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January 07, 2004 - Toni Hello, my name is Toni. My 14 year old daughter, Saraya has just been diagnosed w/TN. I feel very helpless and sad for what she is going through. She is currently on Tegratol to see if we can relieve any pain. She's been through x-rays, CT scans, MRIs, hospitaliztion, morphin by iv. It has all been very frustrating. Any comments or encouraging words for her would be helpful.
January 05, 2004 - Jan I am reading all of your comments with great interest. I suffer from something similiar, but different. I started with severe left side facial pain that would start in the temple and progress in throbbing waves into the eye socket, then the ear canal, the upper jaw and teeth. Then it would fade and start over from the temple to the eye, ear and into the jaw. Over and over again for 30-40 minutes, then disappear! This is the worst pain I have ever experienced! Ice pick is a good description. Some years ago, the neurologist diagnosed my situation as chronic paroxysmal hemicrania: a cluster type headache condition. This seems to follow the trigeminal nerve as it is not a vascular type condition. I have experienced some relief with INDOCIN or INDOMETHACIN taken every day in extended release pills. Who knows? It may be worth a try for some of you, too?
December 29, 2003 - Chris Diagnosed with TN aged 31. Now 46. Had decompression of the nerve done 5 years ago. Not successful. My sister aged 54 started with pains in October 2003. Diagnosed as TN. This is the most excruciating pain in the world! Fellow sufferers, the following brings immediate relieve for me. When pain becomes severe and in prolonged bursts I go to the dentist who injects me with normal local anasthetic into the upper jaw around the area where my pain is centred. The pain disappears in a soft warm glow of anasthesia and by the time the anasthetic wears off the cycle is broken and the pain becomes less frequent and stays away for longer periods. Wishing my fellow sufferers a pain-free and peaceful new year from sunny South Africa.
December 25, 2003 - Cheralin Hello Fellow Sufferers, Mine started twenty years ago after the removal of my wisdom teeth. The upper left site never stopped hurting. I took tons of asprin while running between my doctor, dentist and specialists. It took seven years to get a diagnosis! even though by then I knew what I had. Over the years the pain spread in area and increased in severity. The pain spread to all my upper teeth, then the lower teeth, and then, God help me, through the eye. In the last year it has spread to the area under my tongue. I tried a splint for TMJ, the medications, acupuncture, biofeedback, psychologoy, TENS, Gamma Knife, and a glycerol rhizotomy. More, I'm sure but my memory is terrible. Tegretol was a magic bullet but caused liver failure, I was nearly dead by the time the connection was made. The worst, absolutely worst was caused by the glycerol shots. The procedure is a nightmare, but I never woke up! I entered a world of pain that I could not have imagined. The surgeon would not see me, prescribe for me or even talk to me on the phone. To my everlasting shame I begged my sixteen year old daughter to get me a gun. That episode ended up in the emergency room and I was admitted for five days for pain control. That abated somewhat but still at a permanently worse severity. I don't know how I survived the years of rocking, moaning and crying. I missed so much of my children's lives, even graduations. Thank God I now have pain relief. I was lucky enough to find a dr. willing to work with me on this. He started me off on a small dose of methadone - 10 or 20 mg, and we increased and increased and increased until finding the dose that worked! That is 170 mg. daily, also 2400 mg, of neurontin, plus various other meds. Now I have morphine for breakthrough pain, but hate taking it. However, when the pain hits there is really no choice. I know a lot of people think narcotics won't work, so did I. And it didn't, not at the usual therapeutic dose. This was five years ago and gave me a life. It is a rather limited life, can't work, can't drive, can't sleep, but still I have learned to take what I can get. I can keep a house and have a limited social life, and I volunteer a few hours a week when I am able. There is a wonderful article in the December Reader's Digest about chronic pain. I urge you to get this issue; beg, borrow, or steal it if you must. They cite a wonderful website for the American Board of Pain Medicine. The address is: www.abpm.org They list certified pain specialists by state. I have gotten more help from my pain doc than I ever had with neurology. Although I did have a wonderful neurologist. He didn't believe in narcotics, but after years threw his hands up in the air and said there was nothing left but narcotics. Some people, even in my own family, think that I am a lazy leech on society and that I'm a hypochondriac and sissy. While I am sorry for all who are cursed with this affliction it helps to know that I am not alone.
December 02, 2003 - Juli I had five episodes of TN between 1982 and 1985, each lasting 4 to 6 months. The first time was the result of a 3 day "bug." Each episode after that occurred after dental work. I had seering pain on one side of my jaw (twice right, three times left) that ended abruptly at my chin. The sixth episode developed after I had my lower wisdom teeth removed. It lasted for almost three years. It felt as if I were holding red hot coals in my mouth 24/7. There was no relief to be had. I was offered Tegretol but chose not to take it. Out of desperation I sought the services of a nutritionist. I eliminated sugar, caffine, alcohol, cheese and mushrooms from my diet. Amazingly I was painfree in 10 days. Everytime I tried to cheat and eat any of the forbidden foods I immediately felt the pain in my jaw. I later learned that these foods stimulate the nervous system. It was such a relief to be free of that excruciating pain that I maintained the diet faithfully for two years. Little by little I began to introduce those foods back into my diet without problems. I have now been totally painfree for over 10 years and remain thankful for that fact.
December 01, 2003 - N Tripp I have had tingling crawling or flowing sensations of very hot or ice cold (sometimes can't tell which) over my eyebrow, around the bottom of the orbit of my eye, on my cheekbone and down my cheek. It happens many many times a day. BUT I have never had any real pain. It is more annoying than anything. Is this possibly TN or does anybody have any other ideas?.
November 22, 2003 - David David to Sandra re: Topamax (August 15, 2003 comment). I was on this medicine for a while and it seemed to lessen the pain. However, I seemed to get flu like symptoms. I may have been coming down with the flu anyways. A side affect of flu like symptoms are listed. It may be worh a try. I'm going to try again in the spring.
November 05, 2003 - Dallis I am 54. I too have been diagnosed with TM. In 1999 I went to my dentist with a burning, couldn't wash my face or brush my teeth symptoms. He was sure it was an old root canal gone bad. Recommended a implant. Two years and $4,000 later I still had pain. My primary care physician diagnosed it within minutes. I have been to a neuroligist and started with 100 mg. 3x day of carbamazepine and now taking 600 mg of carbatrol. Nothing seems to be working. Had an MRI and ruled out tumor. I am going to try accupunture. I will advise.
