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: Della R.
Email: none
City: RockSprings
State: WY
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Neurontin, antidepressants, Ambier CR
Comments: so tired
Date: 12/27/06

I have had this for several years, but was just recently dignosed with TN, I was back in forth to the dentist,root canals, ENT, two surgeries, many treatments of antibiotics. I am doing better no severe pain right now. I do get eye pain vision problems and my top gum on right side throb. I have been so very tired and weak, so I am thinking that is from the medicine. I get really discouraged I feel good for a day or two and then all I do the next couple of days is lay around and sleep. Has anyone else experienced this lethargy??

Name: Jennifer C
Email: Private
City: Gainesville
State: GA
Country: usa
Diagnosis: Trigeminal Neuralgia, Atypical TN
Treatments: Lyrica, Neurotin, Tramadol,
Comments: anyone near GA
Date: 12/08/06

I am looking for anyone in the Atlanta area (within 200 miles of Atlanta, GA) that has TN. Please give me advice on any doctors you have used that have given you relief, etc... I am looking to switch doctors or try anything to help with my pain.

Name: "Jamie"
Email: Private
City: Toronto
State:
Country: Canada
Diagnosis: Trigeminal Neuralgia
Treatments: MVD and a lot of different meds that don't work
Comments: Trigeminal Neuralgia is death
Date: 11/21/06

Well after two and a half years of suffering, and many, many meds, that did not work at all, I have had the surgery I had hoped for, in an effort to alleviate my pain. The surgery I had is called Micro vascular decompression. Unfortunately, I am in the three percent of people who have suffered major neurological complications due to this procedure. Immediately following the surgery, I had total paralysis on the right side of my face, and vertigo that was so severe, I was unable to eat anything for five days, but was able to have sips of water through a straw. I also had major pain and massive swelling. (My surgen told me I could expect to recover from the surgery in about two weeks - Ha, yaea right, what a lie!) The severe vertigo lasted for at least a month and I could not open my eyes or have any noise for this entire time. I also suffered moderate vertigo for at least six months after the surgery and still suffer from it to this day, sometimes losing my balance, not to the point of falling, but to the point of stumbling backward a few paces. When something moves by me at a high rate of speed, it sometimes hurts my eyes to the point of having to close them, and makes me feel a little sick to the stomach. As for the facial paralysis; the total paralysis lasted for about four months, give or take. Today, a year after the surgery, I am left with excruciating electric shock pain in my chin, cheek, forehead, throat, temple and eye. I will probably be left with, for the rest of my natural life, total loss of feeling on the right side of my tongue. (Although there are times that I suffer severe pain in that side of the tongue that lasts for days). The right side of my tongue also feels frozen (temperature) all the time. The right side of my mouth does not work right in general and sometimes it cannot hold liquid or saliva. My eyes do not blink in unison and my right eye ball is pretty numb. I still have some numbness and paralysis in the right side of my chin, cheek, forehead, and face in general. My mouth and right eye seem to want to work in unison, so talking and chewing always cause my right eye to water profusely, and if that isn’t enough, the pain has not been relieved. I still live with daily electric shock pain in my eye, cheek, jaw, throat, temple and forehead. The throat pain often makes it difficult to swallow, and laughing seems to be a trigger for the throat. And God only know what triggers the rest. Talking is very challenging as well, do to the pain it causes. Five or six times a month, I suffer the crushing pain as well, although I believe the surgery has relived 70% of this part of the disease. I also suffer from weekly excruciating earaches; they are so bad that I cannot touch even the outside of my ear. I cannot lay on my right side because the pressure on my face will cause an attack. In any given month without warning, I am completely out of commission for at least two weeks consecutively. The other weeks in the month are filled with painful attacks, but I am sometimes able to at least get out for a walk or something, I never go far from home because I know I can be struck by an attack at any time, and often am. Sometimes I get lucky, though, not very often, and can have an enjoyable day, when this happens I try and make the most of it, but it always ends the same way, pain and panic. As a result of this painful disease, I have suffered major depression and have developed a panic disorder that is being treated by a psychiatrist. I continue to work with my Doctors in search of a remedy. The outlook to me seems bleak, but one must try to keep their hope alive, for me this is a daily struggle. I'm not even sure if I should continue to go out and enjoy the good days, because they are soooo good that when the pain returns it is devastating. How will I survive this, its been so long, I am only 36 and have already had this pain for three years, I am not sure I have the endurance to survive three more. Jamie

Name: charles b.
Email: carlofimi@aol.com
City: hollywood
State: fl.
Country: u.s.a.
Diagnosis: Trigeminal Neuralgia, Glossopharyngeal Neuralgia
Treatments: gamma knife radiation surgery
Comments: ok for two years
Date: 11/13/06

I hope that my story will help someone with the worst pain in medical history. I had trigeminal neuralgia for 20 years taking medications like tegretol 400 to 600 mg.a day and it would helpfor awhile then I switched to neuronton and later to trileptal 300mg 3 times a day I was always afraid of the options that were available with the needles in the right side of my face because they said that the side effects would be numbness in the face and sagging skin so I stayed with medications until the pain was more frequent. At this point I read about the gamma knife radiation surgery and my m.r.i. showed exactly where the nerve was hitting the blood vessel that was causing the pain. They told there would no side effects and that it would be 85% successful so I went for it. I had gamma done in April of 2003 and pain free after that for 2 years. By the end of 2005 I felt like why did I wait all those years to have gamma knife done.Well the beginning of 2006 I was started to get numbness on the right side of my face and slowly into my gums, lips and now my tongue feels burned and I lost the taste and texture of foods almost everything I eat seems sandy and when I drink soda it feels like bubbles on fire. I went back to the neurosurgeon and he said there's nothing he can do that I have to live with it. I would rather have that horrible pain back than to have this numbness and tingling 24 hours a day with no relief, at least when I had pain it cleared up for awhile. The reason i,m writing this is to make sure you have a doctor who don't over dose on radiation and gives the right amount. I would advise to research for a good doctor.

Name: Jim Dobson
Email: cl_Dobson5542@pop-hosting.com
City: Boston
State: MA
Country: United States
Diagnosis:
Treatments:
Comments:
Date: 11/06/06

Name: sue
Email:
City: grand rapids
State: mi
Country: usa
email:  Private
Diagnosis:  Trigeminal Neuralgia
Treatments: upper cervical chiropractic, tegretol
Comments: i pray for all of you, including myself
Date: 10/27/06

After reading all these, i could not stop crying. I know how all of you feel and im glad i get to write to you all. I know all too well the debilitating and excruciating pain with this crap called Trigeminal neuralgia (TN)..i started getting it a couple of years ago; not too bad and it went away for awhile then came back with a vengeance!...finally went to see a neurologist who prescribed Tegretol..worked good i guess for awhile, then heard a compelling story of a gentleman who went to see a Upper Cervical care chiropractor. I went and saw this chiropractor who is in my hometown and had tremendous results!! I started seeing him this past spring (2006) and my pain virtually went away and i went off my meds about a month after i started seeing him. Unfortunately, like i read before, this pain can come and go and of course, its coming back again!! I still see my chiropractor and I guess its time to call my neurologist again...i absolutely hate this crap; its so hard to explain it to people because they just don't understand; especially when my 2 young children see their mom in pain and don't quite get it... I would love to check this site again, if anyone has any other comments/treatments they are trying that have helped...I am a 42 year old woman; was diagnosed about 2 years ago...left side of face. I pray for us all!!!

Name: Bill H.
Email: WEHayes01@yahoo.com
City: Manchester
State: CT
Country: US
Diagnosis: Glossopharyngeal Neuralgia
Treatments: Tegretol
Comments: Never received calls from anyone!
Date: 10/24/06

Hi fellow suffering people. I wrote earlier in the year in May,2006, but nobody seemed to care about any information I might be able to help them with. I guess everyone has all the answers to their painful problem! My problem is the glossophrangiel type (I probably spelled it wrong) if you have it, you're familiar with the terror it can bring. Anyways, when it comes to me I start taking tegretol. Not in small doses, that doesn't work! I start out with 2 or 3 200mg. tablets a day, but if the pain keeps coming, I increase it to a tablet every 4 hours around the clock. That can knock your socks off if your not used to it, but I usually get used to it shortly. I'm still able to drive and work! A couple times I've had to go up to 1600mg's a day, (with my doctors blessing) and then driveing definately is a problem. Your slightly cocked! Fortunately I've only had to stay on doses like that for a day or two! When the feeling you have that tells you your about to get zapped with pain goes away, I slowly reduce the pills by half a tablet or so a day. I've been fighting this problem for 18 years (I'm 59) so I know what I'm talking about. Why don't some of you fellow sufferer's e-mail or write me? I've written in before and given my address, etc. I guess your not hurting enough!!!  Incidently, if your taking tegretol, I find the key is to take enough soon enough to avoid the "Big Pain". The small triggers and funny feelings will tell you when to increase your dosage. Don't expect 2 or 3 pills to do the trick, and then give up if they don't work. We're talking Horror pain here people. Hit it before it gets real bad. If you let the bad pain stay around for even a short time, I think it will tend to come on more often and harder. I just got over a 5 month attack. I only had the horror pain once, when the attack first came on! After the problem was gone for a few weeks, I sneezed and felt it coming on again. Fortunately I took 2 tegretols a day for 3 or 4 days, and the feeling went away again. Like you, It will come again, till then I'm taking it one day at a time and not about to let the fear of the next round take over my life. I'd really appreciate communicating with some of you. I'm not a nut, just a father, grandfather, husband, business president, and someone with a rather rare, illness. Please write or e-mail. And whoever does the posting of these stories, from the bottom of my heart I thank you!

Name: Patricia
Email: waashbridge@hotmail.com
City: Urbana
State: OH
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Drugs, Gamma Knife, Surgery
Comments:
Date: 10/21/06

In 1996 I was at work talking to a fellow employee when I got a sharp pain in the right side of my face which at the time I thought was the start of a toothache, in fact I remember saying I think I'd better make a dentist app. However, after that quick jab it went away for a couple of weeks, when it came back I decided to get to the dentist right away. Following x-rays, which of course showed nothing, I was sent to an ENT doctor who also said there was nothing wrong with me and was sure the dentist had missed something so back I went to the dentist who then sent me to a dental surgeon who also said there was nothing wrong with me. I went to my family doctor who thought it might be TN because by then, not only did my teeth ache, my ear felt like it was on fire and also ached along with part of my lower face. He sent me to a Neurosurgeon who gave me many many different drugs for the pain. None of them worked on the pain just made me feel like a zombie. I would be working, talking on the phone when out of no where the pain would hit so hard that I could not speak. Brushing my teeth would take forever and sleeping was impossible. Some nights I would sit up with pillows behind my head because I could not lay down. One night the pain was so bad my husband took me to the ER. Blood pressure was off the charts. They gave me medication which helped at the time. The ER doctor said Acupuncture might be of help. The neurosurgeon sort of gave up on me because the medicine he prescribed was not working so I decided to try acupuncture but the doctor told me up front that he had never done it for TN so could not project the outcome. Unfortunately, it did nothing. I found a neurosurgeon myself at Ohio State University. He explained the different treatments that were used for TN and what to expect from each. Of course the number one treatment he suggested was surgery. Having a fear of being put to sleep and having my brain exposed did not sound like a good thing to me so I chose the Gamma Knife. Unfortunately for me it did not work. For the next couple of years I was back on pain medication even using liquid morphine. Nothing helped. He said we could try the Gamma again but I chose to go ahead with the surgery. That was three years ago and I have NEVER regretted that decision. Like any other surgery the weeks following were no picnic but I am and have been pain free since then. I hope this has helped if anyone is trying to decide if surgery is worth it. I know from experience that it does.

