This page last updated 1/4/17


Stories of Trigeminal Neuralgia, compiled by maggie

 

After a wisdom tooth extraction, trigeminal neuralgia (re)appeared, full force. What follows are alternative, noninvasive suggestions, gleaned from the facial neuralgia website (facial-neuralgia.org). I’ve starred them according to their usefulness to me. I hope this helps . . .

 

Go to the following Oral Nerve Injury site (click here) if you believe your facial neuralgia was caused by dental trauma. Some alternative helps for nerve pain are zostrix, geranium oil,externally— and bromelain and papain, internally. You can look these up on the Net and decide for yourself.

Go to this site then scroll to read about healing effects of cayenne pepper creams on trigeminal neuralgia, etc.

Go to this site for information regarding Vit B12 and trigeminal neuralgia.

 

*******Name: Charlie
Email: dotpeten@yahoo.com
City: Montgomery
State: Al
Country: USA
Date: 06/28/2003

I have had trigeminal neuralgia for about 19 years. I have tried all likes of meds, I've had surgery, I've had the alcohol injection, I've tried it all. The only true relief I get that is dependable is PRAYER! It works every time.

 

**Name: gayle
Email: dochara@aol.com
City: coeurdalene
State: Idaho
Country: USA
Date: 06/20/2003

i have suffered bouts for almost 20 years now-stabbing pain in the ear area and swollen gums and soreness in the mouth and back of the throat-i have been on many medications through the years-my pain usually lasts for 5 days-but day before yesterday i was hit very hard with the usual symptoms—-i found relief in just 2 days—————ibuprofen every 2 hours and a wonderful blue spray called chloraseptic mouth pain spray-it numbed the pain in my mouth and gums and that made the pain in my ear subside-i feel pain free today-my bouts are usually caused by cold wind in my ear or eating something that causes gum irritation-it usually starts with pain over my eye and then the side of my head and ends up at the gums and back of my throat-even brushing my hair hurts-my eye waters with each pain-which seems to come every 20 seconds-anyway, try the spray and see if that helps anyone out there-good luck-gayle

 

****Name: Trai
Email: StrawberryWild78@hotmail.com
City: Portland
State: OR
Country: US
Date: 07/14/2003

My mother has been trying some alternative ways besides medication to help cure her TN of more than 10 years. My dad's friend suggested she tried taking some Isotonix OPC-3. It's in liquid form and is suppose to help everything from depression to chronic pain. It's all natural. The website is http://peaceofmind.isotonix.com/ It costs $64.95 a bottle and is normally delivered within 3 to 5 days. One bottle lasts for about 2 months. Besides helping TN, it also helps give more energy, helps prevent cancer, clears the skin, helps with insomnia, etc. My mom has taken it for a month and half now and she has gotten less attacks. She also does acupuncture occasionally and also drinks Chinese herbs. This year her TN pain is at her worst. We are all hoping that the OPC-3 will help cure her of the terrible pain. My dad's friend who recommended my mom the OPC-3 said that she knew someone with TN and that now she is fine after taking it. But i don't know how long she was taking the OPC-3 before the pain was gone. I just hope that very soon my mom will be well again. Good luck to everyone.

 

******Name: Herb
Email: herbrossmana@netzero.net
City: Santa Cruz
State: CA
Country:
Date: 05/02/2003

My TN started in late March, 2003 a few days after my dermatologist had frozen several pre-cancerous spots on the left side of my forehead. The pain on the left side of my forehead, around the eye, the upper cheek, nose and upper lip was intense. It was extremely painful to eat, brush my teeth, and sometimes even to speak. Because I couldn't bear to use my electric razor on the left side of my upper lip, I now have a full mustache (all white) My daughter says it makes me look distinguished, but my wife says it has to go as soon as I can get to it. At first, the doctor thought it might be shingles and I was put on a course of medication, but that had no effect. To kill the pain I first tried Darvocet to no avail. Then the doctor prescribed Percoset and that just made me nauseous and didn't do anything for the pain. Then my regular doc came back from vacation and immediately diagnosed the TM. He put me on Neurontin at 1200 mgs per day.

Also, at the urging of some friends, I started getting acupuncture about two weeks ago. I have been getting the acupuncture once a week, tomorrow will be my third session. Daily I take Chinese herbal medications prescribed by the acupuncturist. He told me last week that the treatment will be complete after four visits, so next week should complete the acupuncture.

Also, an old friend of mine from Philadelphia who is an osteopath, recommended taking a heavy dose of vitamin B6 as he said he has had success with that in treating neuralgia in his patients.