November 05, 2003 - Donna I have had the gamma knife treatment (ab. 5 years ago) which has taken away about 95% of my pain. I saw Dr. Carl Swan at the Methodist Hospital Gamma Knife center in San Antonio. This was a painless procedure. By the next morning, I was able to wash my face and brush my hair without triggering any pain. I just have slight pain ocassionally when eating and over 6 months the pain got less and less.
November 04, 2003 - Amanda If you are still checking in on this, I was diagnosed with TN in 1998 three weeks after the birth of my second son. However, my maternal grandmother had ALS. If you found any information linking the two, I would be very interested.
November 02, 2003 - Shirley I have had all of the problems, combined that all of the other people have listed and about 10 years ago Dr. John Tew of the University Of Cincinniti did the nerve burning procedure and removed the intense pain with some numbness. Ms Caitie Rose might want to contact him.
October 18, 2003 - Deborah I was just diagnosed with TGN. I suffered from migraines all my life and now this out of the blue. For four months I was in AGONY going to the dentist, the ear, nose and throat doctor, tubes down my throat, cat scans, MRI's, test after test, referrals, waiting for appointments, even going to the chiropractor (my first time). I missed my husband's birthday, his parent's anniversary, Thanksgiving, Christmas, New Years, our anniversary - writhing in bed in agony. Today, I've moved out of our bedroom because of the memories of the pain I suffered. Now I get out of bed, still in pain, bearable until a major attack. But I am exhusted, a side effect of Neurontin. I am afraid to leave my home even to grocery shop. What a hell of a way to live. I feel very lonely. It is a horrible disease. No one can understand the pain but us.
October 16, 2003 - Sheila I'm reading through these articles trying to find if TN is what I have. My neurologist has listed my symptoms as being those of TN but after reading these articles, I'm not sure. For almost 6 years now I have had an unbelievable "stabbing pain" in my left ear. It almost feels like someone is ripping the tendons out of my ear drum. It is a sporadic thing that has begun happening more frequently throughout the years until last year when I finally had to get help. I was in the ER at least once a month crying in pain. They would shoot me up with morphine, demeral and anything else they could find but it only slightly dulled the pain, it didn't get rid of it. If anything, it just made me tired enough to possible sleep through it. My neurologist has put me on Neurontin and with the 1200mg a day that I take, it has mostly kept it at bay. However, the doses keep needing to be upgraded every 6 months or so and I don't want to end up on drugs my whole life. I do not have dizziness (well, not too often), and only occassionally (like at night) do I have a water-whooshing sound in my ears. Anyone else have something similar to this? All the doctors seem to be confused when I tell them about this and I'm starting to feel like a hypochondriac.
October 15, 2003 - Chris I have just stumbled across this page and it certainly makes me say thank god that I am not alone with this TG. I have been on neuront. and tegretol for some time now and I feel the same as many of you. The effects of the drugs are wearing off and I am wondering what my next step is going to be. I am lucky in one sense because I am totaly uneffected when lying down and in that I can take some consolation. I wish you all who have posted here the best of luck in whatever treatments you are on and hope like myself there will be a cure found for this curse of a disease. god bless you all from Ireland
September 15, 2003 - Tim Over the course of 15 years or so I have been experiencing a gradually more annoying pain in my right jaw area with occasional "Ice pick" bursts of pain, usually in my right ear or temple area. My jaw-area pain comes at night when I am lying on my right side. When I turn over onto my left side the pain is diminished. It has gotten to the point that I get up every morning with the majority of the right side of my head aching with the pain most concentrated in the TMJ area. Once I get up the pain will, for the most part, go away although there is now always a sense that the right side of my head doesn't feel the same as the left side. I mentioned this to my dentist years ago who suggested I see an oral surgeon who referred me to a dentist who specialized in TMJ problems. He took many x-rays and initially prescribed some hi-powered Motrin which had no effect at all. I didn't feel comfortable with this guy and just decided to live with the pain which, at the time, was just an annoyance. Several years later it was starting to significantly affect my sleep and the pain was becoming more pronounced. My doctor referred me to another TMJ specialist who I felt good with. Over the course of a year he took a ton of x-rays, performed numerous tests on my jaw including some kind of mild electrical shock, and fitted me with 3 different mouth pieces. Nothing helped. He suggested I see an ear specialist which I did. He prescribed a CT scan of my right ear which came back negative. The ear man suggested I see a neurologist which is where I am now. He is convinced I have TN. He prescribed an MRI of my brain & right jaw which came back negative. He then prescribed Neurontin, 300mg twice a day. This had no effect. He upped it to 300mg 4 times a day. I have been on this higher dosage for a week with no noticeable effect. At this point, my problem is nothing compared to what is being endured by other respondents to this site. It is helpful to see similarities in symptoms and medications which tells me that my neurologist perhaps knows what he is doing. My brother has had TN for many years and it has pretty much destroyed his life. He had to retire from his job due to effects of medication. He has unimaginable pain all the time, has tried every medication including oxycontin and fentynal, been to all the major pain clinics in the U.S., tried everything from accupuncture to a faith healer, all to no avail. Somehow he is able to put on a happy face.
September 02, 2003 - Barry I have only recently discovered the name for what I have been experiencing for several years now. I have been through seven neurologists, including Mayo Clinic specialists and no one caught on until recently. I can only hope that treatments such as millimeter waves and neurontin can help me and those like me. I have only recently begun neurontin treatment and for now it helps curb the frequency of the attacks. It is nearly impossible to make someone understand the debilitating effects of this on the lives of its victims. Driving to the store can become a life threatening episode when the attacks hit one after another. I pray for everyone who has the misfortune of dealing with TN.
September 02, 2003 - John I have had Trigiminal Neugralia now for 10 years. I am 73 years old and in very good health. Prior to my developing this terrible disease I had numerous root canal procedures and many fillings. I have been on 200mg of Tegretol twice a day and it is helping me. I still have a lot of gum and cheek troubles on the right side of my face at times. I had two surgeries and one alcohol injection that gave me only temporary relief. One operation was in the back of my mouth and the other near the front which has deadened a spot about the size of a silver dollar on my lower lip. One thing I have noticed is that when I get all stressful I can feel the problem coming on. I now take a valium and go get in bed and force myself to relax and ask God to help me thru this attack. By doing this and staying calm I can most times control the outcome. Stress is very bad for our disease. Today I came across this webpage for the first time and read all the letters on this site. For all of you that have this terrible disease I will pray for your finding a way to deal with your situation.