Name: Dave
Email: david.dalton@teknik.us
City:
State: MD
Country: USA
Diagnosis: Trigeminal Neuralgia, Atypical Facial Pain
Other: Neuropathic Pain
Treatments: Just about everything ... and then some
Comments: Still here ... somewhat
Date: 10/19/06

We all have our crosses to bear, and some bear theirs better than others. For me the cross is pain. Pain so intense that there nothing that takes it away; not drugs, not meditation, not religion ... nothing. For those that I have conversed with, you know the story, for the others here is the condensed version. I was in the Navy when I went to have minor surgery to remove "wisdom" teeth. During the surgery V3 (lower branch of the trigeminal) was almost completely severed. Like anyone with a nerve injury I complained to the oral surgeon and an MD. Both looked at me as if I were crazy. This went on for months. I heard "you can't have numbness and be in pain ... you can't have all of those pain symptoms." After several referrals I was finally directed to a group specialist that deals with facial nerve injuries. I had nerve decompression via sagittal split ostomy. No effect (other than great weight loss). I then went through countless pain management clinic, oral surgeons, psychologist, homeopaths ... nothing other that living drugged beyond your wildest dreams and still in pain.

Finally, I was connected with Dr. John Johnson at the Bethesda Medical Center. What a savior. He spent time to review what had been done, tried things that hadn't ... still to no avail but he was the first to make a bonefide excellent effort. After retirement, I was connected with an excellent neurologist. My first visit was nothing more than record turn in ... four large volumes. He then attempted to assist me in every way possible. I have had two providers that I trust implicitly. They have made every attempt to help me. I am blessed with their helped. Today ... no different from every other day ...wake up, cannot see the clock clearly with my right eye because the pain is so bad. Shower (with the pressure of the water beating on my head and face), brush my teeth (wish that I did not have teeth) and set off for work. Navigate the road signs only because I know where I am, vision still not right. Have to drive with my left hand because the right is hurting too badly. Get to work and suffer through the day. I have to meet with clients, sit in meetings and work (system engineer) ... I hate the act that everything is OK, because it is not. I just want to rage or cry, never can decide which one. Then it is back to driving. Get home and spend time with the family. My wife and son have had to adapt to life with pain. They have to modify what they can and cannot do because I am so very limited in what I can do. Then to bed ... unless I am completely spent, I will lay there completely uncomfortable, miserable and unable to get sleep. Then it starts all over again.

Personally I have changed my attitude a great deal since the beginning of this ordeal. I will do more with my family or friends and just endure whatever exacerbation of pain that happens. I attempted to look at things in a positive light. Then I realize how things really are. I have been in constant pain for longer than my 13 year old son has been alive. My body is slow and painfully degrading, both in function and form. Mentally I am challenged ... spend more time thinking about pain than about the rest of life. My neuro believes that I will be completely unemployable before 50 and is shocked when I actually make it for the next appointment. Guess that he expect me to become a statistic. I do not want much ... just one pain-free week with my family so that I can really share in life with them. So that I can better give back all that they have done for me. Do I think about ending it ... yes, just about everyday. I do not feel sorry for me but those that have to deal with me. My wife and son are a godsend and I am the handicapped burden. What is my plan? I do not know. Still love my family, work with my neuro and ....we'll see. If that day does come that I have to go, it will not be sad. I will be pain free.

Name: Sharlene
Email: Private
City: Auckland
State:
Country: New Zealand, Geniculate Neuralgia, odontalgia
Treatments: Tramal(pethidine based tablets) & antidepressent/muscle relaxant
Comments:
Date: 10/16/06

To this day 10 years later I dont think I have ever experienced such a painful lonely time as the year before I was diagnosed with trigeminal & geniculate neuralgia and odontalgia. I was born with less than perfect teeth & after having a nightmare childhood dental experience I would sedatives just to get myself in the door. I have one dentist who knows my history and knows how to treat me...but on this one day he was away, I had no choice as I required an immediate root canal. I was treated by a lady who was filling in & I dont know what she did but that moment changed my life. I went home after the treatment & waited for the pain to subside...it didnt, by that night I was overcome with a extreme pain in my jaw, ear & a headache down the right side of my head. (My head would get so sore, you couldnt even touch the skin or brush my hair) By midnight I was at the after hours doctor getting pain relief. The next day I was back at the dentist so he could check for any errors or abcess's...nothing. By that night I was in pain again, it would start with dull ache on my top jawline line and progress to a headache down the right side of my face and earache which felt like someone poking a hot stick down my ear. These pains would come and go, I'd be fine for hours and then with no reason I'd start to feel them come on. I gave up my job because it would strike me down at work. I was making 4-6 trips to the doctor a week either during or after office hours. He prescribed me everything that he could think of that would give me relief. I used to spend hours crying & rocking myself in my bed, I would be in pain for up 6 hours at a time. He prescribed Morphine after about the first 3 months, I remember thinking that I may have finally found something to relieve the pain...it didn't it made me violently ill & I couldn't keep them down. I had a MRI, a CATSCAN, I've been to EAR,NOSE & THROAT surgeons, all to try & find the cause & hopefully a cure. Six months into it I took an overdose of painkillers, I wasnt trying to hurt myself just stop the pain. All I can remember is still being in pain & getting up to go the toilet and falling down 26 wooden stairs.I started to think I was imagining the pain & thats why no-one knew what was wrong. My doctor then put me on pethidine injections, finally relief,it was like a angel had finally heard me. I could curl up in a ball & sleep, my wonderful doctor limited my painkillers to stop me getting addicted but also helped to manage my pain. But still 8 months into that year no-one still knew what was wrong. One evening I went to an after hours doctor who asked me if anyone had ever discussed 'Neuralgia' with me...I was amazed as he explained the pain areas, the type of pain, everything, it all fitted, after 9 months of pain I finally had an answer at midnight in an after hrs surgery!...the next day we took our info to my regular GP who agreed it was a fitting possibility..altough he thought it was a more common disease with the elderly. He put me on Tramal(pethidine tablets) and a muscle relaxant/antidepressent and I'm happy to say within 3-4 weeks I was almost painfree & when I did have an attack I could manage the pain & the amount of time I was in pain for. I have a attack at least once a year now but as soon as I feel the symptoms coming on I can take my pills and within 24 hrs be well on the way to recovery. I took another year off after being diagnosed to recover both mentally & physically as I lost alot of weight, had lost muscle due to being basically bedridden & just needed time to realize that it was over & it was REAL! Now 10 years later I look back at that time as a living nightmare, and have come across 3 people suffering the same symptoms who have since been diagnosed as Neuralgia Sufferer's. It seems to be one of those disease's thats the last on the list for doctors to consider when their patients present the matching symptoms. It was a long painful experience that I wouldn't wish on anyone but I hope with telling this story it may help others looking for an answer & finding it quicker than I did.........

Name: Hilda
Email: hbdavis@ec.rr.com
City: Jacksonville
State: NC
Country: United States
Diagnosis:  Atypical Facial Pain
Treatments: Neurontin
Comments:
Date: 10/16/06

I am suffering with excruciating pain in the right side of my face and can not chew with out it hurtiing so bad that I can not stand it. Has anyone found anything to relieve this kind of pain? If so I would appreciate hearing from you. Thanks, Hilda

Name: colen
Email: colenmann@yahoo.com
City: bostic
State: NC
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: MICROVASCULAR DECOMPRESSION & GAMMA KNIFE
Comments: PAIN FREE
Date: 10/15/06

10/15/06 This is a follow up to the article I posted 06/22/02 which I pasted below I had The gamma knife surgery done on my left side & I am now pain free. It was about two years ago. Than GOD. Here is a link you might want to look at http://www.tna-support.org/ Name: Colen Email: colenmann@yahoo.com\ City: Bostic State: NC Country: United States Diagnosis: Trigeminal Neuralgia Treatments: tegretol radio surgery & decompression Comments: pain free on right side have it on left side Date: 06/22/02 I came up on this web site while searching for anything I could find on trigeminal neuralgia. I will try to tell you to the best of my memory about my experience with trigeminal neuralgia. The dates I will tell about are only approximate. It started with a slight twitch on the right side of my face , then I had what I thought was a toothache. I ended up having 4 teeth pulled, two teeth by one dentist the other two by another dentist, before the last tooth was pulled the dentist told me he thought my problem was trigeminal neuralgia. I will not give all the details. I was given tegretol , but the side effects from it was more than I wanted to deal with. I had the radio surgery deal, but the pain came back later when I had a vehicle accident. I had the decompression deal, and I was pain free on the right side & I am pain free still on my right side . The year was somewhere around 1979. Approximately eight years later the pain started in my left side. I have had pain that comes and goes ever since then. It feels like electricity shocking you in the face. Talk about trigger spots as of right now being the 19th day of June 2002 there's one on my eye , my nose, inside my nostril on my upper lip & under my upper lip,all this is on my left side. The things I want to say now probably very few people will agree with. I thank God for what this pain has done for me it has definitely made a better person out of me. I am not saying that I would not love to get rid of this pain. Only God and people who have had this pain can know how bad it is. Thank God for helping me keep my sanity thru this. <colenmann@yahoo.com>

Name: carolyn
Email: carolyn@kilbourn.net
City: tucson
State: az
Country: usa
Diagnosis:  Atypical TN, Atypical Facial Pain
Other: trigeminal neuropathic neuralgia
Treatments: surgery, various meds
Comments:
Date: 10/10/06

