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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 | |||||||||||||||||||||||||||||||||||