August 15, 2003 - Sandra I was just diagnosed with TN 1 week ago. I get a sharp pain to my left temple about twice a day that last for about 30 seconds. Recently I've been experiencing an awful ache in my left ear. I had an MRI done, which came back negative and the neurologist recommended 25mg Topomax or surgery. I haven't made a decison yet, so I've just been living with the pain. Is anyone else using Topomax? If, so have you experienced any harsh side effects?
August 05, 2003 - Paula Hello my fellow survivors! I have had multiple dental procedures and surgeries throughout my life. Two sets of braces, jaw surgery and more root canals than I can count just to name a few. I have had three teeth pulled in the last two years hoping to relieve the pain on my right side. This year I was diagnosed with trigeminal neuralgia. I have had back surgery and two natural child births and neither have compared to the pain I have felt with TN. I was often brought to tears from the pain and spent many sleepless nights wishing for it all to end. At times, yes, I too wanted die, just for it to be over. I have found relief in medication. I am currently on 1800 mg of Neurontin, 300 mg of Tegretol and 200 mg of Tramadal daily. The pain is manageable. I have infrequent break through pain, but it only lasts seconds and on even fewer occasions it’s lasted minutes. I am now considering the rhyzotomy procedure as the side effects of the medication are disabling. I have a few good hours each day. Those are the times between doses of meds. The morning dose starts to wear off about 1:00 and at that time I take the next dose. It kicks in around 4:00 and lasts until about 8:00 and at that time I take the next dose. I am totally sedated and have a drunken feeling. I’m wobbly on my feet, can’t hold a thought, can’t remember words, eyes don’t focus well. It is the worst feeling for me, I feel as though I am not in control of my own body. I have always been a strong independent woman. I worked hard and took great care of my family. Now I am living with another family and with their help I am able to survive. I hate the sense of helplessness I feel. The sense of hopelessness. I have never been this sad, this scared. I have two children to care for and although they are older, one teen and one pre-teen, I feel as though this disease is cheating them. Guilt. But it is this or the pain. What a choice. I am hopeful that the surgery will help. But have put it off for fear of it not working. I have read all of the different message boards and try not to be discouraged. This is a horrible affliction and I too would love to see a cure found. Have any of you experienced ptosis, lowering of the upper eye lid. It is also on the right side. It is a malfunction of the third cranial nerve. I also have a loosening of the muscles of my mouth on the right side. When I smile you can now see the back teeth. All very odd. Doctors have not been much help. I would appreciate any answers you may have.
July 16, 2003 - Deb I am a 44 year old female. I started suffering from head and face pain a year ago after gum surgery. I have since had two MRIs and a lumbar pucture. They first thought this was MS but now are uncertain. I have been on tegrotol and maxalt, zomig, neurontin and now carbatrol 300mg twice a day with no relief yet. I have a burning sensation in my head as well as numbness at the corner of my mouth. The pain is so bad sometimes I think I am dying. I also have tingling in my shins and behind my nose. Please if anyone else has these symptoms please write me. Thank you Debbie
July 08, 2003 - Mary Ann Hello. I was diagnosed with TN about four months ago, have had an MRI which showed nothing unusual. I'm taking neurontin @ 1800 mg. per day. The pain is tolerable, but I have side effects which affect my life--unsteadiness on my feet, sleepiness and foggy-mindedness. It's the best trade-off I've experienced so far. My sister had ALS (Lou Gehrig's) which is also a neurological disease. Has any one had a close relative with ALS? Both of these diseases are comparatively rare. I'd also like to correspond with some one who lives in northern Illinois.
June 28, 2003 - Tracy I have had trigeminal neuralgia for a year now, but it was only diagnosed about 9 months ago. Mine also started the day after a root canal, at the age of 29. Neurontin worked for awhile and they continued to up my dosage. Now it doesn't phase it at all. Then I tried Trileptal, which helped somewhat, but the side effects are too much for it not to be completely contolling the pain. I had a nerve block done Thursday, which hasn't helped a lot yet either, so I have an appointment to go back. I am pregnant, so it is making this worse, because my options are limited. Although I hate it that other people are going through this, I was glad to read about other's experiences. Good luck.
June 26, 2003 - Lisa I have read through the first 15 or 20 posts and feel like crying! For one, others know my pain, for two, there may not be a cure! I am a 45 yr old female, started having numbness, pain, dizziness, eye problems a year ago. They found an enlarged vein in the pons area of brain where the trigeminal nerve stems. They cannot do anything about the enlarged vein. I'm taking tegretol, and while it helps control the pain now, I still have eye movement problems and dizziness and do not like the numbing effect on my brain from the tegretol. Like all of you say, no one really understands because there is no visual or tangible problem, like a broken arm or leg. God awful headaches. The pain in my ear is the worst. Left side. Ice pick, over and over. And the tooth and jaw pain! Sometimes ice pick pain in my eye and temple. Yes, I have wanted to pull all of my teeth, and at times even shoot my head. They say I will not die from it, only with it. That is because they don't understand how horrible and depressing this problem is. Thank you all for sharing. I am glad I am not alone.
June 19, 2003 - Diane I now am in the last stage of TN. What that is nothing helps. I have taken almost everything. I am going to go to the the surgeon the first of July. I am now taking 4,800mg of neurontin 1,800mg of trileptal an 80mg of baclofen and still have break-thru pain. I have had this since April of 1991. I know how you all feel. It started with a few attacks a year and I controlled it with tegretol. Now my life has stopped. I had to quit my job of 11 years. I have thought of ending my life several times, and only the love of my family gets me through. I will give this surgeon a chance, but if that does not work. I will have to give it up.
May 25, 2003 - Dwight (DDS) I have had great results with TN through jaw alignment therapy. Some patients I have to send on to my coworker MD for blood thinning medications due to hypercoagulation syndrome. The treatment for jaw alignment is AM and PM splints which put the lower jaw on the same trajectory as speech and wide opening. This is done with jaw tracking equipment (kinesiograph). Then the bite is precisely adjusted with EMG verification. Most dentists that do this work belong to the ICCMO organiztion.