My story began in 1989 when I was in my 20's full of courage and hope. I believed the orthodontist and oral maxillofacial surgeon that a complicated treatment of orthodontics and surgery was needed for developmental abnormalities in my palate and jaw. The surgeon misjudged the gap to allow a bony fusion and the surgical seam to attach my palate to the supporting facial bones never healed. I knew the second that my jaws were unwired that there was a severe problem. I was told that there should be no pain. I was in agony. I spent the next few days screaming and crying into a pillow so that my 3 year old would not hear me. I called the surgeon several times and was firmly dismissed. Over the years that followed I would periodically try to consult with various dentists, oral surgeons, neurologists, and yes, therapists. My husband was in the military so every few years I would have access to new health professionals. I was listened to, examined and usually dismissed with "I don't know what is wrong with you." I would feel so discouraged but pull myself together and bravely push on. By the late 90's, the damage was becoming noticeable to others. My face was changing. My upper teeth and palate were slowly rising up into my nasal sinuses. You could see my upper palate move freely in my mouth. The pain was unbearable but I had no choice but to bear it. I continued to work, raise my child I chose not to have more children because of this. It indeed has affected my life profoundly.), try to be a good wife and housekeeper. I finally went to a pain specialist. He quickly had me on multiple drugs. For the next year or so I continued to take these meds for pain, anxiety, muscle relaxation, and depression until my condition worsened to the point that surgery was my only option. I desperately did not want to redo that surgery. The oral maxillofacial surgeon that did the surgery was quite skeptical when I first consulted with him. He had never heard of such a poor outcome from my previous surgery. He believed me after he viewed the x-rays. He especially believed me when he performed the surgery and saw the damage inside my face. All the hardware and screws were bent and had moved through my face damaging joints, tissue and nerves. My palate had risen into my sinuses and destroyed the integrity of those structures. I had to have my temporal mandible joints replaced, bone transplanted from my hip along with metal plates to rebuild the palate and sinus areas. The surgeon did a fantastic job patching my face back together. Everything is stabilized and functional. The only thing he could not fix was the extreme trauma to the facial nerves. I soon found that after the corrective surgery that my pain level actually increased even though mentally I tried to convince myself that I was better and on the road to recovery. I continued to try to work, parent, be a wife and housekeeper. I remained on all the meds: pain, anxiety, uscle relaxers, depression... I slowly started falling apart. Within a year or so of the corrective surgery. I had to take a medical leave of absence. That was the beginning of the end of my functional life. I now stay at home unable to work or participate fully in life. I went from being an energetic, involved, dynamic individual to being a pain riddled recluse. My only 2 contacts with the world are my husband and my now, college aged young adult. They both live normal active lives which I encourage. They are quite supportive of me but there is little they can do to change my reality. The real crushing blows were yet to come. Four months ago my dr. decided to take me off my meds. No weaning, no explanation except that the meds are not controlling the pain so we are stopping them. I had been taking strong opiate medication for several years. Even though I never abused my meds, I still went through a difficult cold turkey withdrawal period. Withdrawing from benzodiazepines, opiates, muscle relaxers, and depression meds. During this time I also had to have two abdominal procedures: gall bladder removal and ERCP. Somehow after this I managed to get costochrondritis (painful inflammation of the rib cartilage). I am in so much pain that my mind swims with it. Due to the pain and side effects from drug withdrawal, I also found that I can no longer sleep. Sleep comes in 15 to 45 minutes increments, usually no more than 11/2 hours total in 24 hour period. In 4 months I have not slept more than 14 hours a week...sleep deprivation, constant severe pain, and no relief in sight. I have tried to consult with my doctors. My PCP treats my blood disorder, acknowledges and treats my depression...but ignores my complaints of pain, panic, anxiety and sleep deprivation. He does not want to deal with that as there is no resolution forthcoming. I feel that I struggled and fought. I have had the fortitude to undergo all the interventions, surgeries, multiple dr. appts with multiple specialties: ENT, neurology, oral surgery, etc. but because it can not be fixed...treatment was discontinued. The past 4 months have brought me to a place I never intended to be, ...depressed, hopeless, suicidal, isolated, negative and lonely beyond description. I have learned to stop trying to communicate with others as I have watched loyal friends of up to 20 years fall away over last 4 months. No one can bear to be around me as I am in so much pain and mental agony. My husband and child stay by me but I know it will be a relief for them when I am gone. I, the strong caretaker, supervisor, leader have fallen. I am now a burden. I spend my days doing menial household tasks that I force myself to complete. I can only watch TV, work at the computer, or read in 10-15 minute increments. It has taken me hours to type this story. I graduated from college with honors in 3 1/2 years. Every job that I have had I was quickly promoted to supervisory positions. I volunteered in the public schools for years as my child was growing up. I was a real person with energy, drive, hopes and dreams. I was a partner to my husband socially, financially, and a fun loving wife. I am now a tortured soul living in a broken body...trapped. The pain has won. I do not know where else to go for help. Financially we are so strapped as I have not worked for 2 years. I applied for disability but have waited 2 years and still have not received a hearing date. I can barely make it through the day at home and lack the physical, mental and emotional stability to work at outside employment. I feel useless. Has anyone else suffered a medically or surgically triggered atypical facial pain syndrome and not been able to find any help? If I can get disability I will try to find new doctors...I do not know if anyone will care.

Name: Paul
Email: augustuslegion@gmail.com
City: Rensselaer
State: IN
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Carbamazepine
Comments:
Date: 10/10/06

Well, about a month ago i started to have pain in my tooth (what i thought the problem was). I could not understand how i could continue eating with this toothache that would come and go. Needless to say, there was an infection in the tooth, that i got under control..except it triggered TRIGEMINAL NEURALGIA. This pain starts off below my tooth and hurts like crazy..then it felt like electric shock and spasms shooting all over my left side of my face, ear, head, below my eye and throat. Never felt such pain in my life, seriously. Well, when it got too much to take, i went to the doctor and he said he thought i had Trigeminal Neuralgia and has started me on the medicine. My first two tablets seemed to hurt me, especially my ear and they made me very dizzy. I had my third tablet this morning and have had the pain in my tooth, but it doesn't seem to be moving into my face, i feel pressure in my face , but not too much pain..so, so far SO GOOD. I would advice anyone with pain in their face to see your doctor asap. The pain, is just not worth it..and you are one of the lucky ones of the medicine works.

Name: violet
Email: private
City: toronto
State: on
Country: canada
Diagnosis: Trigeminal Neuralgia
Treatments: carbamazepine-tegretol -xr and a lots of advil!!!!!!!
Comments:
Date: 10/05/06

i feel so helpless,my husband has this terrible disorder for more than 10 years.usually he takes tegretol for certain period of time;3-4 weeks,and the pain disapear for a year or two,and all of a sudden starts again for (apparently) no reason.i don't know what to do and how to help him.during this period he takes advil ,sometimes more than 8 a day ,which is scare me thank you,VIOLET

Name: ken
Email: gmontgomery@cts.canon.com
City: Abington
State: PA
Country: USA
Diagnosis:  Trigeminal Neuralgia
Treatments:
Comments:
Date: 10/03/06

Summary April 24th 2006- Visted Dublin Woods Dentistry (Dr. Robert Brett, DDS / Dr. Karin Rosensweig, DMD – 1390 Fitzwatertown Road, Roslyn, PA 19001 Main Complaint – Saw Dr. Rosensweig about tooth #31 Throbbing pain for about 3 days. Tapped on the tooth – took an x-ray. Did not see much on the x-ray so they opened up the tooth saw a light absess and started Root Canal. Before root canal – was given 5 shots of novacain and none of them took effect – so the root canal was done live. Perscribed –Amoxicillan and Vicoden April 27th -2006 – Tooth still in pain – Dr. Rosensweig reopened tooth – filed it more – shot with all kinds of chemicals April 28th – 2006 – Tooth still in pain - - Dr. Brett examined tooth Reopened – irrigated May 8th , 2006 – Tooth still in Pain – referred to Dr. Steven Zicchinolfi May 11th 2006 – Dr, Zicchinolfi – Reopen and did Root Canal again Perscribed Steriods and AntiBiotics May 13th – 2006 – Called Dr. Z and Dr. Brett – Still in pain Pain radiating in the back of the head – constant headache May 23rd – 2006- Dr. Brett pulled Tooth #31 May 26th 2006- Called Dr. Brett – Still have radiating Pain along right side – and back of head May 28th 2006 – Back into Dr. Bretts office – Checked for Dry Socket – none Now the tooth next door #30 painful – Dr. examined that tooth and accessed the tooth – initiated root canal – not complete. Left tooth in occlusion. May 31st 2006 – Right side still in pain – Visited Gary Jones for a second opinion Dr Jones examined , took x-rays and recommended that root canal needed to be redone June 2nd 2006 – Visit with Dr. Zicchinolfi – He X-rayed and Root completed the root canal on #30 - Perscribed Steroid and Penncillian June 5th – 2006 – Dr. Brett’s Office called for update – told them no good - June 14th, 2006 – Could not stand the pain – thought had infection went to Abington Hospital Emergency Room – They tested blood for infection – all ok Perscibed 800mg iboprpfren and said to say pain management – Called to make appt with AHS pain mgmt and they said it was a dental issue and to return to the dentist June 29th – 2006 – Dr. Brett – Recommend that we see Dr. Michael Dachowski He did a full facial x-ray and oral exam – Perscribed – Dexamethasme & Clindamycin July 12, 2006 – returned to Dr. Michael Dachowski – still in pain Referrred to Neurologist July 17th 2006 – Visited Dr. Wegman – Abington Neurology After his consultation – he said it’s a dental problem and go back to the dentist July 18th 2006 – Visited Dr. Mary Tobkin Dr. Tobkin sent us for a Cat Scan to rule out Sinus infection – Cat Scan Normal Also scheduled MRi of the C-Spine on 8/1/06 July 24th 2006 – Had Cat Scan C-Spine to rule out sinus infection -– All Normal (See attatched report) July 27th, 2006 – Visited Dr. David Wedell – Wanted to pull #30 tooth to see if we could get any results to rule out tooth and if that did not work – then recommend to return to another Neurologist. – Did not want to lose another tooth yet and until we have a firm diagnosis. August 15, 2006 - MRI Cervial Neck done– All Normal (See attatched report) B-12 Blood Work done – Normal August 25, 2006 – Dr . Davidf Wedell pulled tooth #30 August 28, 2006 – NO CHANGE IN SYMPTOMS AFTER TOOTH PULLED Symptoms have actually gotten worse!!!! We have an appointment with Neuroligist - Dr. Dooneief on Sept 18th, 2006 September 18th 2006- Dr. Dooneief did full Neurological Exam. He thinks all symptoms pointing to TRIGEMINAL NEURALGIA. September 27th, 2006 – Kenny had EMG for hand numbness – All Normal September 28th, 2006 – Kenny had MRI of Brain w/ and w/o contrast – All Normal Ken Symptoms as of 10/3/06 - 1. The Pain starts in the lower jaw and the pain shoot around the right ear to the right eye. 2. Hears Jaw Clicks on right sides when opening and shuting mouth – not consistently to be TMJ. 3. Constant Right Ear Pressure 4. #30 Tooth was stilll senitive to cold and to touch ( do not understand how this can be if tooth was root canaled and confirmed dead) 5. Both Hands are contantly tingling every day for the last month (ITS NOT ANXIETY) Sometimes the tingling radiated down his arms to his hands. IS IT TMJ? (Dr Bretts Comments- “Possible but pain seems to be to acute for this alone” IS IT ATYPICAL FACIAL PAIN ? IS IT TRIGEMINAL NEURALGIA? Dr Brett’s Comments “Possible – Is there a place the triggers Kens Pain on his face?” IS IT LINGUAL NERVE INJURY? Dr Bretts Comments “No numbness in tongue – not probable for lingual nerve, but some injury possible” ALL WE WANT IS SOMEONE TO HELP KENNY’S PAIN !!!!

Name: Jessica
Email: JesseS917@aol.com
City: Albuquerque
State: NM
Country:
Diagnosis:  Trigeminal Neuralgia
Other: Hemi-facial Spasms
Treatments: MVD surgery, medication when needed, botox injections
Comments: Always hold on to hope... never give up.. and ask millions of questions!
Date: 10/02/06

I was diagnosed with Trigeminal Neuralgia when I was 17 years old. After having four wisdom teeth removed, I woke up to a nightmare I never thought would be my life. For four years I struggled.. I went to numerous doctors and took many different kinds of drugs(neurontin, trileptol, tegretol, baclofen, ect). The medication would work but only in extremely high dosages so either I had to live with the pain or live like a zombie from the side effects. School went from great to okay to having to take a year off because I couldn't finish a semester. The depression got so bad that I attempted suicide, obviously and thankfully not succeeding. That was when I decided to have the big, scary brain surgery. I went to Arizona's Mayo Clinic in April and got MVD surgery done. It worked... I went from having pain daily to only having pain three times in the last four months. I'm going to school now and I couldn't be happier. If anyone is considering this surgery I suggest you really think about it. I wish I would have done it years ago. Also, if anyone wants information about the surgery, the Mayo clinic or how the get your insurance to cover the surgery, feel free to email me.

