sinus pain. I went for a blood test (cpc, sedrate) and those came back normal. While we were waiting for the blood test results, the doctor prescribed Vicodin for the pain. I was then put on another type of antibiotics and Allegra D and nasonex. And I was referred on to an ENT doctor. My sinus problems did improve and so I continued taking Allegra D and nasonex. But all of a sudden my bite was majorly off. Also I started to experience “shooting pains” from the root canal tooth. My numbness that had returned, subsided again with the new antibiotics. I went back to the endodontist and told him everything I was experiencing. His response was “Sure, I’ll retreat you and the only thing it will cost you is a few needle pricks and 45 minutes of your time.” He didn’t see any infection in my tooth on the xrays and said my pain was probably due to my sinuses but he'd still retreat me. He made the comment “If your sinuses are still bothering the tooth after the retreatment….just get rid of the tooth”. His policy was free retreatments for a year after the first root canal. I left the office but didn’t schedule a retreatment because I wanted to find out what the ENT doctor said. Before going to the ENT doctor, I went to the dentist again for a regular cleaning check up and told him everything that was happening. He blamed it all on my sinuses and said that root canals are pretty much a sure thing and it’s very rare to need a retreatment. He said to wait and see what the ENT doctor said. He also adjusted my bite a little and we started the process to get me a mouth splint for TMJ. The ENT was very intrigued by my numbess and ordered an MRI, Catscan and thyroid test. The MRI and thyroid test came back normal. My catscan showed thickening of the lining in the middle sinus – but he didn’t want to address that because he said that wasn’t causing my numbness and that’s what I was referred to him for. He referred me on to a neurologist. By this point I was getting desperate. The mouth and face pain along with the numbness just kept getting worse. I went and got the root canal retreated. A couple of days later I started wearing my mouth splint at night. And that’s when the constant 24/7 burning, stinging, needle/pricking sensations started. At first it was mainly in the gums on the top right side and later it spread to other parts of my mouth and face. The numbness got more intense and spread from the top of my head down to my baby toe on the right side. At times, it felt like someone was pressing down on my shoulder. The neurologist put me on Amitriptyline (Elavil) starting out gradually at 10 mg and working my way up to 40 mg by adding 10 mg every week. I took it at bed time and every time I increased the dosage, the next 2 days were tough - I was tired and on edge. Up to this point I had a few episodes where I experienced paralyzing pain shooting through my head. I always have some level of pain 24/7 but when these episodes occurred it was like someone was slowly turning up the volume of the pain intensity and kept increasing it until I could barely take it. One episode in particular I felt like smashing a brick over my head to get relief. The Elavil really helped me sleep through the night and before I started taking it I was up 2-3 nights a week. And since I was getting better sleep my TMJ improved dramatically. I still lose control of my jaw (it snaps shut on it’s own) at the end of the day, sometimes. But before it would do it’s own thing all day long. My body numbness is not as constant. Last week I had a follow up visit with my neurologist and he wants me to try Neurotin. I’m going on vacation next week and I am nervous about how the side effects will affect me (thank you to everybody on The List that responded to my email about taking Neurotin. I received a lot of valuable information). So as of now, I am trying to work through the pain. I work out regularly (cycling, yoga, pilates) and that has helped me deal with the frustration of my situation and to focus on something else other than the pain. My pain intensity changes daily. Sometimes I can attribute it to the weather (rainy days are not good ones) or something I eat. Other times, I have no clue what makes it get more or less intense. I am a stay at home mom with 2 kids in school full-time so I am lucky to have the flexibility to schedule things around my pain. I’ve cut back on going out and socializing. I rate my pain on a scale from 1 (less) to 5 (more) for my kids so that they know when I say I’m at level 4, I’m struggling to deal with the pain and there’s not much else I can do until it lets up a bit. I have found reading the TN-List archives to be very helpful. Many of the things I worry about ( i.e. future dentist visits, explaining your pain to others, etc.) has been covered and it really helps me deal with my ATN.
Name: Bolimar My 37 old wife have a balloon compression 4 weeks ago, We believe that she does not have TN Pain, however she have a pain on the same area, but it is only low jaw look like different from TN pain. We would like to share any input or suggestion with someone that have e similar experience or have a balloon compression surgery. Too many thanks Name: Jennifer Dec 2003, thought I had another "sinus infection". Pain along the maxillary sinus' into the ear and feeling like my ears were filled with fluid, especially the left side. After being treated with five rounds of antibiotics and allegra-d,the burning and fullness remained. CT scan of the sinus' revealed some thickening and a small cyst in the right maxillary. None of the "pain meds" helped. The burning was at times unbearable. No luck with Toradol or Demerol. Referred to an ENT, who did'nt think the pain was from my sinus'. He sent me to a Neurologist who diagnosed Atypical Facial Neurolgia. Started me on Depakote ER 5oomg. It seemed to help the first couple of days the the pain returned in full force. He doubled the Depakote and I have been taking this new dose for a week. It is helping a little bit. Will the facial burning and ear pressure ever go away? It is ruining my life. Name: Rich C. Pain began after root canal on tooth # 15( far upper left molar). It started with stinging and burning. I had the tooth root canaled a second time. the pain is continuous. not the typical Trigeminal neuralgia symptoms. I've been to at least six dentists,an ENT , 3 Endodontists , 2 Periodontists , 4 Oral surgeons , a Neurologist, and now a TMJ specialist , all with limited success. At best , a few days of remttance from pain. Neurontin was useless for me. Vicodin as effective as Baby aspirin. I have some relief with alcohol. All Xrays,Mri's , Pans, etc. are negative. After 2 years of excruciating pain, I'm ready to have it removed. This will be the 4th tooth I've lost. Has anyone else had a tooth pain such as I, and had it removed and experienced relief. Can facial Neuralgias cause one damn tooth to hurt that bad,especially above the root of that tooth. I'm also experiencing pain in my left cheek, and ear. I also get the feeling of numbness and tingling at times. and it always feels swollen and inflamed. Dr's find nothing wrong. Final note, I sometimes feel a slight tingling sensation on the left side of my tongue. The last Dentist I went too, suggested removing the tooth, and if the pain subsides, then we know it was the tooth, if not, then I have to come to realization it is a medical issue. I really hate to lose another tooth. Thanxxx !! Rich C. Name: Lawrence I have tremendous pain in on the right side of my face. I have to continually take pills and that doesn't take the pain away. I hurt in my neck going up to my jaw into ear, and up to my head. I do not get relieve from it, and am not totally sure what this is. My doctor says this is fibromyalia, but I don't think it is. My doctor has done some tests and cannot find anything wrong. Name: abbie It's been a year and two months since my first pain attack that occured on the left side of my nose. it's is now in the left palate and behind the eye and sometimes into the right. I pray to GOD that this doesn't comsume my whole face. I just was at the neurologist whom increased my neurontin to 2,400mgs and changed me from elavil to pamelor. I've been having alot of break through pain. I can't believe that it's been over a year all ready. I know that this pain is trying to break me and I can't really say that it won't. I pray every day that it doesn't take my idenity away from me so when I don't have any pain, I try to make myself pretty and do some exercising and walking, but I always have my cell phone with me. I need to go back to work. Sometimes I feel as if these neurologist just look at me as a fifty year old woman and nothing more. If there's anyone in S. Fl who knows of a good doctor to treat atypical facial pain, please let me know. Depression is setting in and I'm doing my best to fight it. My family support is all in PA, and my husband tries very hard to understand. I feel so along and sometimes wish I would just meet someone in person with the same disease. Thank goodness for this place. God bless everyone. I hate this monster with all of my being!!!!!!!!!!!!!! Name: "ben" I gave birth on a wednesday and by Saturday I was in the ER with severe facial pain...expecially in my upper right teeth. In fact, the pain started that day as a tooth ache. They diagnosed me with a sinus infection but the ER doctor suggested TN. I've had two Cat Scans, seen an ENT doctor and my dentist and regular doctor. Now I am with a TMJ specialist. I am being fitted for a mouth gaurd tomorrow. Honestly, I don't know who to believe. My pain is severe but I don't know if I would classify it as shooting electric kind of pain. It is more like a severe ache and pain in my jaw and it spreads to my temples, head and lower jaw. It was only on my right side for five weeks and now it has traveled to my left. The only sharp pain I feel is when I tap my top teeth to my bottom teeth, I then feel a sharp like pain. The only drugs I've been on are vicodin (only for two days), muslcle relaxers and anti-inflamatory. The pain went away for ahile and then it returned. Now my doctor has put me on an anti-anxiety medicine and that seems to help. Do you think this is TN? I am very curious to hear from you. Name: "Dr. P" Have had TN for 10 years. Suffered 5 months until a wise dentist referred me to a neurologist who made initial diagnosis. Five years from initial onset in right side, I developed TN in the left side. Had cranial decompression surgery 1999 on right side - very successful. Had Radio Stereotactic X -Knife surgery for left side - NO success! Now on very high doses of Rx'sand have to have blood tests quarterly for toxicity and liver/kidney damage. How much longer before I can resume a "normal" life? Who knows........ Name: margaret recently diagnosed with TN, looking for help, advice, answers........second occurrence, 3 weeks apart, escalating in intensity, Currently experiencing 2nd week of incredible burning, electrical shocks, more than 100 times a day. Recently started neurontin 300 mg/ 3x daily, but like everything else, there has been little relief. considering surgery, need advice, also it has become so debilitating that I am considering leaving a job I love because I cannot cope with both right now. Is neurontin working for anyone and at what dose ? Alone or in conjunction with other meds? How long until you got relief with the meds? Would appreciate any and all information, suggestions anyone has. This has been a horrendous ordeal for me, and for my wonderful family! Name: Robin My mother is 78 years old. This affliction has been with her for at least 9 years. It is the most horrible thing I have ever had to deal with. The pain has took away these last years of her life. She is a shell of the woman she once was. As the years have gone by, she has aged so quickly. I have been so ...angry..this has stole my mother away from us, but she is still here. My poor Dad. He is the one who lives with her and has to deal with this. They are virtual hermits. He, at least, has to do all of the errands. That gets him out. But, she lives in such fear of the pain, she cannot lead any kind of a normal life when she is absent of pain. It is like her whole mind revolves around when the next pain is going to come. She sees a physicatrist, but, I really see no improvement. It is the saddest thing. My mother is a very healthy woman, with the exception of this anchor around her neck. It has been hell, and frankly, I am so dissapointed with the treatment that has been given to her. After reading all of this though...is there really anything that will help. I see nothing can erase this horrible condition. My dad is bringing her to the hospital tomorrow. He says that someone better damn site do something. He is heartbroken that this is happening to his wife. I just cry when I see her. She is a bundle of nerves and a