May 02, 2003 - Barbara I woke up one morning with excruiating pain in my jaw, went to ER, got a pain shot, and was referred to a neuorologist. I was told I have TN, which was caused by a blow to my jaw about fifteen years ago. I was prescribed tegretol and I took that for two weeks and it went away. My symptoms were pain so bad I didn't want to live any more, sensations in my jaw on left side only felt like pins and needles sticking me and then it would go num and that was throughout the day all day long. Any movement would set off the sensations. My jaw locked for three weeks and I couldn't open my mouth maybe inch or half an inch. I thought I was going to die from this, if not this starvation because I would have to hold my head up just to pour water in my mouth. After the tegretol I did a lot of praying. I was so scared the pain would come back. I was told I would need surgery and that was back in 1999. I'm afraid of going under the knife so I didn't do that yet. It's been almost four years now and the pain hasn't come back yet. As of now the pins and needles and numbness have covered the whole left side of my face and head and itches so bad I scratch and make sores on my forehead. I get so scared of what may happen not knowing what's going on. Sometimes I take ibuprofen and it seems to help with the tingling. For now I do a lot of praying just to get through this. I thought I was the only one in this whole world that has this monster of a problem that no one sees and can't be fixed. I sympathize and my prayers are with everyone. By the way I know my TN problem wasn't caused by dental work because I've not had any at all. I live in Texas Does any one know of a physician who does millimeter waves? Please respond and thanks
April 26, 2003 - Sharon I just had neurosurgery on Feb 26 2003 to relieve the pressure on my spinal cord. This was causing me to have partial paralysis on my left side. It has been 2 months and now I have developed this numbing and burning sensation from my forehead to my lower jaw on my left side. The neurosurgeon clamims it is not a result of the surgery but maybe trigeminal neuralgia. It is not continuous. It may appear for a few days and then is gone. However each time it happens the pain gets worse. I was wondering if anyone else has had this experience. Also the headaches are almost blinding. I am on percocet but it does not seem to help. I am also waiting for an MRI. Thanks Sharon
April 24, 2003 - Barbara I have been diagnosed with Atypical Facial Pain. I have had this pain in the right side of my face, on the cheek bone, below my right eye. It causes a lot of pain and pressure-like feeling even to my nose. Its debilitating. I have been on Neurontin, Verapamil, Prednisone, all kinds of anti-inflammatories, with no help. My neurologist doesn't believe it is TN since the pain has been constant for one year, 24 hours, 7 days a week. Does anyone have any suggestions? Appreciate it.
April 18, 2003 - Sharon In 2001, I was washing my face one afternoon and had this "thud" of pain above my eyebrow which continued every time I touched that area. The pain I had was from the eyebrow to the temple, through my eye to my nose. Five doctors later, I was finally diagnosed with TNN. I was finally referred to a neurologist who put me on Tegretol (200 mg 3x a day). After a month of taking it, I had severe abdominal cramps, and I was taken off of it and put on Dilantin (100 mg 3x a day). After 6 months I was pain free, and went off of it. Six months later, the TNN came back with a horrible vengence. You could hear the crackle as the pain went thru my temple and my eyes. The neurologist immediately put me on Dilantin (100 mg) (9 in one day to get above the pain barrier), and then continued 3 times a day after that. Seemed like I was under control, then I regressed instead of progressed. I was having up to 30 attacks a day. The neurologist upped the ante to 4 dilantins a day. Yesterday, the attacks hit my eyes. I could not blink, nor move my eyes. The throbbing pain was escrucheating. It was all I could do not to scream. Someone from work took me to the emergency ward at the local hospital. This pain continued for 20 minutes. By that time some of the pain had subsided. The doctor told me she had contacted my neurologist and he put me back on the Tegretol (only 100 mg a day) along with the Dilantin. She released me to go back to work. On the way back to work, that horrible pain started again (only worse), so I asked the person driving to take me back to the emergency ward. This pain lasted 30-40 minutes before it subsided. I took a CAT scan (normal) and 2 blood tests (one for the dilantin level and the other for sedentary (?) value of the blood. The dilantin level was high (29) and the other test was normal. Today I have had probably 12 attacks, but they are still coming around. Fortunatly they have been only "1 timers", and not the continuous kind. I am ready to try anything, but from what I have been reading from all of you, it seems like nothing is going to work. I am 60 years old, female, otherwise in great health, happily married to the most wonderful husband ever and am too young to go thru this kind of hell. Is there no hope? I love it when the doctors say "we know of your pain". Like hell they do. My response to those who say that is "oh, so you have this horrible thing happening to you too,....isn't it awful?" Some actually have the courtesy to lower their eyes and apologize.
March 30, 2003 - Miiriam After having two root canal surgeries, I thought my problem was solved. I am a 71-year-old woman and my tolerance for pain has become weak, so when I drank some hot tea and shrieked from the pain, I made an emergency appointment with my dentist. He was baffled and admitted it. "The best we can do," he said, "is try Sensodyne." I did, but it was no help. I ate and drank only tepid food, swallowed so that everything went down the middle of my tongue It also helped to become a mouth breather, but I was getting desperate. Then I rememberd reading somewhere about a pain even worse than passing a kidney stone. I knew then what I probably had. I haven't seen a neurologist yet nor talked with my dentist. I came to this website. I shall read & read and learn more.
March 29, 2003 - Stephanie Hi, I was diagnosed with trigeninal nerve neuralgia over 10 years ago at age 23, at the time it was called tic-delaroux. I experienced the pain about every year and it only lasts a few days. The first onset was the worst and this episode lasted a few weeks. I, as many others, have sinus problems and a lot of teeth work that has been done throughtout my whole lifetime (root canal, wisdom teeth pulled and a lot of cavaties). During the pain, I get a numbness in my scalp and ear pain. Sometimes at night I get a sensation in my outer ear. I have only been taking ibuprofen and it seems to help a bit. I am not sure if I should see a specialist ("if it ain't broken don't fix it") and I am not sure if it gets worse with age? Does anyone have any suggestions? Thanks. Stephanie
March 19, 2003 - Mike My father has had TN pain after a tooth removal. He is up to 2400 mg Neurontin a day and it doesn't help. He heard about a procedure which involves alcoholic shots to deaden the TN but his neurologist doesn't want to do this procedure. Please let me know if you have any information about TN or this procedure and especially if you can help me find a Neurologist in New York area. Thanx in advance!