Name: "Denise"
Email: private
City: Turlock
State: CA
Country: USA
email_private: Yes
Diagnosis: Atypical Facial Pain
Treatments: Nothing that has helped
Comments:
Date: 09/29/06

Hi! I am so glad to find this website. I have spent yet another night and day in horrid facial pain and if this same chronic pain were someplace else in my body, such as in my arm, I gladly would have cut it off today. This first started in 1988 when I thought I had a toothache (left side of face). The dentist examined my teeth, found nothing, and prescribed diphenhydramine, thinking that maybe an antihistamine would help. I took that for awhile, but my pain was not too bad and was intermittent and the medicine did not seem to help either way, so I stopped. Fast forward to the early 1990's. The pain is getting worse and more often. During that time I caught my right hand in a lawn mower, had to have revision amputation done on two of my fingers, with several reconstructive surgeries that year (while putting myself through school, raising my son, and working). I also had cataract surgery done in one eye (I was told that it was very rare for someone my age to have such an advanced cataract in only one eye), and I have had two children via natural childbirth. None of these situations have resulted in the kind of pain I have suffered from my facial pain. I am saying this because I am not a 'ninny'. I have toughed out all kinds of pain in my life. However, this chronic facial pain is wearing me down fast. You just can't get away from it. I have had root canals done, been to a neurologist (tested me and said my nerve was fine and that I didn't have symptoms of trigeminal n.; he was rather perplexed, sent me home with some samples of Tegretol which he said might help, he just didn't know. It didn't help. I myself believe I don't have tri. n. I have had various CT scans, have been to two ENT's, have had sinus surgery done, have been on antibiotics for over a year for *maybe* recurring sinus infections -- I had to stop that because the constant dosing of antibiotics was starting to make me ill. And, they didn't help. I have had steroid nose spray and various prescription sinus meds -- all to no avail. The pain I suffer is daily. Sometimes it's at what I call a number 3 or 4, and I just try to distract myself away from it. I am the main breadwinner in my household, am a respected professional in my community, and I can't afford to be disabled by this because my husband suffered a heart attack last year and I need to keep working to pay the bills and keep our health insurance. Even if I were to lose my job because of it, that would just mean I would be at home suffering. Other days, the pain really breaks through. Sometimes it feels like a 'presence' under my cheekbone, and then it tracks across my face, over to the side of my head, up my head and stops at the center top of my head. I could take a magic marker and draw the line it travels. When it really breaks through and is at a 10 on the scale, it radiates over my entire cheek, to my teeth, and my entire head becomes one major ache. I can't describe the pain as burning or stabbing. When it starts, it feels kind of like I have been punched in the face combined with a constant 'toothache' feel under my cheekbone. It turns on and stays on -- like a stove burner, but it's not a 'fire' type of pain. When it gets to over 10+, it's beyond description. The few times I have been 'allowed' pain medication, it would take me 2 to 3 days to get the pain under control -- like I passed a pain threshold or something. When I finally could get it under control, I could function and go about my day. But, once the pain meds run out (I have only had a few prescriptions over the last 5 years or so), the pain comes screaming back like a banshee. My doctor seems to know how to prescribe for acute pain, but not what to do for chronic pain. My doctor doesn't seem to know what to do, and seems to be avoiding working too hard at trying to treat something that is 'chronic'. I can't blame him for feeling helpless, but on the other hand, that attitude isn't helping me much. I am going to him yet again next week and am hoping he can refer me 'up' to a clinic somewhere where there might be professionals who are better equipped to help me. I don't know what to do anymore. I wish a doctor could just cut into my face and cut something out. Some days I feel like taking a shotgun to the left side of my face. My only other option if a doctor can't cut something out or whatever seems to be to take pain meds every day. I don't like that option either, but at least I would be able to function if I could keep the pain at bay. I need help. This isn't getting any better, my local doctor seems to have run into a brick wall, and I suffer daily. My husband can't stand to see me this way anymore. Other than the pain, I am a vibrant, healthy and intelligent human being who is a human services provider in our community. I am still raising my youngest son. I wish the left side of my face felt like the right side of my face - - pain free. I have read some of the other conditions mentioned on this site and atypical facial pain seems to fit the bill. Although I was in pain while reading the information on the website, I had a glimmer of hope in just being able to perhaps give a name to something that no one else around me seems to understand. I feel I have some credibility. After all, how many times do people want to hear your 'pain story'. If I wasn't in so much pain, I would be bored with it myself. I need help. Thanks for listening.

Name: Samantha
Email:  Private
City: Norris
State: TN
Country: USA
Diagnosis: Glossopharyngeal Neuralgia
Treatments:
Comments: newly diagnosed
Date: 09/29/06

Name: James
Email: pfrehmj2001@yahoo.com
City: Madison
State: WI
Country: United States
Diagnosis: Trigeminal Neuralgia, Atypical Facial Pain
Other: spaciness & anxiety
Treatments: PAROXETINE & CLONAZEPAM
Comments: Has anyone experienced the same symptoms as me?
Date: 09/28/06

Hello every one. I'm 29 years old and have never really had any medical issues until now. I've always worked out on a daily basis, watched what I eat, and kept up a vibrant personal/social life with my wife and friends. About 2 months ago during a stressful work experience in Eastern Germany I suddenly developed this burning, very painful pressure just behind my left ear, which I thought was either a migraine, ear infection, or pinched nerve. And so, in true "macho male" fashion, I decided to ignore it as best as possible and work through it (that is, work out and continue my stressful work schedule). This went on for another 2 weeks until I couldn't take it anymore and just dropped everything to try and relax. But by then, though the pain was not as bad, I started noticing this really annoying sensation of spaciness and extreme pressure in my sinuses and tension in my neck. The spaciness has been so bad that I've lost my appetite and energy level, and I have not even been able to work for 3 weeks. Now I'm down almost 15 lbs and have my whole family and colleagues worried. I've been now to 4 doctors, had a trip to the ER to rule out aneurysms and such, and have been variously diagnosed with migraines, eustachian tube collapse/disorder, ear infection or viurs, and stress/anxiety disorder. The earlier docs threw antihistamines, Imitrex (some sort of anti-migraine drug that boosts my serotonin levels, though I'd rather get a serotonin high from chocolate...=) and nasal steroids like Nasanex at me. But none of these have helped. At the most recent visits to my ENT and PCP, I told them I was still having the extreme pressure in my head and spaciness, especially when I stand up and walk around (I'm really sensitive to lights and sounds, for some reason), and that I have a strange pain in my face, on my cheek next to my nose. It's not a sharp horrible pain, but a dull one that can throb a bit at times and that hurts when I push on it. At any rate, the newest diagnosis for my 2-month ongoing ailment is that I have a problem with my trigeminal nerve, whether it got pinched or injured or attacked by bacteria or a virus. This also has caused the Atypical Facial Pain. Apparently, as they tell me, the trigeminal nerve has been irritated and is the cause of all my symptoms, including the hypersensitivity of my senses, which in turn has sparked anxiety and panic attacks (because I've never had symptoms like this that have lasted this long, I get a little freaked out over them). Anyway, as a result of this last diagnosis (whereby they didn't use the actual term trigemenial neuralgia, but essentially eluded to it), they prescribed me paroxetine (like Paxil, an antidepressant/antianxiety drug) and clonazepam. My question, basically, is whether anyone else out there who has issues with their trigeminal nerve has experienced symptoms like mine? I look forward to hearing from you, and please feel free to email me. James

Name: Scott
Email: educate@etcrier.net
City: Stckton
State: CA
Country: U.S.A.
Diagnosis: Trigeminal Neuralgia, Atypical Facial Pain
Treatments: Multiple Medications
Comments: Extremly discouraged
Date: 09/26/06

About 5 years ago an ENT Doctor in the VA did a biopsy on the center of my lower loop looking for schrogens disease. The results were negative but soon after I developed a horrible pain in the center of my lip that was alsost deabilitating. I returned several times to the VA looking for help but all they gave me was meds, after meds after meds. When non of the medications worked they sent me to mental helath where I was told my pain was caused by my secret hatred for my mother. I moved to california where another VA ENT doctor cut the mental nerve where it comes out of my lower left jaw. This solved the pain in the center of my lip but now I have a pain ten times worse. It is like a hot propane tourch being poined at my lip from left to right. AT first I was told I have trigeminal neralgia but now I am told it is something different. The pain is almost moe than I can bear. I understand why it is referred to as the suicidal disease. It I were to have a cranial operation with the the risk of death if id did not work I would take the risk as death asit would be better then living with this pain the rest of my life. If there is anyone out there who can send me in the right direction for relief I would be eternally gratefull.

Name: Rayna C
Email: raynacook@yahoo.com
City: Fairplay
State: MD
Country: USA
Diagnosis:  Trigeminal Neuralgia
Treatments: Medications
Comments:
Date: 09/26/06

My name's Rayna, I'm 34 years old and have very recently been diagnosed with Trigeminal Neuralgia. I am in constant pain and if it weren't for the love of my husband and my 3 teenagers I would have already ended my life. The pain I experience on a daily basis is completely unbearable. I had some tooth pain in 2004 and was told I needed a root canal on tooth # 29 bottom right jaw area, and started to have it done. My dentist, who is ancient, didn't explain the procedure and didn't tell me that I needed to have it completed in any amount of time. I had pain on and off in my teeth and jaw area, and finally in june of 2006 decided to have the root canal finished because the pain was worsening. The dentist said I had an infection, that was why I had pain. I was on antibiotics for 2 weeks. I still had pain. He put the temp. root canal material in and I had more pain. One week later I went back, and he did the "real" root canal. After the root canal I was in so much pain I wanted to die. I thought maybe this was normal. The next morning, I still wanted to die from the pain, I called the office. They wanted to see me. The dentist who did the root canal wasn't there so I saw his associate, he said he would not have even tried to do a root canal on this tooth and told me I should not be in this much pain and shot me full of novacaine again to relieve my pain, which caused excruiating more pain and said I should see an endodontist who could maybe re-do the root canal. I was mortified. And I was in so much pain I didn't know what to do. This was a Friday. On Monday I decided I was going to have that tooth pulled out. That having the tooth pulled would solve the problem and I would no longer be in pain, or so I thought. I called an oral surgeon, who got me right in that day, and charged me $535.00 to pull my tooth. And now thinking back, I wonder, gee thanks, I could have kept my tooth, but I guess the money was more important to him, than solving my problem. Anyway during the extraction, the pain of having the tooth pulled was tremendous, awful if anything and I just couldn't believe it. I was begining to think I was nuts. I went home. I cried. I was STILL in terrible pain. 2 days later, the pain was not letting up, it was worse, if you can imagine that. I called the oral surgeon, I thought maybe I had dry socket (a friend told me that might be the problem at this point). I went to back to see him 4 days after he extracted my tooth. I did not have dry socket, he said, "everything looks great", "you should not be in that much pain, you must have a low pain tolerance". I left his office crying hysterically, and felt like I'd been hit in the gut. By this time, my mouth hurt so bad, I couldn't open or close my mouth the entire way, because of the jaw pain, the teeth on the right bottom of my mouth all hurt, the right side of my tongue, my lip on right bottom and cheek hurt and burned, I was having strange burning sensations and pain in my ear that felt a screw driver being stuck in my ear. I went to my family doctor. He said you have nerve damage in your face. I cried. He said theres not alot to do about it. I started my own research. I called him back 2 weeks later and reqested to see a specialist. ( I have NO health insurance). I went to see a doc at the University of MD Med System in Baltimore. He did nerve blocks in my mouth to "map" out where the nerve damage was coming from. The first in the front of my mouth, that was bad enough and didn't end the pain and only made the pressure worsen and the pain in my lip worse, but then he did the block in the back of my mouth at the jaw area, and OH MY GOD!!!,,,,I FELT LIKE I WAS LITERALLY BEING ELECTROCUTED. I had been having these sensations but not on the level that nerve block created. That was so intense that I sobbed and heaved and bawled for a good 5 minutes without being able to talk. The doc diagnosed me with having Trigeminal Neuralgia and said it was coincidental that I had the dental work done and the TN happened. I don't blame the dentists. I only blame them for not recogonizing the signs of the nerve damage. I am going to have an MRI done tomorrow to rule out MS, as I have a family history of this. I am so glad there is a network of TN related people to lean on, because this is one hellofa thing to go through. This is my personal hell and is like prison. I pray everyday that the pain will stop or subside. I hope everyone lives well.