As of right now, I am essentially pain free. I can eat, brush my teeth, speak without pain. I still haven't shaved off the mustache, though. However, there is still painful sensitivity to touch on the left side of my forehead and the left side of my nose around the area of my eye. Needless to say I tend not to touch it.

I don't know if one of the above remedies is working, or if all of them are working, or if none of them are working and the TN is just receding on its own, but I am just grateful to be rid of the intense pain.

I hope that this information can be of help to someone. Best wishes to all.

 

******Name: Jasper
Email: jaspers3@aol.com
City: Middletown
State: RI
Country: USA

I was diagnosed with atypical facial pain/atypical neuralgia about a year ago. I tried many treatments. My neurologist prescribed 100 mg of Elavil (amytriptiline), which helped somewhat. I started taking 500 mg of magnesium (which is supposed to help nerve problems) and went on the Atkins diet, eliminating sugar from my diet. I don't know which of these worked, but I am now almost completely free of pain. I would definitely suggest to anyone suffering from nerve pain to try the magnesium. It has been proven to work with fibromyalgia, but nothing has been done so far with facial neuralgias. My neurologist (on the Brown University medical faculty) was definitely interested.

 

***Name: Gillian
Email: gillian@thestopgap.fsnet.co.uk
City: Wincanton
State: Somerset
Country: UK
Date: 02/06/2003

Further to my earlier posting:p 1; having now looked around your site further I can confirm that there ate indeed papers in the literature related to the use of B12 for TGN, dating back to 1957. Many of the more recent ones r in nutritional,bichemical 7 physiological rather than medical literature, as of course it is hard for researchers to get papers published which support the use of nutritional therapies ( which attract little or no royalties and thus little profit) in medical journals ,whose print-runs are often funded by pharmaceutical advertising.. though some patients May respond to oral supplementation- they may well have underlying malabsorption or utilisation problems- which, may well be why they have developed symptoms as severe as TGN in the first place, so diet & supplements may not be enough & IM or IzV administration essential. This is comparatively cheap & surely worth a clinical trial for any patient with this condition.

2. I forgot to mention that as a matter of interest mention that my most notable triggers apart from cold air and agrochemicals are the fumes of or contact with cinnamon & cloves, and eating, or even inhaling 9 e.g. cooking smells & old wallpaper paste made of potato starch) of the whole potato family ( which are known to be a factor in chronic sensitive teeth) i.e. potato ( but not sweet potato which is in fact related to convolvulus),tomato,aubergine (eggplant),cape gooseberry 9physalis),tamarillo, chili, and sweet peppers ( capsicum),and tobacco(nicotine) . This may explain why some sufferers have obtained relief form homoeopathic Belladona & Dulcamara- both derived from the potato family & in keeping with the homeopathic principle of treating like-with like. I have not found homoeopathy helpful for my TGN though I often use it for other problems with marked success. The best way to check if u have a food sensitivity is to leave that whole food family off for not less than 5 days, longer if you are a meat-eater or have sluggish digestion, and then do a food challenge for that food once you have 'unmasked' from it. Be armed with some vitamin C & alkali salts to switch off any reactions, which may be severe. It took me years to discover this and that potatoes ,one of my staple foods was as one of the main causes of all my pain- but food sensitivities are an individual thing & for other sufferers the trigger may be something else. However I would check out potatoes early on because of their track record in causing sensitive teeth. Good Luck! Gillian

 

***Name: Dona
Email: janod@webtv.net
City:
State: MO
Country: USA
Date: 02/05/2003

My husband has suffered with TN for 5 years, which occurred after some shoddy dental work. After being on all the medications, he finally decided to have the surgery. Microvascular Decompression. His doctor, who we check ed out thoroughly was fantastic. Dr. Ray in Cape Girardeau, Mo. So far my husband is pain free, and now cries with joy when he brushes his teeth, instead of pain. Good Luck to all of you suffering from this terrible affliction.

 

******Name: Hanora
Email: tallulahsfriend@yahoo.com
City: Toronto
State: Ont.
Country: Canada
Date: 01/31/2003

I've posted here before, I think, but feel compelled to share my success in ridding myself of bilateral, MS related, TN once more. I use Zostrix, capsaicin (hot pepper) cream and it works brilliantly. I apply it every 3 to four hours and have been pain free since I began several weeks ago. Tegretol no longer worked for me but did make me feel extremely ill. I was sure I faced a lifetime of incapacitating pain. I was wrong. The only time I get a twinge now is when I get cocky and forget to apply. Since we've been having one of the most brutally cold winters on record I should be in agony. But, instead, I'm so fine that I can actually forget to use it.