March 12, 2003 - William Yes I have had this horrible problem now for 5 years. After a year or so it went away and now it's coming back on me and I'm getting very nervous that it will be a full blown case like I had a few years ago. I'm now living up in the mountains miles away from a town but I did find a doctor that is familiar with this problem in Asheville, NC so if anyone needs a doctor here let me know. Also if anyone needs to talk to me about this please feel free to do so, or if you have any ideas on how to treat this. I had a tooth extracted about 10 years ago and I believe this is what started it. I am on Neurontin now but it's too early to tell if it's helping. Good luck to you all. This is really a trip into hell with this pain. I truely feel for you all and pray there will a cure someday or at least a way to control this. Good Luck! William
February 22, 2003 - Lorraine I have trigeminal neuralgia too. I have had it for 5 years now. It happened 2 months after my husband passed away. I thought it was stress. I went to a dentist and had x-rays taken and there was nothing wrong with my teeth or gums, so I went to a neurologist and he sent me for an MRI then he diagnosed the trigeminal nerve or (tic- douloureux). I refused tegretol and neurontin. I told him I would go to an accupuncturist. He told me to try that and if it helps me, he said to go for it. That is the only thing that helps me. But right now it is real bad. I have been going to an accupuncture therapist for about 4 years. Sometimes it goes away for 6 months or so but it does come back. My accupuncture therapist has moved so I have a new one. She is not as good but I have to give her a chance. Life is really miserable with that pain. I would like to see a famous person have that maybe they would do a lot more research on it. All I can say is good luck maybe someday they will find a cure. Let me know if you hear of a cure.
February 16, 2003 - Ann I would like to know if anyone has symptoms like mine. In 1995 after a shot for a dental procedure, I have had burning like pain in my cheek, teeth, gums and tongue. Also soreness in the neck and down my arm. I have taken all the medicines that are normally prescribed for Trigeminal nerve pain to no avail. I am now going to a doctor in San Diego who specializes in Trigeminal pain. I am hoping that something can be done. If I am successful I will reply to all of you.
February 14, 2003 - Alexandra Hello everyone,I feel your pain. I have have TN for approx. a year now. I was actually disappointed that I didn't have to have a root canal. I have read about all different kinds of symptoms mainly on the right side of the face; mine is on the left. I have the numbness & tingeling. I have been treated for shingles, had a CAT scan several x-rays, this has to be the most horrible thing God ever created. I have often thought just ending it all, thank God I have my children. From reading info on this I firmly believe it all stems from something so simple as grinding our teeth. Not everyone knows if they grind their teeth. I myself have been doing it since I was a child. I am 40 now. To me it only makes sense. If anyone else believes my theory let me know. If the doctors can't figure it out maybe we can. There has be to a common denominator. If anyone has had the millimeter waves please let us all know what happened. Thank you.
February 02, 2003 - Margaret I had a sinus infection over the holidays, and, even after antibiotic treatment, the pain in my right ear spread to my face and jaw. It became worse and worse. I had CT scan of sinuses, which was normal. My family doctor, who is fantastic, diagnosed it as TN, and put me on Neurontin and pain meds. I continues to have sudden, unbearable, pain attacks and wound up crying over the pain (something I have not done since I was 7) and spending the entire night in the ER 3 weeks ago. I already know that Morphine has no effect on me, but I found out in the ER that Demerol no longer works either. They finally had to put me on Lortab, which makes me itch unbearable, but with large doses of Benadryl to control the itching. some days are bearable and, with the pain meds, I can function well. Other days the pain meds don't work very well. I am up to 2400 mg of Neurontin a day. some days I have to take 6 of the Lortab 7.5/500 mg pills a day, along with some Benadryl. Last night I decided to try some Capsaicin cream, as the pain meds were not working so well. It burns a lot at first, but is bearable. What I don't understand is that I seem to be much more a zombie and dizzy/sleepy since I have started using the Capsaicin. Is it possible for the Capsaicin to make me feel this way? I can hardly hold my head up - much worse effects than I have been having from just the Neurontin and the Lortab. I have a lot of ulcers in my mouth, too. I go to the neurologist in 2 weeks - earliest appt I could get. I had MRI and MRA (arteries) as well as a CT scan of my brain in the ER. They did another MRI with contrast and thin sections, which showed that there is a swelling or inflammation in the back of a sinus, pressing on the trigeminal nerve. I have been on antibiotics for over a month with no relief. I don't know what else to do. I can barely drive, and cannot drive at all at night because of the side effects of the pain meds. Please contact me if you have any ideas that could help me, or have tried the Capsaicin.
January 24, 2003 - Hermene Dear Thomas, I read your December 22, 2002 posting. How was your visit to the Dr.? Did you get the surgery? If you read this I hope you are doing well. I am on Neurontin now 2400mg a day. WOW! I have an appointment in April 2003 with a Neuroligist who specializes in pain. I am wondering what he will say. I too had a negetive MRI. What is wrong with us? Bless you. Hermene
January 23, 2003 - Janice Two years ago I had a basal cell carcinoma removed from the bridge of my nose and since then I have been having tingling sensations on both cheeks and it is beginning to move down around my mouth and up to my forehead. It happens about every 3-4 weeks and lasts about 1-2 hours. Could this be something that happened during the surgery? They did the MOHS surgery but it was very painful. I never experienced this until after the surgery.
January 15, 2003 - Thomas I was diagnosed in 1984 as having trigeminal neuralgia so sever I wanted to die, and attempted to twice. Anyhow, I wound up having 3 microvascular decompressions 6 months apart to no avail. Then I went thru 2 gamma knife surgeries, to no avail. Then I went thru glyserol rhyzotomy, also to no avail. Each procedure lasted me no longer than 6 months. But of course they weren't 6 months apart, they were spread over several years. I've pleaded with them time after time to just cut the darn nerve! Nobody wants to do that. I've studied my problem extensively. Have procured accurate pictures of the nerves where they exit the skull and am prepared to sever them myself if and when the pains return. At the moment I am doing just fine. Am on a diet of neurotin and tegretol combination. Been great for one and a half years. (knock on wood) I know of only one person who can honestly say she was cured. I've talked to dozens of people who have been thru one or more proceedures and never even close to being cured. As you can see I'm willing to try anything if it comes back.
December 22, 2002 - Thomas I noticed a sharp pain at work one day. It was something that I had never felt before. So I went to the Campus Nurse, because I was a student at the time. She treated me for a sinus infection first. I tried it for two weeks and no help. So she suggested going to the dentist. So I went and he said I had a dead tooth. I had a root canal done, and was put on methadone. I spent 2 weeks on it, and no help. I decided to go to a generic neurologist. She put me on Tegretol. I was on it for 1 month, and it went away. But after 9 months of freedom, it came back, and even worse. So I consulted a real Neurologist. He made me go get a MRI. It came back negative, with no masses, or tumors. He then put me on Neurontin. I spent 1 month on this. It made me tired all the time. After this he put me on Baclofen, on top of the Neurontin. This didn't work either. I am in such pain, At first it was just every now and then, but now it is a constent pain all the time. I used to be able to pinch the bottom of my nose and it would go away, not now. It hurts to eat, brush my teeth, take a shower, or even talk. I have an appointment tomorrow, and my doctor is already talking about surgery. I think I am going to do it. If it relieves the pain, I am up for anything. Please leave comments if you have any. Good luck to everyone with this with this discomfort.