Name: Deanne
Email:
City:
State:
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments:
Comments:
Date: 09/11/06

hello everybody. I just turned 41. I am in overall good health. About a year ago right before i turned 40 I went to a dentist after having severe pain in my right side of face travelling to the right lower gum, I thought I needed a root canal and went first thing in the morning to the dentist. She did a thorough check and said my teeth and gums are fine, the pain is not tooth or cavity related, she suggested I go to a neurologist. I put it off because the pain didnt happen again for severla months and i thought it was a one time event. However recently it began occuring about once every week or so, not always severe, sometimes disabling I almost went to the emergency room late at night. I have not been diagnosed yet, I have put it off long enough, and should probably get myself to the doctor, but from reading it sounds like it may be trigemincal neuralgia. It's alwasy on the right side of my head and face, it typically begins with a few twinges or I just dont feel quite right, then within a few hours or less some pain starts on the right side, mostly it seems to affect the lower right jaw and gumline, i get sometimes a very painful shock like feeling in that area.

Name: Rebecca
Email: rebeccaannsmail@comcast.net
City: Grand Prairie
State: Dallas
Country:
Diagnosis: Trigeminal Neuralgia
Treatments: Prayer
Comments: I was healed by the Great Physician
Date: 09/08/06

I did not even know what Neuralgia was. I don't guess I had ever heard of the word in my life and I am 63 years old. I have never been in so much pain in my life. It was on the left side of my face. At first I thought it might be a tooth. I was in so much pain and I could not get into a denist on a Saturday so I went to a clinic where my primary care doctor told me to go. Who said it was my tooth gave me an antibiotic and told me to go to the dentist. I went to the destist and had a tooth pulled of course it was nto the tooth. I then went to my primary care doctor who said it could be TMJ or a stopped up Salivary Gland. I tried a night guard and sucking on lemon drops. No help so I went to a ear,nose and throat doctor. This doctor worked out of Baylor in Dallas. He said it was Acid Reflux so he put me on Prevacid. After a period of time taking the Prevacid and still in great pain I called him back and that's when he said you have Neuralgia and sent me out some medication that had a terrable side effect which said it could couse you to kill yourself if you took it. I would not take it I guess I had to choose between the pain or killing myself wheich the pain alone could cause you to do that. I did not need the medication to cause me to do that. I told the doctor that I don't think it is the side effect of the medication but the pain that would cause a person to do that. I then went to an Oral Surgan and Dentist that my cousin had used and was suppose to be very good. I was having so much pain in the left side of my face that I stared feeling like if I could just get one tooth pulled on that side I would be o.k. I just wanted to go into this doctor and tell him that I thought it was my tooth on that side the lower one. I called my daughter at work and told her she said just hope and pray that it is just your tooth and it will be over. When I got to the doctor they took more X-Rays of my teeth all the inside of my mouth and face. I then went into a room to wait for the doctor. He came in and looked at my X-Rays and showed them to me. He said it is not your tooth or any of your teeth it's Neuralgia. I was so down and I asked him what I could do for it and he said you will have to take the medication the doctor told you to take that is all that can be done for Neuralgia. I left the doctors office very down and I called my daughter and told her she was upset of course. We were both hoping it was just a tooth. I am a christian and I had been praying all through this from the first believing God even in all the pain and what I was going through. I just knew that God was going to heal me I just did not know how or when. I believe God uses doctors I believe He also uses medication. I also believe He heals in spite of doctors and medication. I had been reading a wonderful little gook by Dodie Osteen called Healed of Cancer which has wonderful healing scriptures in it. This is the late John Osteen's wife.God healed her of cancer in 1981 she is still in great health today. It will build up your faith to receive yur healing. You can get this book by writing Lakewood Church P.P.Box 23297 Houston,Texas 77228-3297 or your local christian book store might have it it's about 4.00 or 5.00 dollars. So I was praying and claiming these healing scriptures for myself. I kept believing God even with all the pain. I kept holding on to God for my healing. Now as I was coming back from this last doctor. I was just so down when I got half-way home I started hearing this beautiful voice like an angel singing in my head just like a radio was turned on and I know it was in my spirit. The song just kept playing over and over in my head. The song was from the Bible. I was He was wounded for my transgressions,He was bruised for my iniquities surely He bore my sorrows and by His stripes I am healed. This just kept going over and over when I was almost home I strated singing it even though I did not feel like singing it I sung it three times. The next day I was better and the next day no pain. I could eat and drink without pain. All pain was gone Praise the Lord !!!! I also claim the scripture in Nahum 1:9 which says the affliction will not rise up the second time. It will never come on my body again in Jesus name it won't.When I read the cries of all the people on this web site even in all my pain my heart just went out to all you. I even told the Lord if you will heal me of this I will share my tesitmony and He did and I am doing what I told Him I would do. God hears your cries also and He is no respecter of persons Acts 10:34 what He did for me He will do for you. All you have to do is have faith and believe God for your healing. Jesus was moved with compassion as He went about healing. He is moved with compassion today. Hebrews 13:8 says Jesus is the same yesterday,today and forever. He is still moved with compassion and He still heals. It does say in Matthew 14:36 that healing is the childrens bread. So if you are not a christian ask Jesus to forgive your sins (we all sin and come short of the Glory of God each day the Bible says so.) And ask Jesus into your heart and ask Him to heal you and He will. God wants you in health. I also prayed in Exidus 23:25 says He will bless yoyr bread and yorr water and take sickness away from the mist of you. I prayed this every time I went to eat or drink because I was in so much pain I could not eat or drink without pain.IPeter 2:24 says by whose stripes you were healed. Jesus took the stripew on His back to pay for your healing. Claim it and receive it. My daughter said when I called her back at work and told her it was not my tooth that she went to the bathroom and asked God why could it just not have been her tooth Lord and He said to her if it had been her tooth she would not have a tesitmony. JESUS IS THE ANSWER THE CURE FOR NEURALGIA AND ALL YOUR SICKNESS. I FOUND THE ANSWER I FOUND THE CURE IT'T JESUS. PRAISE THE LORD !!!!!!!

Name: Joy
Email: jtowson@comcast.net
City: Clinton
State: MD
Country: USA
Diagnosis: Trigeminal Neuralgia, Atypical TN, Occipital Neuralgia
Treatments: Currently on Wellbutrin and nerve blocks
Comments: Why do I suffer with both
Date: 08/26/06

I have had a right side head and upper neck ache (often accompanied by a swollen right eye and face and pain behind my eye) 24 hours a day since January 2003. It took nearly 30 doctors of various specialties until I found out what the problem was. Many of the doctors ended up with a glazed look in their eyes and then I heard the words I DON'T KNOW WHAT IS WRONG WITH YOU, GO TO ... Finally after a 8 month respite from doctors, I was speaking to a friend, who is a surgical tech, about my problems and he told me about a doctor that he worked for at Georgetown University who is Chief of Periphial Nerve Surgery. I went to see him and he listened to my story in its entirety and then he examined me then he said I had Atypical Trigeminal and Occipital Neuralgia on the right side. He has a revolutionary nerve decompression surgery but since I would have to have 2 surgeries he said that I could see Dr. Haidah Sabet in Alexandria that she would treat me until I was ready for surgery. We went through a number of drugs Lyrica, Cymbalta among others then we started with 4 nerve blocks (her limit) in the occipital nerve I am now on a course of nerve blocks in the trigeminal nerve and I am on Wellbutrin 300mg everyday. My pain is still there but it has become more managable on most days. However I am not able to bend down with my head below my heart, it causes me to have sharp and lasting pain in the trigeminal nerve. I am getting married in November but after that I will probably have the surgery so I can stop the pain.

Name: Penny
Email: penny_levine@hotmail.com
City: New york
State: ny
Diagnosis:  Atypical Facial Pain
Treatments: Drugs
Comments:
Date: 08/19/06

On April 28,2006 I had my first root canal in toot number 19. Right afterwards the pain was severe. I went to an oral surgeon and had the toot extracted. I then continued to have pain in toot number 20. I trusted the endodontist when they found that this tooth needed a root canal as well. I went through the same exact thing. This root canal caused the same reaction. I trusted a specialist that said to go ahead and get this tooth extracted to see if the pain would go away. After I had this tooth extracted, the pain went from just the tooth area to my jaw and mouth. I am a 29 year old female that has had no prior root canals or issues with any of my teeth. It's four months later. I've had two icats, a catscan. And not basically this pain is just atypical facial pain. Basically I still can't get over the fact that I'm missing two teeth.. but still am living with severe pain. I was hit by a car 4 years ago and had RSD in my left foot. I was very nervous about getting a root canal, and feel like that no doctors to can tell me to this day what went wrong with the root canal, and what is the future going to bring. I am or was a active 29 year old single girl. It's been very hard to go on everyday and try to live a normal life.

Name: Meredith
Email: NannyMermaid@aol.com
City: Steubenville
State: OH
Country: USA
Diagnosis:  Trigeminal Neuralgia
Other: Arnold Chiari Malformation
Treatments: Tegretol
Comments: There's nothing good about any of this!
Date: 08/13/06

Hello..My name is Meredith. I am 25 years old and have had TN since I was 13. I first started noticing the attacks when I would leave an air conditioned classroom in school and walk into the hot hallway. I have probably 300 minor attacks a day..lasting under 15 secs with no pain just ants crawling on my face and some electric vibes. I do however get some real doozy's now and again each day ...they get my right eye watering, my right side of mouth drooling and I can't see right...they last up to 30 seconds and its the worst pain in the history of the world! I also have Arnold Chiari Malformation. I really have a couple questions. I am getting married in May and we want to start a family. I am scared to death to be on any drug, especially this harmful one while preganat...so I will not take anything..I was wondering if anybody has gone thru pregnancy with TN. And did it worsen? Thank YOU

Name: Byron
Email: samuel2009@aol.com
City: memphis
State: tn
Country: usa
Diagnosis:  Occipital Neuralgia
Treatments: non yet
Comments: sucks...
Date: 08/10/06

Got sick during football season of last year with constant headache, neck pain due to spasms, TP's, and inflammation. Also had constant nausea, dizziness, fatigue, sleep disorder, and more... Have not gotten diagnosed with it yet but I am very optimistic that this is it... hopefully I can get over it if I can, you think I can completely heal from it?

Name: Gina
Email: ginahight@sbcglobal.net
City: nacogdoches
State: tx
Country: usa
Diagnosis:  Trigeminal Neuralgia
Treatments: medications,shots
Comments:
Date: 08/10/06

About a year ago I went to the dentist with pain in my wisdom tooth..The minute the dentist put the needle in my mouth to numb it I knew right then and there we had trouble..He claimed it would be ok but here I am a year later suffering from TN. About a month after that experiance I went back to the dentist and he kept feeding me pain pills and said he thougth I had Trigeminal neuralgia, and sent me to my family Dr. He confirmed what the dentist said about having TN. I was on neranton,tegratol,celebrax,and a couple of steroids..not one of them helped me at all..Then he put me on Lyrica and that seemed to slow my attacks down to maybe 4-5 a week and with the pain meds I really thougth I had hope, But after being on 600 mg of Lyrica a day I couldnt function with 3 small children. My husband as well as myself lost our jobs due to this horrible pain that I encounter, Therefore we lost our medical insurance too, needless to say these medications are expensive, but by the grace of God I have found an amazing Dr. through it all and he has found a pain management specialist that would start those shots that go into my neck and down to my C-7 vertabree and block the nerves about 600.00 pershot! I had my first one about a week ago and I feel no difference, still getting the attacks as often as I was...I have to get these shots every 2 weeks until 5 are completed..The pain management Dr. has told me that this is one of the hardest things to treat and there is never a 100% gaurentee on anything especially the major surgery..He said there were more risks then benifits from that surgery. I thank you for letting me tell my story...It is a very lonesome disease unless your talking to someone who knows the pain your in...I hope I can keep u updated after my other shots are complete. Please feel free to email me I am always happy to talk to someone who know what Im going through. My God Bless all that have this pain and your all in my thoughts and prayers!..thanks...gina

Name: Dying Mom
Email: Private
City: Denver
State: CO
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments: Gamma Ray, Various Medicine
Comments: Is it true nothing can be done?
Date: 08/03/06

This story is about my mom who is 84 and has had gamma ray and various medicines which did not work for her. She now claims there is nothing in the world that can be done for her and she can't eat or talk without excruciating pain. She weights less than 85 pounds (normal weight was about 125), is depressed and has thoughts of suicide. She refuses to see doctors and is slowly starving herself to death. Her husband (not my biological father) also believes there is no hope. She is living in an unhealthy environment and refuses my help. I had a family welfare policy officer almost knock down their door so I could see her since she refused to see me. The policy officer said it was a family matter and that was all they could do which was to have a paramedic check her and ask them if I could see her. The reason she gave for refusing to see me was that she did not want me to see her without her teeth since she can no longer wear them. Her husband will do anything she asks and is not properly taking care of her. Can anyone help me?