bag of bones. It is very frustrating. If anyone can tell me of anything that can give us some hope, I would be forever grateful, and my mom ...oh my God, I do not know if her mind will ever recover. It is like she has post traumatic stress disorder. When she is in no pain...she almost waits for it to come. She talks so softly, in fear that the mere moving of her mouth may bring on that horrible pain. This is a full blooded Italian woman with five children who was never soft spoken! Now, you have to strain your ears to hear her. She cannot enjoy the time she has here on this earth. My mother may live to be 100! We have great longevity in our family. But, of what quality will that life be...living in constant fear of pain, or, the actuality of this most excrutiating pain. Thanks. Look forward to hearing from anyone with any ideas or answers... Name: Karen Five years ago this month the left side of my nose began having terrible pain, especially in the mornings when I woke up. I did not injury myself in the face and don't know what caused to appear. My family doctor gave me all of the decongestants, allergy meds, etc., thinking it was sinus pain, but nothing worked. The symptons are closely related to migraines, which I have had for years before this pain began. The only thing that will stop this pain is Imitrex injections, which I give myself. It knocks the pain out in about 30 minutes and I can go on with my life. In 2002 I went to several ENT doctors and finally ended up having septoplasty surgery, which within 2 months the pain was back. So I continued looking for relief. I had acupuncture for 6 weeks, and that didn't help. I went to an allergist and that didn't help. I continued going to my ENT and she gave me antibiotic creams, Celebrex, cortisone injection in the nose....you name it we have tried it. Also, my Neurologist tried Neuronitn, Topomax, Nortriptylene(sp), with no success. She continued giving me Imitrex, which is a God send to me, but I can't take it every day, only when the pain hits me. In January of this year, my ENT did nasal reconstruction on me, in which he took cartilage from one area of my nose and placed it in the area of the pain. This has helped some, but I still have the pain frequently, especially in the mornings, and more so when I sleep late. My eyes also hurt during all this, so my entire face feels like it is going to come off. I never know what I'm going to wake up with in the morning, especially on weekends when I sleep later. I really don't know what to call the pain I have, but just wonder if others have experienced pain in one side of the nose, which isn't sinus related. Name: Kelly I had my first experience of the pain when I was in seventh grade, almost 12 years ago. I kept experiencing this intense pain in my nose for only about 10 seconds at a time. When I explained this pain to my parents, they were certain that it was all in my head. Finally, I begged my parents to take me to a doctor. I went to several doctors who had several different diagnoses, each which proved to be incorrect. I had been prescribed several different medications to see if they would possibly help. Finally, I was referred to a neurologist after about 2 years of experimenting with different meds. Immediately, the doctor diagnosed my condition as trigeminal neuralgia. Since then, I have found success with several medications, but my body hasn't reacted well to the side-effects. I was on Tegretal for years, and my doctor decided to try Trileptal, since it doesn't effect your liver like Tegretal. I had extremely bad side-effects from the Trileptal. I would become horribly dizzy and would have double and blurred vision for about an hour after taking a dose. I couldn't decrease my dosage, so my doctor decided to try Nortriptilene. I had good results with this medication. The only problem for me is that I would have break-through pain no matter what medication I was on...so no complete relief for me. I am currently 23 years old, and I have actually been off of my medicine for about 3 months, because my husband and I are trying to get pregnant. With all medications, there has not been enough research done for me to feel the slightest bit confident about taking them during a pregnancy. I truly didn't know what to expect, since I'd been on medication for almost 10 years. The past month has been extremely difficult for me. I have so many pains per day that it is unreal...I would have to say that I have over 50 pains per day. The intensity of the pain has increased more each week, and I wonder if I'll be able to manage without medication for much longer. Everything affects my pains...the wind, stong smells, a touch on the face, etc. I have seriously been thinking more about surgery options, but unfortunately, I haven't done much research. If anyone would like to talk about their experiences, or if you are going through something similar, please email me. I would love to talk to anyone who is dealing with the pain and has any suggestions for non-medince approaches also. Thanks! Name: Heidi Hi. I was not diagnosed with TN but know this is what I have suffered with. I have had horrible teeth and after suffering major minears disease which runs in my rotten toothed family, I went downhill for 4 years. I was self medicating with nyquil, motrin, aspirin, aspercream. I can't take any of these but Tylenol now. My stomach is thrashed. I have been in such pain I can't move but just curl in a ball. crying is excruciating. They had me on drugs, antibiotics, and sinus meds that made it worse. I'm not wet, I'm dry as a bone. I feel empty and in pain, raw and swollen. I found out that eating any heavy foods exacerbate the problem. they block up my blood flow. I avoid fats like a plague. I can go headache free a long time if I take niacin 25mg. along with vitamin e, and exedrin migraine, aspercream all over my face, neck and around my eyes, pull on my hair and try not to think.. Have a major head massage even if I have to do it myself helps. Finding my pressure points that make me nauseous and rubbing them hard. Taking lactoferrin, and molecula silver. I do the exedrin/niacin/e thing 1-2times daily and it prevents a headache from starting. Never eat until you're full. Try not to snack on sugars all day. Avoid fats except omega 3.6.9. Take a lot of these and pour them in your food. Eating fatty foods for me always causes a major setback that takes days to get over. I'm finding recently