October 24, 2002 - Beth I have been having the pain of Trigeminal Neuraligia for 8 months now but I was just told that I have this awful illness. I have been put on tegretol XR 400mg twice daily. The pain started out feeling like I was having sinus problems. I went back and forth to hospitals and doctors then it got worse and started feeling like someone was taking a ice pick and stabbing me over and over in my right ear and mouth and just the whole right side of my face. And since it can't be seen nobody believes I have any pain; but it is there! I just wish I knew what caused it and why it can't be cured. I had a CTscan and it came back good so I should be healthy but I'm not, why?
October 15, 2002 - Caitie Rose On 09/10/01, I entered into a hell I could not have imagined. Prior to this time I was a healthy 34 year old woman who had never had a cavity or any dental work. A new dentist found 8 cavities and proceded to fill 2 that day. Over the next week the pain increased and I was told I needed a root canal and the dentist told me to take 4 Motrin every six hours for pain. Over the next few weeks the pain didn't go away and the dentist filled 4 more teeth, causing me to need another root canal on one of the fillings. The dentist kept telling me to take Motrin, he knew I was in constant pain and was taking it around the clock. Then I started to get stomach trouble due to the Motrin and he started prescribing Vicodine. I had a terrible pain in my forehead, which he said was a sinus infection (however I've always had sinus problems and have never felt this pain before). He kept giving me prescriptions for antibiotics, and then I had a terrible pain in my back jaw. He said I had a pulp-stone and did another root canal (3rd one), this was done and he later filled 2 more teeth. My insurance only covered $1000, so most of this was out of pocket and I was in pain and miserable all the time. After 4 months of this I started having severe stomach trouble and this lead down the road to having dozens of doctor and specialist appointments, them prescribing me about 50 prescriptions, and several tests including a upper GI Endoscopy (doctors were thinking I had an ulcer due to the meds, or GERD, etc). I couldn't eat anything without being sick. Finally, in March 2002, my gastro doc tried Amitriptyline, thinking my stomach trouble was actually visceral hyperalgesia pain. After about a month, my stomach problem cleared up but I still had terrible facial pain. I had stopped all pain medicine while I was so sick to my stomach, not that they really helped anyway, so I was just in constant pain. I had pain at both temples, but it was much more severe on the right side and the pain was all over my right side of my face, and behind my right ear. I missed over a month of work and was paying nearly everthing out of pocket due to a limited dental plan and a high medical deductable. During this time I had my wisdom teeth extracted, as a possible source of the dental pain. I was sent to a Neuro specialist, who did a MRI and other tests and diagnosed me with Trigeminal Neuralgia. He increased the Amitriptyline from 25mgs to 50mgs a night and put me on Neurontin, which was eventually increased to 2400 mgs a day. This helped a little but I was still in a lot of pain. I had changed dentists as the earlier one had done me such a disservice. I was constantly going to this new dentist (one I actually used to go to as a child) to get my bite re-adjusted. I had a big cross-bite due to crowns installed by the previous dentist, but before that I had had near perfect teeth that never needed braces. Finally, my bite was adjusted enough that my left temple pain went away. I had to have a 4th root canal done on another filled tooth and then one root canal redone as the previous dentist had forgotten a MB2 nerve. Recently the pain around my ear/temple on the right side, seemed to get worse. I was told I had an infection in two of the roots of one tooth the previous dentist had filled and would need a 6th root canal. The bite on this tooth had never felt right since the dental work and since the nerve was dead in the tooth above it, I chose to have both teeth extracted, rather than have root canals. I had hoped this could cure me of the trigeminal nerve pain as they were on my right side. It did not, the pain seem to get worse and I was given a prescription for 300mgs Trileptal a day. I was at my wit's end as no prescription seemed to work, I was in constant pain, I had lost over 1 yr of my life and at least $10,000 due to the first dentist. The only thing that got me through this year was magnets. I would tape or strap them on the painful areas and it would take away or at least lessen the pain. At home I was never without my magnets and I didn't leave home for much else but to work and do the essentials, during which time I was usually in great pain but did get some relief from Neurontin. Last Friday 10/11/02, I tried auricular acupunture at the outpatient rehab of our local hospital. It was amazing how when the therapist inserted the needle in 1 place in my ear, I couldn't feel it, the next - it felt like a pin pick and the next place - it hurt like hell, for just a second and then the pain was gone. The therapist said he had to put the needles (about 4 of them total) in the places that hurt, in order to do some good. The therapist put tape over the needles and told me to come back on 10/15. After this was done I didn't feel much different (my ear was slightly sore) and was disappointed that I had tried another thing that didn't work. However, the next morning was amazing! I awoke to no pain and had very little pain over that weekend. The little pain I had, had moved from being all over my right side, to just being behind my ear, so I was able to cut a small piece of magnet to fit over my ear, to wear out in public. For the last 3 days, I have felt better than I have in over a year. I am scheduled to go back today and may have a couple more appointments according to the therapist, but I can not believe the improvement due to 4 needles in my ear. I just had to pass this information onto anyone suffering from Trigeminal Neualgia due to dental work. Try magnets or auricular acupuncture, they are the only things that worked for me. I wish dentists would understand the hell they sometimes put people through with their negligence. God bless all of you who suffer this type of pain.
October 15, 2002 - Gloria I've had left side problems; eye focus/pressure, facial pressure;numbness, tiredness, nausea, can't sleep at night, feels a little numb down left side of body, for over 2 years now. Had 2 MRI, one last Dec, 2001 and the June, 2001 before. Size didn't change, but still have same symtoms. Typical answer from doctor; have MRI done every 3 - 6 months. Blood tests ruled out diabetes, MS, etc. Don't know quite what to do. Neurosurgeon or neurologist are no help; not important enough I guess. I may try an endrocronolgist and see what they have to say. With a 2000 dollar deductible and other items not covered it gets pretty expensive to cover a doctor's butt.