Name: Barbara
Email: private
City: Ottawa
State: ON
Country: Canada
Diagnosis:Trigeminal Neuralgia
Treatments: surgery, Tegretol, magnesium
Comments: This is my husband's story.
Date: 07/27/06

My husband has suffered from trigeminal neuralgia for many years. He has had surgery five times with varying degrees of success, most recently two years ago, after which the pain recurred almost immediately. He also tried acupuncture and craniosacral therapy with little or no effect. He returned to taking Tegretol 3 times a day but the attacks continued, becoming increasingly frequent to the point he was considering asking for more surgery, this time to cut the trigeminal nerve. Since the previous surgery left him with major short-term memory impairment, I urged him to try alternatives first. After some reading on the Internet, I came up with magnesium. Within two days of starting on it - 500 mg of magnesium oxide, divided into 250 in the morning and 250 in the evening - he had no more attacks. It has been a couple of months now and he is incredulous at being pain-free. He still takes one Tegretol in the morning "just in case" but is ready to try going with out that too. We are so happy that the magnesium is working!

NName: Debbie
Email: naturegirl032@aol.com
City: Dayton
State: oh
Country: USA
Diagnosis: Atypical TN, Atypical Facial Pain
Other: tmj,facial tendonitis
Treatments: amitytriptyline,nadolol,vicodin,valium,difflucinisal,and anti immflammatory /antibiotic facial injection
Comments: Keep Searching , NEVER GIVE UP!!!!!!!!!!!!!!!
Date: 07/27/06

sorry didnt finish my story so im continuing on from here,,, so i went to dentist and had 2 fillings on top,2 on bottom done. Novacaine wore off and i was in pain.Didnt know which one felt like all 4. Then had root canal done on one with dentist recommendation. Still no improvement in fact had shooting pain thru all different teeth on right side and in right cheek and then pain behind right eyelid and in top of head. Had, mri,cat scan, eye proffesionals , and noone could find anything wrong. This started in sept. 05, and finally in may 06 i found a Dr. shankland from columbus ohio who told me i had all the symptoms of facial tendonitis and he gave me an antiflammatory/antibiotic injection into the tendon in my cheek. This was for swelling, pain and treatment and i could nt believe it but it helped!!!!I cryed with joy for i thought i was living with this the rest of my life. I had to go back 2 more time s for it about 3 weeks apart.That was my turning point for the major pain. I am now so much better but i still feel as if something isnt right in my face , perhaps something pulled in my cheek during the first dental procedure or something for my right eye and face look just slightly different than before but i can live with it so long as i dont have the pain like i did. I hope my story can help anyone whos had something like this like me or anyone else. Bless everyone here i love you all thanks for reading my story ..... YOU CAN Make IT!!!!!!!!

Name: Marilyn
Email: mudgiemomma007@aol.com
City: Troutdale
State: OR
Country: USA
Diagnosis: Geniculate Neuralgia
Treatments: NEURONTIN,LOT OF MEDS MVD Surgery
Comments: MVD Surgery worked for me
Date: 07/25/06

It started in 1994 my left ear started burning deep in side.I was told I had a ear infection, after lots of Doctors and testing. The Neurosurgon said I had a C1-2 jumped facet(broken neck)from a fall down 16 stairs which I never went to the doctor for WOW WAS I LUCKY.I would need surgery right away for a fusion.But the ear pain never really went away. I had over 30 nerve blocks 6 surgerys on my neck. nothing took my ear pain away by this time I had stabing,ice pick, burning pain in both ears left much wrose and now left face, mouth pain.I was taking 4000 mg Neurontin, vicodin, endocet.I coulden take it any more.I went to see my Neurosurgon at Kaiser, He said I think you might had a Nervus Intermedius.not knowing what that was we did some reseach. I still wasnt sure.He sent me to one of the best Neurosurgons (Dr Kim Burchiel) at OHSU. He ordered a MRI MRA.He said we can try sectioning the left nervus intermedius (brain surgery) on 5-7-2004 I did the surgery stayed only 4 days in the hospital they went in right behide my ear.I have had no ear pain in my left ear.It was no fun but was worth it.If my right ear gets that bad I will take the surgey over the pain that pain goes away aot faster.

Name: Huuto
Email: Private
City: Helsinki
State:
Country: Finland
Diagnosis:
Treatments: Have tried carbamazepine, acupuncture
Comments: Wish this would end
Date: 07/10/06

In the past ten years I have gone through many dissapointments, starting with my father commiting a suicide when I fifteen. Before that I was leading a somewhat good life. Having partially recovered from this tragedy, I have oftentimes found myself being very unstable. Self-destructive, bipolar, aggressive, full of pain, frustrated and empty. I took skateboarding to put all those negative feelings into. At some point it too became a means to harm myself. And of course I ended up doing all the nasty stuff accompanied in peer pressure. have crashed, smashed, hit the ground. Many girls I met were not able to understand any of the shit I was really going through. They´d be too busy going shopping, chit-chatting, avoiding the subject. And finally my mother started acting in the same manner. Males have feelins too. I know what pain in that sense is. Both physical and emotional. So that it hits your stomach. Then one and a half a year ago my left ear had to be operated. There was a tiny eardrum perforation. it had been there several years, causing only minor problems, but the doctors recommended an operation. And I believed. Well things didn´t go as planned. Some problem occured, infection perhaps during the time the ear was ´fully packed´. Doctors couldn´t see that maybe they´d made a mistake. Post-operation results were not too magnificient: almost completely ruptured eardrum, half-deafness on the left side, tinnitus and finally some type of neuralgia. From my point of view I have been mistreated. I´d face neglect from doctors. I have tried to explain tinnitus and the shocking pain. Especially in the sun shine, chewing, or trying to concentrate, the pain hits. I wouldn´t like to go on any drug regime. Carbamazepine had the worst side-effects. Anti-depressives cause a manic episode. Must I just learn to suffer. I´m so full of it.

Name: sharon
Email:
City: boise
State: idaho
Diagnosis:Trigeminal Neuralgia, Anesthesia Dolorosa
Treatments: Surgery for trigeminal neuralgia
Comments:
Date: 07/04/06

Feb 8th 2004 is a date I am highly unlikely to forget . I was admitted into an English hospital for surgery to the trigeminal nerve . First the Professor that did this op had an " accident" in theater where he brought me round before removing the surgical halo resulting in cutting my head . When I asked how this had happened he replied " It's your own fault you woke too soon". Tests done following the op showed no neuro responses in the right eye and a hearing test showed the ear was " dead " ( all on side he had operated on ) . I was in constant pain with headaches that were 24/7 and no amount of pain relief helped . When I went back for my check up I nearly fainted when the Professor told me he thought he had got the wrong nerve and asked if I would allow him to go back in . Of course my words were highly colorful and I made it obviously that under no circumstances would I allow him to go back in . I contacted a lawyer and started negligence proceedings . Now 29 months later I still suffer from constant pain no sight in my right eye , no hearing on the right , numbness ( with pain ) on all of right side of face even my mouth is affected where I can no longer chew food properly without it falling out of my mouth and I constantly drool . I recently saw a neuro-surgeon here in America and he told me I have Anaesthesia Dolorosa a condition brought on by damage to the trigeminal nerve . I am awaiting surgery but because this is classed as pre-existing I can not get health insurance and estimated costs so far are a staggering $100,000.00. My medical negligence case is still pending a hearing as my lawyer is still attempting to gather medical evidence and the difference over in England is you can not sue the actual dr that performs the proceedure you have to sue the hospital or hospital trust . Right now Im just left in limbo I cant get medication because nothing helps and I cant get the operation because its going through an appeal system because the local county have refused to help pay and until the appeal goes through no one knows if this operation will go through . The appeal is being heard August 16th so all I can do is wait .

Name: "UNDERSTAND"
City: SAN ANTONIO
State: TX
Country: US
Diagnosis: Trigeminal Neuralgia
Treatments: TORADOL
Comments: WORKS GREAT!!!
Date: 06/28/06

I RECVD MY FIRST EPISODE WHEN I WAS ABOUT 28. I DEVELOPED A PAIN ONLY PEOPLE WITH THIS CONDITION CAN UNDERSTAND. LONG STORY MADE SHORT WENT TO DRS, DENTISTS AND NEUROLOGIST AND NOBODY KNEW WHAT WAS WRONG. I WAS DIAGNOSED WITH SINUS INFECTIONS, MIGRAINES. ANYWAY, I WAS FINALLY DIAGNOSED AND WAS GIVEN TORADOL. I HAVE BEEN ABLE TO CONTROL THIS HORRIBLE PAIN WITH THIS MEDICATION AND JUST WANTED PEOPLE TO KNOW SO THEY CAN POSSIBLY ASK FOR IT TOO. FYI..NEURONTIN, IMITREX, ANTI DEPRESSANTS & VICODIN DIDNT HELP!!

Name: "Kells"
Email: kelbel059@hotmail.com
City: Grand Rapids
State: Michigan
Country:
Diagnosis: Atypical TN
NI:
Treatments: Trileptal
Comments:
Date: 06/18/06

I started having symptoms 15 months ago and was diagnosed with TN shortly after. My symptoms started with right ear pain that lasted 2 days. I went to my doctor's office because I thought I might have an ear infection. Fortunately, I saw a very sharp PA in the office, and he referred me to a neurologist right away. After the usual testing to rule out all the other possibilities, TN was diagnosed. I was put on a low dose of Trileptal, which seemed to prevent further occurances for a while. However, its hard to know if the medicine caused the remission or if it was just a spontaneous event, since TN symptoms can come and go over long periods of time. My symptoms of ear burning, cheek and jaw aching are becoming more frequent and intense. I have never had the "lightning bolt" symptoms that others describe. Over the past year, I have been on increasing doses of Trileptal, now 450mg am and 150mg pm. I had a long consultation with my neurologist recently, specifically to talk about the potential course and treatment options. I brought with me the most wonderful book, Striking Back, The Trigeminal Neuralgia and Face Pain Handback. I can't say enough about great this book is as a resource. I'm an RN and am used to reading medical texts, but this book is written for the lay person and is so easy to read and understand. I recommend it for EVERYBODY,it a very worthwhile investment. Find it on the home page for this site, or the Trigeminal Neuralgia Association home page (tna.org) My neurologist is a very warm, nice guy, and suggested I go see a new neurosugeon in town who just finished a fellowship where he studied the microvascular decompression procedure. My PCP was sent a letter by the neurologist to recommend I be referred to see the surgeon. After waiting 3 months, it turned out the PCP office just filed the letter and never called me or set up the referral or anything. Now I'm told, since the surgeon does not contract with them, that the referral request needs to go to a medical review board before I can go to see him. That was 3 weeks ago, still waiting to here. (This is an HMO, of course). It's frustrating that patients aren't allowed all the options available because an administrator is watching the bottom line only. You may have guessed that I have no warm feelings towards this particular HMO. The worst thing is that I am employed by the same corporation that runs the HMO. I work in the outpatient surgical center they own and the profit we make keeps the rest of the HMO afloat! Besides, I'm sure I know more about TN than any doctor on their review board. I've done my homework! After all the research I've done, I know that I want to have the decomression surgery before other procedures, because this treatment does not destroy the nerve, thereby causing less potential lont-term effects like numbness. I know that continuing to increase meds forever is not the answer, because the Trileptal makes me drowsy, and I can't work as a nurse like that. Anyway, this is the first time to tell my story. I'm just about ready to call for an increase in my drug dosage, because the increase 3 weeks ago has not helped much. Please feel free to email any comments. Support is very important for all of us on this journey.