my PH is off like a dirty fish tank. I know this is why my son has so many health problems. We both test horrible on our PH and our teeth are both falling out of our heads. I am 28 with a denture. There are minerals that help flush your body and help your PH. They help your body want to flush all the minerals in your body that you cannot flush due to them being in too big of a particle and building up. Your body really wished it can use these minerals but it can't so they sit there and do more harm than good. The good minerals are called mini minerals. I highly recommend trying all healthy alternatives and doing lots of searching. The infection needs to be cleared from the inside out. Not have bandaids put all over it. Well, good luck to you all. If you really research you will find the truth. It's out there but I can't tell you, you need to find it to believe it. remember one thing, every drug suppresses. None of them cure. They all have a disease attached to the pamphlet. The cure you have to find on your own. ~Heidi Name: "Big Mouth" the meds do help me..neither surgery was successful as the pain returned in few months. I have lived with TN for 25 yrs. No one knew what it was & really did not try to help the first 6 mos. The Drs. had my family believing it was 'all in my head' for years. I prefer the week or two of severe pain then months of remission to the daily electric jabs several times a day for months or years before remission. That 'never knowing' when seems to be much harder to bear! I was run out of more Drs. offices than I can count. Will be happy to answer any questions or corrospond with amy fellow sufferers. Name: Nicki It all started last summer when I had this "itch" on the back of my neck. It progressed into severe pain on the left side of my face and down my shoulder. I went to my family practitioner and he suggested that I might have shingles. There is no real test to verify you have an active case of shingles. All they can test for is to determine if you had chicken pox sometime in your life. Anyway, they treated me for shingles and I never broke out, but the pain did not subside. I had 2 MRIs: one for the neck to make sure that I did not have a problem with the discs in the spine, and one for the brain to make certain I was not showing any signs of MS (have brother & first cousin with MS). Those (thankfully!) came back negative. I finally went to a neurologist, per the recommendation of my doctor, and he did some nerve response tests to make sure that I was not losing nerve conductivity and muscle response on the left side of my extremeties and neck. That was pretty painful. When all other things were ruled out, then the neurologist stated that I have Atypical Facial Pain and had me start on a regimen of Neurontin. It took about 3 months after diagnosis for the stuff to settle down. I had been experiencing minimal discomfort for about 3 months and then it just flared up big time! I had been able to stop taking the Neurontin, but I have returned to it. It does not work the greatest, and I cannot take other neurological medications since I am also on Trileptal and Geodon for other reasons. Cold packs seem to help when it gets really bad (helps deaden the nerves a little bit). Just wanted to share my limited experience (about 9 months thus far). I have not idea what people are going through whom have the worse form called TN. I guess I should consider myself fortunate. Thanks for reading! Name: Lori I had been having facial pain for about 4 years before my official diagnosis. The pain was infrequent and would disappear for months at a time. Because of that I did not seek medical advice. As a young girl I remember the dentist telling me I had "soft teeth" and that accounted for all of the dental work I needed to have done by the time I was a teenager. By the time I reached adulthood I had had numerous dental procedures including, but not limited to, root canals and extractions. I visited my dentist after the pain started getting much worse and coming more frequently. He prescribed a bite splint to be worn at night because he felt the pain was caused from grinding my teeth at night. When that didn't help he referred me to an orthodontist. The orthodontist felt I needed a root canal even though that tooth had previously had a root canal. He explained that sometimes bacteria get in to the tooth and cause the need for a second root canal. When that didn't work he felt the tooth in front of that tooth might be causing the problem. After a second root canal I took matters into my own hands and sought treatment from my family Physician. During that time, I remember looking up facial pain on the internet and coming across this very web site. My symptoms were exactly what I was reading about but I denied it thinking ...it is so rare...how can that be me…I'm too young (36 years old). How naive. My family Doctor thought she knew the diagnosis and referred me to a neurologist. She didn't prescribe any pain medication and when I asked she told me to take Motrin. WHAT A LAUGH! After 5 months of waiting for an appointment my neurologist did an exam and quickly diagnosed me with trigeminal neuralgia. I was shocked, stunned and thankful that I finally had some answers. Since then I've been on Neurontin, Tegretol, and Elavil. The tegretol seems to be the only medication that helps (I take 200 mg three times a day) but I am so TIRED all of the time that I can barely function. I fall asleep at my desk during the week and my weekends are more often than not spent sleeping or laying around. Taking less medication is worse because I can’t live with the pain. I can't stand my life like this. That's what brought me back to the TN web site tonight. I'm looking for a medication that wont make me so tired. I'm also wondering if it's time to think about surgery?