October 10, 2002 - Hermene I have just read all your comments. God Bless you all. I have had Trigeminal Neuralgia for 15 years. I have been through hell trying to get this diagnosed. From TMJ to Fibromyalgia, I have been told. Every doctor wants to try something different. I have taken meds which have offered no help whatsoever. My pain started out on my left upper cheekbone as a weird touch sensation. The lightest little touch sets off this deep throbbing that starts working itself thru the whole nerve branch. Now I have it on both sides of my face and it radiates all the way down the side of my face to my mouth. It's difficult to sleep with the pillow touching my face. It was suggested that I get a nerve block but I am scared. The person who wrote about the nerve block - how are you? I would also be interested in this millimeter wave treatment. Someone please write back to me. I didn't realize so many of us are afflicted with this. I thought I was crazy. No one understands. Thank you for reading this.
October 09, 2002 - Debbie My sister-in-law (41 years old) started out with a numbness on the right side of her chin. This started 6 months ago. Now she has numbness on the entire right side of her face along with a slight sensation in her throat, ear itches down deep, along with slight pain in her teeth, which she attributes to clenching while at sleep. This does come and go with only a cyber second in between, so therefore it does feel constant. She is now on Neorotin 300mg 3x/day. This does not help at all actually it makes her very dizzy and sleepy. She has been to her family Dr., Neorologist, Ear, Nose and Throat Dr. and a dentist. None of these professionals can diagnose her. She feels like everyone including the professionals think she's crazy since you cannot see this by looking at her, however when she looks in the mirror it appears to her that her face is swollen slightly. Can anyone help with some direction here. She has had an MRI which came back fine. This is driving her crazy and is seeking any help at all if any of you can help I would love to hear from you. Even if to send her to the right professional. Is there simply a test that can be ran to check this??
September 26, 2002 - Donna I would appreciate the opportunity to hear from anyone about their treatment and/or symptoms of trigeminal neuralgia. I have had this for about 6 weeks and I am going crazy.
September 13, 2002 - Debbie I first noticed something wrong about 8 yrs ago. I would wake up in the morning and be fine, and then around mid-day I would get this sensation on the right side of my head; my eye would feel pressure, my sinuses would feel inflammed and my throat would be sore. It started out as occasional, but progressed to almost daily. I thought it was a sinus problem, so I was taking Alka Seltzer Allergy/Sinus and this alleviated the sypmtoms. This went on for about 2-3 yrs and then the sensation changed to actual pain on the right side of my head that then emanated down the back of my neck and my back. I thought that sitting at the computer all day was now the cause of my neck & back pain. I started seeing a chiropractor and getting massage. Nothing really worked. The pain would occur in cycles that would last anywhere from 1 - 4 days, strengthening the longer it was there until it was almost unbearable and then it would be gone. For a while the pain would be gone for a week or so, and then start over. Over the next few years the cycles started getting closer & closer together until there was virtually no relief at all. At that point I started getting some pretty bad migraines. I went to the doctor for the migraines and told him about the other "pain" in my head that was not a headache. He acted like I was just a hypo-chondriatic female. He referred me to a nuerologist. He sent me for CAT scan, MRI, did pinched nerve testing and had me taking a handfull of muscle relaxers & sleeping pills. I also went for 3 months of physical therapy. All the while I kept telling him of the "pain" in my head that was not a headache. He ignored me. At this point the muscles in my neck & upper back were basically siezed and I was in so much pain between the head and that that I would just lie in bed and cry sometimes. After a year of this "treatment" I thought that there was nothing anyone could do for me. I then went to get my eyes checked because my sight was getting worse, and lo & behold, the optometrist said my optic nerve was cupped. When I told him of my pain he immediately referred my to a neuro-opthamologist. This guy diagnosed the TNN and prescribed amitryptolene. It was a wonder for almost a year. It stopped working in June and the eye guy has me on the nuerontin 300mg a day now. So far I'm not seeing much improvement with this drug. And I've started with migraines again. I'm due at the doctor in October for follow up. Hope he has another rabbit in his hat. I can stand pain pretty much anywhere in my body, except my head. I will be asking him about this new treatment for sure.
September 09, 2002 - Larry I've been on Tegretol for 6 years and it has controled my TN quite well.
July 27, 2002 - Sandee I have been living a nightmare for 11 years. It all started with a pain in my left cheek. I went to the dentist and he did a root canal. Unfortunately, the guttapercha was pushed up into my maxillary sinus which created more pain/problems. I had an appeoectomy (where they remove the tip of the guttapercha). The pain increased. I had the tooth pulled. The dentist thought it might be the other teeth, so he sent me to an Endodontist who did two more root canals. The pain was still there. Was hard to determine whether it was the sinuses or the teeth. I did end up with a sinus infection and had sinus surgery on the left side; I also had two more teeth removed. All the CAT scans and MRIs show nothing but believe me the pain is unbearable. Morphine and hydrocodone do not relieve the pain. I am going to have a Trigeminal Nerve Block done next week. I hope and pray that this will help. If not, am going to go to Johns Hopkins - there has to be someone out there that can help.
June 17, 2002 - Stephen My eyesight has been getting worse and it appears to be coming from my teeth -- specifically my upper molars. Dentists and dentists can find nothing wrong although one dentist said I had some sort of "interference" field coming from my teeth. I get sudden shutting sensations that have gotten me lightheaded and fatigued for years and nothing seems to work. Can EMF treatment work for me?
June 03, 2002 - Jamison I am a 43 year old healthly female, but out of the blue I started having a "very icy cold feeling" in my lower right jaw and on some parts of my right side of my face. Went to a neurologist and he ordered a MRI with contrast. Everything was normal and he said I had trigeminal neuralgia. He put me on trileptal. I don't have pain in my face that I have read about that is common to trigeminal. Has anyone had this cold feeling before?
October 17, 2001 - Maria My mother had the shingles 3 years ago and for the past 3 weeks has been in excruciating pain on the left side of the head, around her ear. She has finally been diagnosed with a swollen trigemina nerve-or neuralgia. She has been put on Trigetol but the doctor told her that if she does not get better in 5 days they will need to operate. Reading the comments here I'm wondering if the operations work and I'm concerned about serious side effects such as loss of sensitivity, etc. Any comments?
August 11, 2001 - Elyse I had a second molar on the bottom left side of my face filed down for a bridge two months ago. The tooth began to hurt so the dentist sent me for root canal. The tooth still hurt terribly even after the root canal so the tooth was extracted. I felt fine for two days and then the pain came back. Do I have trigeminal nerve damage? I don't know but it's very painful.