Name: Elsie
Email: MaaGoo@aol.com
City: Davenport
State: Ia
Country: USA
email_private: No
Anonymous: No
Nickname: MaGoo
Diagnosis: Atypical TN, Atypical Facial Pain
Treatments: Many
Comments:
Date: 06/13/06

I have had TN now for over 3 years. I know this started after having teeth pulled. Actually it was another dentist who dianosed this horrible painful monster.Or shoule I say DEVIL!!!!!!!! I started out on Tegretal.Next we added Neurontin, Vicodin,Clamactil. and now with all these drugs the Neuro has me on a duragesic patch. So I am on many pills 3 time a day and change the patch every 3 days. Now I have also had the surgery which did not work,and was painful after. So much so that I asked for the Priest to give me last rights.Yes, I thought I was dying. With the pain still there,so bad I would stay in bed and cry, so the Neuro put me on Zoloft. ANOTHER drug. Two weeks ago I had the Radial Surgery. The Doc's say the pain should go away in 4 to 6 weeks. We'll see about that. So, had anyone been through this? Drugs' surgery and radial surgery? Please let me know. I realize everyone is different.So if you have another way of getting off this reeling feeling (DRUNK WITHOUT DRINKING)let me know. I'd be greatful. I shall pray for all of you. Good luck and get well!!!!!!!!!!!!!

Name: JENNIFER
Email: JENEDGE@AOL.COM
City: GAINESVILLE
State: GA
Diagnosis: Trigeminal Neuralgia
Treatments: LYRICA, ELAVIL, TRAMADOL, AND NEUROTIN
Comments:
Date: 06/08/06

I have had trigmenal for almost 5 years now. I have found great relief from a new drug called Lyrica. I take 300 mg per day. I found out I was pregnant (it was not planned) but I since I was on the Lyrica the doctors were concerned cause in lab rats it causes birth defects. I ended up miscarriaging cause something was wrong with the baby. THIS STORY IS TO HELP WOMEN EVERYWHERE WHO MAY BE ON LYRICA. BE AWARE OF THE DANGER OF IT WHILE PREGNANT PLEASE!!! I HOPE THIS HELPS SOMEONE.

Name: Saini
Email: Private
City: Greenwood
State: In
Country: United States
Diagnosis:
Other: chornic pain, from a operation, bilaterial hysterecomey
Treatments: lots of different medication, pain medication does not work.
Comments: Why does the government let these doctors get away with abuse, taking your lifes from you
Date: 06/05/06

I was a happy person always laughting and making others laught a lot. Then I got connected with a phyco doctor. Here is what happened. Dr. Alan Gillespie,, he practice at St. Francis South Campus.Greenwood,In. He messed with me before my surgury, and lied about my condition. He has also falisfied, all my medical records. I first went to him approx. on 1983. I needed a gynocologist, and he was fresh out of medical school. He scemed to be a smart intellengent doctor. So I decided to make him, my gynecologist. I got married on 12-1984 and shortly after that. I found out that, I was expecting a child. I went to Dr. Gillespie, so he ran test on me. He confirmed that I was pregnant. I was feeling sick around 1988. I went to him to make sure it was not my female parts, making me sick. He said everything looks in great shape. I searched on to many other doctors. No one could find out why I was sick. I notice that my harmones were unbalance, but again Dr. Gillespie said everything was in good shape. I went down the roads with many doctors. Finally a doctor had to ran test on me and tell me twice. That I needed a gyncologist. I had an enlarge fibrosis sist. The size of my uterious. Med check, told me I had a hernia. So after, all test were ran. The results were the fibrosis sist. My gallbladder, even went bad from the fibrosis sist messing with me. Still Gillespie, would not fess up. When he performed, my bilaterial hysterecomy, he cut me too deep, and cut my main central nervous system, in my pelvis area. I suffered with chornic pain, all the time. My medicine just takes, the edge off my pain. He also tried to take me out, after surgury. He overdosed me on morphine. If it was'nt for my mother, being in my room. I would of dies. I have reported this, to the Senators, and they will not do nothing about this doctor. The doctor whom told me this. Would not put it down in writing, because she is afraid of him. I was told that, I had to keep my pain under control. I have to treat my condition, as a diebectic would. The neurologist told me, it's up to me how long I live.Isnt this a ----- Is there any honest doctors out there? And please tell me, why are you all afraid, of telling the truth. This doctor needs to be stopped. He has messed many others up. What am I another notch to add to his belt. I had found out the hard way. It's all about money. That is really a shame.

Name: Terry
Email: lrisorto@hotmail.com
City: Colorado Springs
State: CO
Country: USA
Diagnosis: Trigeminal Neuralgia
Treatments:
Comments: PLEASE HELP MY SISITER WITH SOME INFO
Date: 05/31/06

I have been searching for info on TN for my sister. She has just been finally diagnosed with the TN after having several root canals done . Her pain starts when she drinks or eats, it is in the temple, jaw and continues on behind the ear. If someone could please e-mail me about who she can contact by e-mail to chat or get some good advice I would greatly appreciate it. She asked me to help her find out all I can on this terrible painful disease. Her doctor just put her on pain killers but they are not helping. Sincerely, Terry

Name: Robert
Email: rbrown@stjohn.k12.la.us
City: LaPlace
State: LA
Country: USA
Diagnosis: Atypical Facial Pain, Anesthesia Dolorosa
Treatments: Nuerontin, Zanaflex, Cymbalta, Morphine sulfate, Vistoril, synthroid
Comments: Meds help some but nowhere near enough
Date: 05/30/06

I have suffered moderate to severe constant pain in my left jaw that extends upwards to my temple and over past my ear. This is the result of an injured nerve during the removal of my left bottom rear wisdom tooth 3 years ago May 6th 2003. The lowest I can get the pain on a 1-10 scale is around a 3-4. During the course of a typical day, I will have pain that will range from a 3-4 to 7-9. Fortunately, I only experience the highest level of pain in the early to mid morning hours but if I go outside in the heat and humidity for more than 15 minutes or so, my pain level spikes to a 9-10 and the left side of my face swells slightly and is hurts to touch. After 2-3 hours have past from exposure, I develop extreme nausea with severe vomiting. When I have these episodes, it takes me at least 36-48 hours to recover. Needless to say, living in southeast Louisiana with all of the heat ande humidity, I am forced to spend all of my time indoors with the A/C set on 67 degrees to remain comfortable. A few months after the removal of the wisdom tooth, the same oral surgeon performed a "nerve decompression" in the area. This only caused the pain to increase significantly. About 6 weeks after this procedure, the same oral surgeon did a temporary long acting nerve block of which during one of the injections, the main nerve was hit of which caused me excruating pain for 2-3 days. After this procedure, I decided to part ways with the oral surgeon and seek help from a pain management doctor. I found a doctor that was God sent in that he is very understanding and wants to do his absolute best to alleviate the pain as much as possible. Hurricane Katrina forced my pain MD to leave the area and move out of state due to his home and office were severely damaged. I am now going out of state every month to see him. He can no longeer prescribe any narcotic pain medications. However, my family MD agreed to work with him with taking care of my prescriptions. I have been out of work since August 05 on medical leave. The time off has helped me some with getting more rest, but the pain is as bad as ever and seems to have gotten slightly worse. I have been diagnosed as best as possible with Anesthesia Dolorosa and possibly RSD of which I refused to have to test run to determine this in that I was and still am afraid of any procedure that might increase my pain level. This is only the tip of the iceberg with what has gone on in my battle with this condition. Thanks!

Name: angela
Email: abobovitch@yahoo.com
City:
State:
Country: russia
Diagnosis: Trigeminal Neuralgia
GN:
Treatments: tegretol
Comments:
Date: 05/29/06

I was eating icecream watching tv, suddenly last ice cream bite hit the back of my throat,pain was like a pulsing triengle, the most comfortable position was wtih my toung out,and head side ways, my boy friend sad I had my eau roled back to, atack lasted for 20 mnits I was exsosted after and went to sleep, next four days pain and atack became more intense and friqvent ,I got refferd to otariongologist wich subscribe me paracetomol and and warm pads. It make me fill worst I went to see neurogoist, ectialy a few of them ,all have different opinion about the drugs I should take, I am desperate. today I will seek more opinion,but from that I read now and being dissable for a week due pain attacks I dont have much hope.I know that paracetamol will not do it, so a maegretol is usless, and I am looking a tegretol prescription now, and think about side effects, I am 30,not married,and I sceard my fiance, he knows about condition of TN,he watch helplessly one of my attack,we been together for 7 years,of course like in any relaitonship we ren thru the problems, if its for a rest of my life and with havy side affect medication and costly therapys, and two years a go I had Bells palsy from wich I recovered in two week getting vitimis B6,B12 and cortison shuts.Thats not easy to comprehend for anyone. I see that I am facing, I cannot do it to him.Of course I will try some therapy , but I know now my life never gone be the same, i am not taking tegretol yet.I would like somebody who went thru that tegretol write to me about side affects, should I just take a troumendous pain or get on the teraphy, to forget abut a pain I run on the traidemil,two nights ago I run for 4 houers at night and then I got exsosted I finaly went to sleep for 3 houers, that felt good, becouse I did not had sleep for a week.Sorry for misspeling, I am russian. Please write me abuout your expirience with tegretol.

Name: William
Email:
City:
State:
Country:
Diagnosis: Glossopharyngeal Neuralgia
Treatments: tegretol
Comments:
Date: 05/22/06

Story

I've dealt with this problem for at least 15 years. It is scary, but I'm not going to let fear of the pain control my life. When the pain comes, I start taking the tegretol. I usually start from zero miligrams and go to 1200 miligrams within a few days. Pain started this time two months ago. The tegretol kept the pain in check. Two days last week I had to take 1500 miligrams. Side effects from the tegretol aren't too bad for me. They beat having the pain anyways. Hopefully in a few more days I can start coming off the medicine. I'm a big man, 6' 3" and 240 pounds. Maybe that's why I tolerate the tegretol fairly well. If I can be of any help, please contact me. William Hayes, 75 Hockanum Blvd., APT.# 2813, Vernon, CT. 06066, or call at 860-646-8228.