After my last post I received an angry email from someone who applied it on her legs and buttocks and then jumped into a hot shower and attempted to scrub it off. She experienced a severe burning sensation and called 911! Do research how to use it, don't use just before or after a hot shower or bath unless you want to really turn up the heat, perhaps to an uncomfortable degree. And, don't get it in your eyes, trust me, I'm quite careless and I've done this too many times. No systemic side effects and no pain, NO PAIN! The science is very solid, this stuff works. It's miraculous, really, hot pepper cream instead of stupefying, nausea inducing drugs or surgery. Good luck to all, Knowledge is power.

 

******Name: Julie
Email: vanzandt@harbornet.net
City: Finland
State: MN
Country: USA
Date: 01/26/2003

My husband has found a bit of temporary relief from his severe 24/7 TN pain. I want to share this with you. It is as simple as a deep foot rub. It may sound too easy, but perhaps you do not realize that virtually every point in your body has a connection in your feet. It is very possible to give yourself a foot massage; however, I do this for my husband. It is a loving gesture, as well as a necessary one since he also has a ruptured disc in his back and cannot bend without pain.

The entire area of the toes are related to the head, especially the tips. Rubbing the toes, each one, all over, across the tips, and even in between is very good. However, it will probably be too painful for the suffering one to do it for long. Start out gently, and only do it for as long as they can stand. My husband says his toes feel so bruised, that he can only tolerate it for a bit, but it does bring some relief.

It is best to start at the ankles, and move down through all areas, including the heel. Go slowly but firmly throughout the entire sole of the foot, feeling for tender areas. When you hit one, stop there and work the point for a while. Apply GENTLE, but firm pressure. Stop when the sufferer says 'enough'. For some reason, the areas related to the stomach, spleen, gallbladder and even liver, seem to bring the most relief to my husband's head. This is found midway down the length of the foot straight down from the second toe from the baby toe. Experiment, and see which works best.

Use massage cream or olive oil to get a good deep massage. If the whole idea of foot massaging is too much for you, then try first with dry hands over thin cotton socks. If you still aren't comfortable with that, hand massaging can work as well. I just don't think it is as thorough as a foot massage. The upper portions of the fingers, front and back, and the tips are related to the head. I think it helps for the sufferer to even picture the pain leaving the tips of the toes or fingers as they are being rubbed out.

Again, these things can be applied to yourself if necessary. My book suggests that - you will not be dependent on someone else then when you need a bit of relief.

More information on the points of foot massage can be found in books - I've gotten most of mine from a book called NEW CHOICES IN NATURAL HEALING edited by Bill Gottlieb and published by Rodale. You probably can only find this book used or at libraries. Try E-Bay or half.com, or Amazon, which also sells used books. I'm sure there are many others that carry reliable foot charts too.

 

****Name: Gregory
Email: vision5@hotmail.com
City: Burlingame
State: CA
Country: USA
Date: 04/20/2003

I have TN for 10 years. I had remissions but most of time have pain:burning, stabbing, electrical shocks. I learned to live with pain and to enjoy the life. I am 57 have 4 kids and one grandson. My youngest son 10 month old. I have never given up to the pain. I was treated by different dentists, in UCSF, Stanford, Pacific Dental School seen different oral surgeons. Just recently I found through Internet information about surgeries performed by neurologists. It is amazing that non of the dental doctors ever referred me to neurologist.For all this years I found that Vodka control the pain. I found that if you wash your mouth with hot yellow Listerin many times a day it really helps. I got this advise from the guy who is suffering from TN for many years and recommend you to try it immediately. Then have in mind that only the dead person have no pain at all and you are alive so be happy. Thinking positive will help.

 

*Name: Mark
Email: vosm@eznet.net
City: Albion
State: New York
Country:
Date: 05/15/2003

Hi Everyone,

I have been a sufferer of this condition for about ten years now. I started out on a regular routine of Tegretol about five years ago. (Before that it was very sporadic, came seldom, and was constantly misdiagnosed.) I started out on 200 mg. twice a day and quickly progressed to 400 twice a day, then to 600 twice a day. The tegretol made me extremely sleepy and almost destroyed my short term memory, so my Doctor switched me over to Trileptal. This was much easier on my memory and the periods of sleepiness were much shorter, but still, some days it was intense for a half hour or so after I took it. The trileptal was effective at pain relief, but the effect did not last as long as the tegretol. I had also tried the neurontin but it was no where near as effective as the other two. Even so, my condition degenerated to where I was taking up to 1800 mg a day of trileptal and still was not pain free. The monster attacks were held at bay, but there was the constant painful jolts from the wind hitting my face, brushing my teeth, shaving, washing, etc. etc.