Name: lisa dec 3003 i had a terrible earache went to e.r. they told me it was sinuses, went to family doctor same thing, went to dentist he gave me antibiotic and told me to go to specialist that maybe i needed root canal. then in feb 2004 it happen again back to the same doctors again sinuses went to a e.n.t that said nothing was wrong with my sinuses sent me to oral specialist. i have m.s. so i decided to call neurologist that told me that i have trigeminal neuralgia that he suspected all along but he wanted to rule everything out first. now i live with this pain and it hurts so bad i have 2 small children, am going through a divorce it is real hard Name: Anonymous I have had trigeminal neuralgia since about 1992. After some difficulty in reaching a diagnosis, I was put on a combination of carbamazepine and amitriptyline which proved very effective at controlling the pain. Unfortunately, the effectiveness of these drugs gradually decreased and after a few years I was reaching the upper limit of what was considered safe to prescribe. I had done some research and discovered that stereotactic radiosurgery (the 'gamma knife') was a possible treatment and very much safer than microvascular decompression. I received the treatment at the Royal Hallamshire Hospital in Sheffield in September 2000 and within a month I could feel that it was working. I decreased the drugs gradually and by November I was drug free and pain free. This happy state of affairs lasted nearly two years after which the pain began to come back. I started taking carbamazepine again with amitriptyline added after a time. At first it seemed as if the dosages I needed to take were going to rise back to previous levels. But they seem to have stabilized now at levels that are *very* much lower than before I received the gamma knife treatment. On balance, I feel that the gamma knife treatment has been very successful for me. I understand that it works best for people with 'typical' trigeminal neuralgia and I seem to fit into that category. Name: Sheshe My problem started a number of years ago, always close to change from Winter to Spring. I would get what I thought was a migraine headache behind one or both eyes and in my head. Around the same time give or take a few weeks, I would also experience extreme tiredness that would last maybe 4-6 weeks. (A friend later told me that the tiredness was a "False Neuralgia". It is now the end of February and last week I had that familiar migraine behind my right eye. The next day whilst still having the migraine I noticed the upper right side of my gums were infected with little bumps that looked red with puss pockets. There was also an awful odor with it. The next day with still the same symptoms I had a very swollen gland on the right side of my neck. I started taking left over Penicillin and after 2 days the tenderness & infection in my gum & gland started to go away. 2 days later I awoke with the gum infection on the upper left side of my mouth and there was a terrible pain in my face, around the left cheekbone, eye and left part of my forehead. It was a dull deep throbbing pain that made me feel ill, but I didn't know what could be causing this pain in my face. Even stroking my finger across the skin would hurt. The next day the infection in the gum was gone and I had very little tenderness on my skin but was left with a dull headache all day. Is this still a change of Season thing? If so, what is it? Does anyone know? My parents, when they heard of the inflamed gums and pain in the face suggested Neuralgia but I have been reading other peoples stories and don't have anything resembling their symptoms. Name: margaret MY 83 YEAR OLD AUNT HAS BEEN SUFFERING TERRIBLY WITH TN FOR SOME 5 Y5S NOW AND FINALLY SHE AGREED TO HAVE A MINOR SURGICAL PROCEDURE DONE CALLED GANGLIOLISIS DONE BY A SURGEON IN THE HOSPITAL JUST HAD TO STAY OVERNITE SINCE SHE HAD GENERAL ANESTHESIA. PRIOR TO THIS SURGERY SHE WAS UNABLE TO EAT SOLID FOODS, TALK OR BRUSH HER TEETH FOR MONTHS AT A TIME WHILE IT WAS ACTING UP. NOW THAT SHE HAS HAD THIS MIRACULOUS SURGERY SHE CAN TALK AGAIN FREE FROM PAIN. IT TRULY WAS A MIRACLE-PLEASE LOOK INTO THIS PROCEDURE IF YOU SUFFER FROM TN! IT WORKED FOR HER! THE PROCEDURE IS QUITE SIMPLE-DONE BY A LASAR THE GANGLION NERVES IN THE JAW AREA ARE CRUSHED , NO SCAR, NO CUTS JUST LASAR SURGERY. SHE DOES HAVE SOME NUMBNESS IN HER FACE BUT WHO CARES SHE SAYS-SHE HAS NO PAIN! Name: Thomas About 3 years ago, I started to have facial pain that was intermittent. Its difficult to the describe them but it was like having a million fingers pinching on my face. At their most severe, they were usually accompanied by bumps that began around the cheek areas below the eyes and near the nose and would then appear on the forehead, neck, and all over the face. Usually I would take some allergy med like Benadryl and it kind of helped. Well it became progressively more common, from once a month to once a week and then daily. Now I have it constantly but some days are worst than others. They feel like invisible scratches on my face and they are sore and tight and sensitive. When I'm emotionally stressed like sad or angry, it feels like the facial pain is worse. I don't know if its related but my scalp is tight and itchy. I feel little bumps on them. I went to two neurologists and they did not have an answer. I went to an allergist and she tested me for allergies, found that I had some and began treating me for those. They may or may not be related to the pain. I'm not sure I believe there is a link. I've also been to an TMJ specialist who believes that the pain is related to TMJ. I've been getting treatment for both in the last few months. My condition hasn't improved. I'm desperate to find a cure because its so unbearable at times. I'm currently juggling school, and work, and my aging parents' health issues (they have trouble communicating in English so I often accompany them on doctors visits) and my own health issues as well as trying to sustain personal relationships with potential mates. Its been very difficult. I just wish that I could get some relief from the pain. Name: KIM ELLIOTT I suffered with bilateral tn for ten years. I'm am now 36. I was diagnosed with tn when I was 24. When I was 26 I underwent my first mvd, which was a total success. Three years later, I had tn on the left side of my face. This time, it was 100 times worse. We decided to do another mvd since we had great success with the first one. Unfortunately, I had different insurance so I had a differend neurosurgeon. This surgery didn't go as well. They couldn't find the blood vessell so he said he "nicked the nerve" which then led to another problem. The electric shock sensations were gone, but now I suffer with cronic pain. This now turned into Atypical face pain. And like most of you, I have been on all of the meds. I was even put on oxycontin, then the duragesic patch. It was more than I could handle. This last October, 2003, I finally found a Dr. that know's what he is doing. We first tried to do nerve blocks, but it didn't