Name: "Princess"
Email: Private
City: abuja
State: fct
Diagnosis: Trigeminal Neuralgia, facial pain
Treatments: laratyn,tagretol,pain relievers,earsprays,nose sprays
Comments: they all failed
Date: 05/15/06

i am 23 yrs of age, from nigeria. it started 3yrs ago when istarted having earache.my doctor confirmed to me that i had tonsilitis which was removed through a tonsilectomy.3months after the operation i started noticing that i couldnt stay in the cold,cuuldnt drink anything cold and i keep having this life threatning pains.my facial bone aches,my eyes ache.i sometimes have severe headaches and its like somethings trying to pull my face off but there is no numbness. i sometimes get blurry visions, and have headaches. these pains are usually triggered by wind, cold water, fan, air conditioner and at times just puttting water on my face triggers. i always inconvenience people around me because they would have to put off their Ac or fans when i am around. people dont seem to understand this kind of disorder even the doctorsthe worst of it is that the doctors here do not seem to understand what is wrong with me.pls help.i actually thought i was the only one suffering from this kind of disorder but im glad im not alone.pls help and tell me if there are solutions to my condition.i dont even know what type of facial neuralgia it is.please help i feel like going mad.its really driving me crazy.no one seem to have ever heard of this kind of disorder in my country.im scared and im all alone.ive tried all sorts of medications but theyve all failed.please reply so that ill start Having hope.thanks thankyou and pls reply

Name: Bruce
Email: brucekirkland@comcast.net
City: Nashua
State: NH
Country: US
Diagnosis: No Diagnosis Given but I feel it is Atypical Facial Pain
Treatments: Ibuprofen, amoxycillin, augmentin, Neurontin, Clonazepam, Vicodine, Percocet
Comments:
Date: 05/13/06

In March 2005 I had 4 fillings replaced. The dentist recommended this action as the fillings were old (I think he just wanted to make a little more money). Anyway, since the fillings my number 14 tooth (upper left side of face) was bothering me but at the time i did not know it was the tooth. At the time I thought I was have sinus issues and as a result took Sudafed to reduce the eye, cheek, and forehead pressure (Numerous headaches). The pressure and irritation started as a mild irritant but slowly grew worse. On December 16, 2005 I visited a new dentist for a routine cleaning and consultation. She recommended having two filling replaced which just so happened to be two of the teeth I had fixed in March 2005. I called my old dentist who botched the first time and he gave me my money back (little consolation).

 I mentioned that I had sensitivity on the number 14 tooth so she then took x-rays and found that I had an abscessed tooth, which she recommended being looked at by an endodontist. On January 9, 2006 I had a root canal done and that's when the real pain really began. I was given amoxycillin and augmentin because the doctor thought I had a bad sinus infection. Ten days later I went back to her because I could not function at home or at work. All I thought about was the pain and irritation in the left side of my face (mostly my in my left eye). She sent me to an oral surgeon. On Feb 3rd I had an apicoectomy (surgical removal of the root apex) done and the doctor explained that two of the three roots were going into my sinus cavity and that was most likely what was causing my pain issues (the oral surgeon said they root canal was done well, but would not have been able to correct my issues). This made me feel a little better that I had the apico performed. After he removed the roots I still was experiencing facial pain and could not stand in any more (Some of the pain and discomfort were lessened but I was still a mess).

I went back to the oral surgeon and he said my tooth was good and that he recommended a facial pain specialist. Note:I also visited my primary care doctor and was given a sinus x-ray and CAT Scan. Both turned out negative and my sinuses were clear. There was some thickening of the sinus above the abscess but no sinus infection (This was confirmed by an ear nose and throat doctor). At this point I was insane not knowing why I was having such problems. In March 2006 I visited a Maxilofacial Pain/Oral Surgeon specialist in Boston. He gave me a thorough exam and agreed with my oral surgeon that the tooth was good and he recomme

nded starting two medications (Gabapentin/Neurontin, and Vicodine as needed for breakthrough pain). At first they worked ok by reducing the symptoms. After 2 weeks I could not stand the eye pain/irritation and went back to him for a follow up. At this point I wanted the tooth pulled but he convinced me not to have it extracted. He felt the pain would remain even if the tooth were pulled. He started me on Clonazepam and Percocets. This definitely did the job, but I at this point I feel like a junky and hate it. I hate the pain more so I continue on this course of action. I started with two to three Percocets a day and now am taking only one approximately every other day, so my pain seems to be receding. I am still on the Neurontin (5 pills a day) but I am just praying that the problems slowly go away as my surgical site heals. I would encourage anyone with similar problems (facial pain on one side of your head which include- persistent headaches, Sinus pressure symptoms, Eye pain and pressure, sore or achy muscles in the neck or upper back) to reply to my email address and I share the name of the doctor in Boston.

As many of you are aware there are very few of these people around and they are hard to find. To date I have visited every doctor imaginable (primary care, ear nose and throat, dentist, endodontist, oral surgeon, and facial pain specialist). I finally feel I have found the right person to help me (He is very good and compassionate to my plight). Not sure how long till I am pain free but I am very optimistic now that I found the right doctor for my problems. Best wishes to all and my prayers for recovery/pain relief.

Name: valentina maria liao
Email: private
City: brentwood
State: ca.
Country: usa
Diagnosis:  Geniculate Neuralgia.brain injury,frontal-back,too, lobe,fall down-bump head.
Treatments: pain pills,demoral,therapy,phd.-,group therapy,meds.,docctors,too.
Comments: i don't work or not,well i sort of stop growing or healing,ok.slowing decaying,ok,bye..
Date: 05/08/06

well i was a teenager,danville,ca.-,now an adult,now.well when i was i teen a i playing with my friend in gym,walking,too. did not watch out at was i was doing,hit something metal,like a pole,right side,front.,i,bang it.dazzy feeling. and got wackt by an hand on front head,by my brother inlaw, because he hated me,and i was tried,too.yell at my othe brother and parents,and he did not like it,buggy.nune of hies biznacbizness,chased me out of family room,in the guest room,hit me,with my sis.,there too,7mos.pregant.,sahking after even after eathquake 1989.banged my left side,front.on a leg of table.i feel sad not happy all the time,scream,too.,maybe demerol fixed it,or not,sideeffect stop growth process,ha.,i hate that,so ,i want brain surgery or brain transplant to fix it. bump head doing-summersaults,on back,alrite,too.accident prone,stupid me,why did i do that,dumby.your so not like that,calm,gentle,smart,love pets,artsie,plants,too,pets,house,cafe,plants,family,peoples,car lover-petlover,too.,watch your mouth girl,or soap in it,or black color candy in it.,or jasmine tea down theee throats,or a spank on but., or a swift talk down,well they done long time ago,and your so,carefree-careful,too,too,ps. i also had type 2 d.-,too.,thats all bye about me.bye,aslo ps.i have pets,too.dogs,ok,bye..thats all,bye,kit,tlc.,peaces.bye..ps.i hate 9-11,too,bye...

Name: Cindy
Email: cvmccomb2000@yahoo.com
City: Sherbrooke Quebec
State:
Country: Canada
Diagnosis:: Eagle Syndrome, MS
Treatments: Lamictal,Tramacet Nozinan tegratol morphin.many more
Comments:
Date: 05/03/06

I have MS also this is what made it hard to find my problem. where do I start. Well 4yrs ago my problem started. With symptoms like trigeminal Neuralgia had all the symptoms. they gave me so many medications pain killers to many to say and anticonvuis Tegertal Nereontin Dialtion then finally Lamictal And for pain Morphine. My sympatoms were Right side facial pain my mouth tongue lower chin and shocks in my mouth from any movement of my tonge. Even swallowing was unbearable,talking or any movement of the face no pressure of any kind. Did lose alot of weight. Went through many Nueroglist and unable to find the problem. But one Dr. did an ear,nose throat dr. did It a rarely heard of Eagle Syndrome. Only 5% ot the population have this So this can easily be undeteable.I  was the first case in 35 yrs in my area to have this problem. Had to have 3-4 operations. It seemed that I was growing a bone off of my lower jaw pushing upwars not to far from my thydroid. But 4yrs later I am still haveing the shocks in my mouth but they tell me it is phamton pain. So now they are trying a knew kind of therapy called EMDR. It does help the phantom pain. I am still taking Lamictal,tramacet,nozinan for this phamton pain. Maybe someone has the same problem and help me to understand this better. MY referances were www.eaglesyndrome.com and www.emdr.com

Name: phlosy
Email: flossiemonroe@aol.com
City: garland
State: nc
Country: usa
Diagnosis:: Trigeminal Neuralgia
Treatments: tegretol
Comments: I WANT MY LIFE BACK
Date: 05/01/06

I HAVE HAD TN FOR EIGHT YEARS NOW.I WENT FIVE YEARS UNTREATED BECOUSE THEY DID NOT KNOW WHAT IT WAS THAT WAS THE HARDEST PART.TEGRETOL WAS MY FIRST TREATMENT FOR THREE YEARS.THE FIRST SIX MONTHS I TOOK THEM I HAD KNOW PAIN.ILIVE IN THE SOUTH WERE THE WEATHER TENDS TO GET BAD FROM TIME TO TIME.WHEN WE HAD OUR FIRST TORNADO OF THE YEAR THE PAIN COME THATS MY PROBLEM THE WEATHER RAIN OR COLD WHEN THAT COMES IM IN TROUBLE.AT THIS POINT TEGRETOL IS NO GOOD TO ME IT DO CALM THE NERVE DOWN BUT IM STILL IN BAD PAIN.I HAD MY FIRST SURGERY IN JUNE OF 2005 THE PAIN STOPPED UNTIL NOVEMBER 2005 WHEN IT STARTED GETTING COLD IM NOW STARTING OVER WAITING ON THE DR.IM IN PAIN EVERY DAY OF MY LIFE AND I SIT IN THE HOUSE WERE THE HEAT IS. IN THE SUMMER I CANT TAKE AIRCONDITION OR FAN I CANT STAND ANY THING BLOWING ON ME.KNOT EVEN THE WIND.I JUST WANT MY LIFE BACK. SAD THING ABOUT TN THEY MAKE YOU WAIT ALL THESE YEARS BEFOR THEY DO ANYTHING BUT THEY CALL IT THE "SUICIDE DISEASE.

Name: "New to This"
Email: Private
City: New York
State: NY
Country: United States
Diagnosis: Trigeminal Neuralgia
Treatments: Gabapentin
Comments:
Date: 04/22/06

I was just diagnosed with TN about a week ago. My cat, whom I was very attached to, had just passed away and without getting the chance to cope with her loss I became sick. At first, I thought I was coming down with strep throat, because I had dull pain in my ear, jaw and slightly swollen throat gland. However, a few days had passed and I was becoming increasingly uncomfortable with the pain throughout my jaw line. Being convinced that I had a tooth problem, I ran to my dentist, who took x-rays and found nothing wrong with my mouth. The pain was so intolerable at this point...I sat at work and cried in my office. I was experiencing frequent episodes of lightening-like pain on the right side of my face...mostly through my jaw line, but also in my cheek bone and around my eye. I had never experienced pain like this before and found it difficult at first to explain to others what I was feeling. After numerous doctors, hospital visits and cat-scans, I was told it was TN. I am currently taking the anti-convulsant drug, Gabapentin, three times a day. It has helped with the pain a little...making the episodes less frequent and less intense. However, I am still very uncomfortable. I was also prescribed the narcotic, Vicodin, but it only makes me queezy and does nothing to help with the real pain. Unfortunately, I was told by my neurologist that there's very little that can be done to avoid this pain completely, so I guess we're left to deal with the what comes our way.?.? Also, I've noticed that after the first five days of dealing with intense facial pain, my scalp, nose and gums have become very sore. Like TN pain wasn't enough! What I want to know is why does TN strike the people it strikes and how long will it last? I'm new to this... Thanks for reading my story.

Name: Susie
Email: s_campbellwork@yahoo.com
City:
State: FL
Country: USA
Diagnosis:: Trigeminal Neuralgia, Facial Nueralgia
Treatments:
Comments: OUCH and Double OUCH!
Date: 04/20/06

I have not been diagnosed, so I suppose this is a self diagnoses that I found from my mother-in-law who has it (surprsingly). I t is a small world! I had my wisdom teeth taken out because the doctor said it was that and after a few months, the pain came back to my disappointment! I had to be put on narcotics while I was pregnant with my daughter to control the pain. It helped slightly, but mainly because it knocked me out! I am 21 and have had this pain for almost 4 years! It is unbearable most of the time! I can&#