February 17, 2001 - Phyllis My mother had three surgeries on the trigeminal nerve because of so much terrible pain. The third time they cauterized the nerve and now both sides of her face feels almost nothing and both eyes burn and blue and are almost dead feeling, also she is seeing less and less and the feeling around and in the eyes is like a fast butterfly wings going all the time. Is there anything that can be done to relieve this or reverse the cauterization. Evidently they got to nerve branch that went to her eyes also. Thank you for any information you can give us.
February 09, 2001 - Karlette I was diagonised with Trigeminal Neuralgia Dec. 1st of 2000, I have had chronic pain since September 2000. My pain is primarily around my left ear, in front and below, my teeth hurt on the left side. I do not have facial pain, but tenderness in the jaw area. They are still treating me with medicines at this time. I am taking 900mg of Neurotin during the day and 400mg. of Dilantin. They say I am not a classic case of Trigeminal. I need to know if anyone else out there has experienced the same problems. I am not able to sleep on this side of my face now and I do not chew food on my left side. I try to have everything I drink at room temperature and even though I wrap up good when I go outside my body seems to know when I step outside. Someone please let me know. Thank you
May 17, 2000 - Donna I am wondering if this would work for brachial plexus? The pain is constant every day and night... Any help for nerve pain for brachial plexus.
November 20, 1999 - Brian I have had total numbness over the right side of my face since 1988 as a result of the "shingles" virus. I take Elavil and Ativan but it does not help much anymore. I have no pain but "crawling sensations" and somtimes my face feels very tight. Are there any meds out there that would relieve the 'Sensations" ? If so, please let me know. Thank you.
October 01, 1999 - Cheryl I have had Trigeminal Neuralgia for about 6 months. The medications have not helped. My teeth, jaws, head, and neck hurt all the time. People don't understand because it's not something they can see. If you know something that will help let me know. I'm taking neurontin 300mg 5 times a day and carbatrol 200mg 3 times a day and carbatrol 300mg 1 time a day.
August 19, 1999 - Ron Is this procedure available in Canada?
August 05, 1999 - Laura I have had Trigeminal Neuralgia for almost 12 years. I am 38 yrs. old. I eat right, I pray right, and I am a good person. All that making me understand this could happen to anyone. I have found relief in a lot of different sources. Magnet pillows took the pressure off my jaw from clenching. Meditation helped to relieve stress which is a big trigger. I had 4 years of relief and had a severe eletric shock from a vending machine and now its is all back. People don't see my pain so they don't think I have been injured. I also have possible nerve damage in my neck and shoulder. I would love to chat with someone who needs support and would not mind being supportive. God bless us all and may you pain fade away.
November 09, 1998 - Julieann For 4 years I have been suffering with Atypical Facial Pain (bilateral) and have had no relief with the many meds, antiseizure, antidepressants, anti-inflammatories, muscle relaxants, antihistamines, antipsychotics, and narcotics. I have tried heat and cold, relaxing or working. Nothing seems to help. Even the teeth that were hurting me were pulled and I still have toothpain in those areas. The teeth that were removed were healthy and sound, it is not a dental problem causing the pain. I am interested in exhauting my search of non-invasive procedures, as I feel that a cerebral cortex implant is my next and only option.
October 01, 1998 - Lori I would love to know where I could try this Millimeter Waves procedure. I would try anything at this point. I have TN for 9 years now. It is on the right side lower jaw. Tegretol no longer helps, and my dose is up to 1600mg. I would love to find out about that Millimeter Wave precedure. If anybody knows where it is done please write me.
May 22, 1998 - Marty ( I just started having discomfort in the right corner of my mouth, just a feeling of numbness. The area has now increased to the entire right side of my face. My doctor has prescribed percoset (sp) and it was my option to take it. I have not filled the prescription as I believe in spiritual/natural and nutritional healing. I am now experienceing a dullness in my hearing on that side. Again not major but I can feel the difference. Just wondering if anyone else has experienced the same. I also notice that the more I talk or move the more I can feel the numbness.
March 14, 1998 - Blardone I've got a problem with one of my friends. He is paralysed in the face because of a problem with trigeminal nerves. French doctors don't know how to cure him. He had a lot of medical testing without any success. If you have ever seen that please tell me; his state is becoming worse and worse.
February 20, 1998 - Brian Anybody please help us! I'm a 27 yr old and have had to see my mother go through excruciating pain for over 25 yrs; she is about ready to call it quits because she no longer can take her med's do to high toxins in her blood and a variety of surgeries did not work making the pain intolerable. Could someone please let me know about new treatments and any information about which of 4200 web sites on pain might be the most beneficial.
February 09, 1998 - Philip I have been suffering with severe pain. I was given a shot of 200 milligrams of an antibiotic, rocipian, the next day the left side of my face broke out with fever blisters and there was severe pain. I think I had shingles since just one side of my face was affected, and also my upper teeth on the left side are numb. I was given the shot on Dec. 8th 1995, and have been in severe pain ever since. The pain seems to be more severe at times. I also suffer from headaches. The trigeminal nerve on the left side of my face seems to be the area that has been severely injured. It has been over three years and there doesn't seem to be any indication that it is healing. I would like to make contact with someone that has had those problems and is now cured, to get some ideas on what I might do to solve my problem.
January 26, 1998 - Debbie I have had numbness on the right side of my head for over a month now. Last week I went to the E.R. for this, the right side of my face looked like it was collapsing. The E.R. doctor ordered a C.T. scan which came back ok. He put me on steroids for six days. The numbness did lighten up, but never went away. The numbness I am having I can feel coming from the base of my neck. It effects the entire right side of my head. Almost like you could draw a line down the middle. It is driving me nuts. But when I went to the E.R. they made me feel like I was wasting their time. I can't hardly stand this. My forehead, lips, cheeks, eye brows, skull area and my base of my neck are numb. IF it is not bells palsy and my C.T. scan was normal then is this a common symptom, and what causes this? I just can't stand the numbness. I can't take my mind off it when I just can't get used to it. A ny suggestions? I am not asking for medical advise just suggestions. IF a C.T. scan comes back normal then really I am ok right?
November 8, 1997 - Pat I am very interested in further information regarding treatment for trigeminal pain. I have recently had an alcohol nerve block of the infraorbital area due to severe pain for over one year. This pain is not the typical lancinating pain described in the articles, but began as a dull ache and feeling of fullness in the R maxillary sinus. Ct and MRI revealed nothing. I am currently taking neurotin and valium and vicodan for severe pain. The alcohol nerve block has caused quite a bit of swelling and there is less pain but the aching "pulling" sensation remains 5 days after the injection. What next? I cannot live this way.