work. I just underwent a surgery 2 weeks ago and he implanted a neurostimulator to stimulate the trigeminal nerve. I have at least 50% relief of pain right now when I use the stimulator. It sounds weird, I wasn't to sure of it either, but it is working. The only pain med I take is Topamax, 100mg a day. I'm off everything else and slowly recovering. This Dr. is the best thing that ever happened to me. He is a Dr. that truely cares about his patients. Some I think are only in it for themselves. He isn't. He works at the University of Colorado Hospital. I don't know where I'd be without him. He truely was my last hope. I hope others can get relief from their pain. I know too well how depressing this disease can be. Please email me if I can help. Name: Donna My husband has had pain that has progressively gotten worse. His MD. believes he has Tic Douloureux, but has referred him to a neurologist. Unfortunetly we are still waiting for an appointment.The pain he has will vary, sometimes on left side of head and then on the right. Right now it is lingering on the right side of his neck. He describes the pain like " someone taking a pair of pliers and grabbing his skin". The pain is so bad it makes him wince. He has been prescribed Neurontin, which doctor says will take up to 4 weeks to work. They say the pain people experience from this is the most painful known to man, I sympathize with all those who are going through this and welcome any reassurance on this disorder that I can get.Does it get better? Name: "Angela in Texas" I have just found this web site and am very relieved and excited to know I am not alone. I have TN. It began with the birth of my first child 7 years ago; after the birth my body went haywire hormonally and a had SEVERE lesion like acne which had to be treated by antibiotics. The sores entered my left ear and caused a great amount of discomfort. After the sores left, I began having spasmodic series of pain on the left side of the face that were electrifying and almost paralyzing. After several incidents, I went to a neurologist who put me on Tegretol. I then went into a dark depression, had just given birth a second time after 6 weeks of bed rest, and couldn't understand why I was still have episodes of pain. After talking to my mom I discovered that antidepressant drugs had a family history of causing severe depression and sometimes temporary madness. My neurologist never answered my phone calls to give me advice on how to get off the Tegretol; so after 8 weeks of waiting, I talked to a pharmacist and gradually took myself off the Tegretol. My sanity returned quickly; the paid episodes are the same. They only occur about once or twice a month, and I take Vicodin to get me through. Interestingly enough, my episodes usually occur when my SINUSES ARE INFLAMMED. So I have found that keeping myself on an allergy product to keep me dried up helps. It's good to know there are others who are fighting this too. Thanks! Name: anna dal 1996 ho iniziato con forti dolori auricolari bilaterali bilaterali con prevalenza del lato dx che si irradiavano lungo l'arcata orbitale, mascellare , estendendosi all'interno della gola e alla lingua, e perfino al naso, i denti erano interessati fino al premolare da dolore intenso e senso di addormentamento una perdita notevole di udito circa l'80% ad entrambe le orecchie, i dolori auricolari che si presentavano con forte calore e prurito. 1° ricovero in ospedale per valutare questa perdita di udito e il dolore esco con una diagniosi di nevralgia del V° bilaterale e una cura a base di Dobetin 5000 intramuscolo e Rovingon A+E. 1997-I dolori continuano sempre intensi , incessanti continui 24 ore su 24,da non permettere di dormire -consulto nuovo Neurologo ospedaliero cura Laroxyl(Amiptrillina) 40/60 gocce + Indoxen.Continua il dolore e il senso di addormentamento e insensibilità facciale sempre accompagnata da continuo dolore senza interruzione,faccio controllare i denti perchè il dolore era ancora più intenso su un molare e infine trovano una osteite del 1°molare DX superiore vengo operata per la sua rimozione in ospedale con apicectomia per salvare il dente che era tra l'altro già incapsulato. Il dolore è sempre presente e sempre + pressante decido per la rimozione totale del molare ma a distanza di tempo il dolore continua con la stessa intensità e localizzazione come se il dente fosse sempre li. 1988 Consulto l'otorino di un'altro ospedale che intende valutare la perdita di udito e cura questo con cortisone (bentelan 4 intramuscolo per 1 die) + (synacten depo 5 intramuscolo) + indoxen e aulin all'occorrenza. La perdita di tipo neurosensoriale dell'udito che fluttuava si stabilizza e l'orecchio destra recupera l'udito nonostante che l'edema all'interno sia ancora presente con membrana timpanica retratta e opacata,ma il dolore cosa importante e sempre li intenso e continuo.Consulto altri medici mi affido all'agopuntura all'omeopatia, niente.1999 consulto un Prof. di immunologia visto che comunque le analisi del sangue risultano sempre alterate con un aumento di VES anticorpi anti- nucleo anti-DNA anti-muscololiscio e quant'altro. Cura: per il dolore Tegretol 200 x 2 die (finalmente un pò di sollievo anche se il dolore persiste se ne abbassa l'intensità) + TRICORTIN 1000 + SAMYR 200 + Aulin + Broncomunal + Spray Nasali Nasonex Biorinil. La cura continua con Tegretol 200 + TAVOR + zirtec+ fluifort+ ecc... Insomma il dolore si abbassa un pò da permettermi di vivere visto che il freddo e il vento gli sbalzi di temperatura e l'aria condizionata non mi permettevano neanchè di affacciarmi alla finestra, il dolore è sempre continio ed incessante se in una scala da 1 a 10 ora è 7/9. Continuo a prendere tegretol ma il dolore è sempre presente faccio nuove ricere TAC RISONANZEW MAGNETICHE che evidenziano piccoli punti ischeni e aree iperintense in sede frontale. Analisi sempre alterate VES ecc...-2000-Nuovo ricovero e nuova cura con Sereupin, Fluxarten, Neurontin,Gabapentin niente il dolore è sempre presente . Valuto di Nuovo i denti con esami ecc. valuto la sindrome di Costen BYTE ecc... Continuo infine con Tegretol e antiinfiammatori insomma un vero caos a tutt'oggi con forti dolori e rari periodi di remissione del dolore che se sparisce per un pò lascia fastidio parestesia , insomma che fare? Name: Andrea Glover I have had Trigeminal neuralgia for 2 years. I like others thought it was dental and had four wisdom teeth out and the pain immediately worsenned. I sought for help from a naturopath with no relief but an osteopath told me my neck was out and causing pressure on the nerve so he manipulated my neck and the pain went away for a full year. I was shocked when it returned, the pain was horrendous not being able to eat, sleep, talk, smile, kiss, and function basically. My pain episodes would send me screaming and last for an hour sometimes. Desperation set to pain relief. As you know opioids don't work on nerves very well so I tried Tegretol. I am a Registered nurse so I knew how dangerous Tegretol can be. It did help alot although I only wanted to take the minimum dose and had 200mg TDS, but I developed toxicity and had to stop it. I am considering surgery because I hate drugs and would like children I am 25. I hope some people get relief from surgery, I want to be hopeful. All these these stories about failed treatments and pain are worrying me. Name: "Sue" I started with severe pain in my face in the early nineties and it has grown worse through the years. I also have it in the left side of my face, jaw,teeth,head and continued weakness and pain down the entire left side of my body and extremities. I had my permanent teeth removed in the upper left due to swelling and severe pain of the face. My tongue swells and my throat becomes tight. I suffer so much that I can't sleep and often feel so alone and depressed due to the severity of the pain. I want to work so much and it continues to keep me from my nursing career. I have faith in God so this is how I survive. Its very hard to endure such horrible pain and I feel so helpless at times. I have also tried nerve blocks with no success. I suffer with my left ear and at times cannot really tell where the pain is because it is so horrible. I have diabetes but was told that this pain is not a result of the diabetes. I have been checked for ms over and over and no one is complete in their diagnosis. I pray for all of you that suffer such agonizing pain. Sue Name: Melissa My father who has never been sick a day in his life was diagnosed about 2 years ago with TN. It is so frustrating not being able to help him and to understand the sudden pain. He has been on so many meds that seem to help for awhile but it always comes back. He recently had the gamma knife but again the pain returns. Name: Jerrold I became involved with TN in October 2002. Had the electrical shocks on the left side of face. Slightest touch caused severe pain. At the time I thought I had a sinus infection (also had some upper teeth removed 5 months earlier) After three days of intermittent pain I visited a doctor, requested an MRI to rule out tumors, etc. was denied and given antibiotics and a prescription for neurotin. Took the antibiotics and just before getting the neurotin, "The pain just disappeared" as quickly as it came, it was gone. I was a very happy camper... Until!!!! January 9th 2004. (14 months later).. Its returned.... Same sharp electrical shocks to the left side of face. This time, they are more severe, more often, and it seems when I tense up, speak in public, or raise my voice, I suffer dearly.. I do seem to have a slight sinus swelling and have taken biaxin for 5 days to no avail, now I have started neurotin and have taken 600mg a day for three days (it has done nothing). I have made an appointment with the same doctor who treated me 14 months ago. Tomorrow I will again ask for an MRI and referral to a neurosurgeon. Hoping it will just disappear every second. This morning I had a nasty attack that lasted about 30 seconds, in the middle of a meeting, while speaking.. I stumbled for composure while the electrical shocks jolted away. My left eye was watering and the pain made me tense up causing more pain. I have now, until something is done, given up speaking to anyone, trying to keep cool and relaxed and just waiting for the next session. I now only eat soup, "warm" and very, very, slowly. Have lost 13 lbs in one week. This has been quite the episode. I can see my entire life "as I know it" going down the tubes really quick. I am, however very interested and challenged with this problem. Could be worse..... will see!!!! Name: corey I suffer 24hrs a day with a awful feeling above my right eye. it is a feeling of extreme tension,aches and is dull and numbing. i have continuous tics (like winking and constant right eyebrow raising) that i cannot control! it is embarrassing and humiliating. and i have these tics from the second i wake up to the second i fall asleep. i know i am doing it but can't stop. this condition is called supraorbital neuralgia/trigeminal neuralgia. and has destroyed my life in every way possible. mentally,physically and emotionally! i am so miserable and don't want to continue living like this. but if i want to live this is how i must do it and that is to much for me. i desperately seek help from anyone! i have had 2 endoscopic surgeries (decompression) nerve blocks,pills and even accupuncture and nothing has helped. i feel as if i am all alone and in my own personal hell! i can't even have a normal conversation with someone without my eye twitching or my right eyebrow raising and winking my eye. so i avoid talking to others and i desperately want to converse with others but shy away because of my "condition" even with my wife. i have been this way every second of every day for almost 8 years. can you imagine being in continuous agony for that long with out any kind of relief? its horrible and it has finally broke me. i just can't deal with this anymore. i beg any of you to help me anyway you can. thankyou so much for reading. and for you who try to help i thank you even more.......... one thing has helped with the tension but was very temporary (2weeks) and that was bo-tox injections. but it cost so much (around $300) i can't afford it and insurance won't cover bo-tox. Name: "Sissy" My story seems to follow the path of the majority dealing with this Disease.I have had all the normal course of meds. MVD surgery in Feb.2002,and as of Christmas morning i am back at square one.Today i do not even know what i feel,my family and friends are once again trying to be helpful and i thank them for that. But there is no way they can understand. To be honest i don't believe i do. Hoping a good day comes to everyone.
Name: daniel I do not know exactly what I have. I have read through all of the other stories and became very sympathetic regarding the pain. my problem started about three years ago. I was in an car accident, the day before i graduated from college, and began having severe headaches a few days later. The pain was isolated primarily to a spot on the left side of my head about one inch above where my hair begins. The doctor I saw said that I had post-concussion syndrome and that it would end in nine months to a year. she gave me celebrex and Lortab. sure enough, the pain ended about ten months later and I thought the nightmare was over. about a year and a half late, eight months later I had another attack, only this time it was worse, far worse. I kept calling the attacks head aches, for lack of a better word but all the literature i read about migraine and cluster headaches seemed inaccurate. the attacks completely incapacitate me. I cannot even stand up, i slur my words, and crave any meds that will just take the pain away. The type of pain I have seems very similar to others I have read here. I get 20-30 second bursts of electric shock like blasts into my head. I have had an extremely difficult time with doctors. i am 24 years old and, i believe as a result, am considered and treated like a drug addict by many doctors. does anyone share any of the same symptoms i have?? does anyone have any suggestions?? please write! Name: Patty I was finally diagnosed with TN on my right side in the early 80's. I was misdiagnosed for years because I was only in my 30's. I found a neurologist/neursurgeon who knew exactly what it was. We tried many different types of meds that were unsuccessful. The doctor than performed the first surgery that worked successfully. I was pain free for four years. Unfortunately the pain returned exactly four years later. The doctor had retired. I found a new neurologist/neurosurgeon. I again tried meds unsuccessfully. We then tried the rhizotomy procedure. All it did was intensify the pain ten fold. The doctor then did the microvascular compression again and ended up cutting 2/3rds of the nerve. This too worked again for a little over four years. My face just felt like I had been to the dentist with a few shots of novocaine. I then started dilantin successfully. I was able to go months without the need of additional pain medication. Until about a year ago last October, the pain returned with a vengeance. We upped my medication with no success. We then switched to topamax. I had been researching the "Gamma Knife" procedure for a few months. I was told with all my previous procedures that I had done, the chances of success were slim it might be work. It was worth the chance to me. That was a year ago last month. Unfortunately, it did not work. But I would have always wondered? Right? I am now taking my topamax,pain meds and just making it through the days. Some days are definitely better than others aren't they? I try to explain my pain to my husband, family & friends but then it just comes out sounding like I feel sorry for myself so I just shut up. When they ask how can they support me, I'm not really sure what to say? Except maybe find a cure, but I don't want to sound ungrateful. I too thank you all for letting me vent. If anyone wants to email someone who understands please feel free. Name: OneMindOneSpirit Went to the dentist, had upper teeth pulled, 3 left and 2 post. Last molar on right bottom pulled also. By the 3rd week, just as I was using a tooth whitening kit, I had sudden intense electic shocks across my bottom jaw line and all of the lower teeth was in pain. Now, going on 9 months since the teeth were pulled I am numb on forhead, across both eyes, both cheeks, nose bridge and deep in the nose and then down the right side of mouth, upper gumline and upper lip also. Plus, the OS cut that skin flap under the upper lip. I feel like my face is stiff, I feel like deadwood. Now what? Name: sue Hi my name is sue i have suffered from TN for the past 8 years. it started after a case of shingles, that affected the right side of my face over my eye to the bottom of my jaw. i have tried all sorts of drugs none of which have helped. (ocycontin,largactil,tryptonil,tegtetol,neurontin,dialantin,to name a few.) at one point i was on 11 x200g tegretol a day. these days were spent on the floor on a mattress ,as i couldn't walk or see and barely speak a real zombie. i then went and had the glycerol injection in my face ,but that didn't work. then i tried my first MVD, my surgeon told me that there was a nerve twisted around a blood vessel in my brain, he then packed it with Teflon. this worked for about 4months then the pain came back. i have forgotten to tell you i was a happily married woman with 2 wonderful son and a beautiful grandson. at this point in my life when the first MVD did not work my marriage began to fall apart, this left me with feelings of failure,depression,anxiety,anger everything ,to be my marriage falling apart was all my fault because i could not beat this illness i was not tough enough. I felt i had let everyone down, including myself. when i finally climbed out of the dark hole of depression, I made the decision to have the second MVD. this was going to be my new start in life. my hopes were high that this second MVD would solve everything and give me my normal life back. full time work ,a social life watching my grandson grow up everything i dreamed of. my second MVD was performed 7 months after my first and i had great relief from this debilating disease for about four months. now i am back to square one, every second day i have pethedine injections and eating endone like lollies this then allows any free time i have with my head in the toilet.i have started seeing a naturopath and an acupuncturist. this is giving me some relief but still have and live with constant pain. i have now got to the point of wondering if iam the only person in the world with this and if i will ever get past it and have a life back. please if anyone wants to talk feel free to email me at the above address. a problem shared is a problem halved.
Name: elaine a year and a half after surgery, the radiated skin appeared on the face, neck, chest, back. it is the reason for the burning pain. so much medicine to accomplish so little but render one "stupid" or "dazed". So unnecessary, when only the radiated markings need to be erased. willthat someone come foward and help? thank you 1,000 times for your assistance. no one should suffer in pain.certainly not this. |
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