My neurologist finally suggested gamma knife surgery. I went to consult with the neurosurgeon and he said I was to young to go that route. He said to go with the micro-vascular decompression. (I know, more money in the doctor's pockets ! ) Anyway, I had surgery on the 21st of April and at this point, I have been completely pain free ever since. I know there is always a chance of relapse, but nothing is ever for sure. Just being able to wake up in the morning and not have lightning bolts pulse through my head every time I blink my eyes is something only you fellow sufferers out there can understand. Being able to brush my teeth, wipe my nose, wash my face, stand into the wind, what a blessing it has been.

Don't give up, there's always something that will work. I've been three weeks into it, and I'd do it again. My head is sore where the surgery was done, but it's nothing like the nerve pain. They used Teflon sponge to pad the nerve bundle, and they placed a ceramic plate over the hole in my skull. I your doctor offers this option, give it serious consideration.

Mark

 

**Name: Geri
Email: ganehls@yahoo.com
City: Poynette
State: WI
Country: USA
Date: 07/03/2003

I want to give all of you hope!! Dealing with pain is hard. I had a mastectomy January and pain is one of the things a person sometimes has as aside effect when cutting into your body.

I suggest that: You'll want to look at glycoscience.com Type in "nerve damage or pain". Read the science. PS you DR will probably not understand this new science. MIT does : So do those in Science Discoveries- It's too new for your Doc's. We have DRs who will give more info on this new science around the world If you want more info contact me and get you in touch with them. You see it is "pay it forward" for me since I was helped! Geri Nehls mannatech associate ganehls@yahoo.com 608-279-8267

 

*****Name: Jane
Email: janerg@mo-net.com
City: Aurora
State: MO
Country: USA
Date: 08/02/2003

I've been here before but have to share my story again. This is my 13th week pain free from TN. Last November I began acupuncture treatments. After about 3 weeks I began noticing a difference in the pain, and it just kept getting better and better. In May my wonderful acupuncturist suggested I try CranioSacral Therapy to try a different alternative to what she was doing. I was lucky enough to find a wonderful DO that does this treatment and she is helping me, also. She has discovered that my 2nd & 3rd rib and my shoulder are way out of line which she thinks caused the pinching of the trigeminal nerve. Cause: cradling the phone between my ear and shoulder. She sent me to physical therapy for a month and I continue those exercises. Tomorrow begins week 14 pain free!!!!! After 1-1/2 years of ungodly pain, acupuncture and CranioSacral Therapy have been the answer for me. Those two women saved my life!!!! I would be happy to answer any questions that anyone might have for me about this. I know it works, and there is an answer out there for you!! Don't give up!!! Good luck!!!! Jane

 

***Name: Lezlee
Email: LesMillion@aol.com
City: Woodville
State: TX
Country: USA
Date: 10/26/00

To those who suffer from this horrible pain, I want you to know that I have found a noninvasive way for pain reduction or relief. It is called the Rhode Stim machine. Email me or see my website at wizmo.com\atypicalfacialpain. I am not being pain for this information.

 

****Name: Norm
Email: nnacctg@xmission.com
City: Park City
State: UT
Country: USA
Date: 12/07/00

I previously wrote on 5/1 00. Since then, a lot has happened. In mid-May, my TN came back with a vengeance. My prescribed dosage of Tegretol and Neurontin were barely adequate. In early June, I started getting nerve blocks, which did help some. In late July, I had the last blocks. Three days later, all the blocks seemed to disintegrate (or whatever they do) at once. When I finally got to my neurologist he increased my dosage of both Tegretol and Neurontin by 50%. At the same time he referred me to a neurosurgeon. I was having severe pains, could not chew on the left side of my mouth, and could not even brush my teeth without causing spasms (the spasms were absolutely the worst part of this. I was having two to four a day for almost two months). Often I had problems talking without severe pain. The neurosurgeon saw me in this condition and immediately said he would perform surgery. Subsequently, the increased dosage of meds did help to a degree. Because of my work requirements, I was unable to have surgery until Nov. 1.

The doctor found what he called a typical case of TN; at the point where the nerve exits the cerebellum, there was a small artery that had wrapped itself tightly around the nerve. It took him an hour just to unwrap the artery. Then he straightened it out, put in the Teflon pad, and completed the operation.

When I woke up, I felt the back of my teeth with my tongue, and knew that it had been successful. One day in ICU and one more day in the hospital and I went home. I actually spent a couple of hours in my office the following Monday.

Now it is 5 weeks since the operation. I am 63, and have had absolutely no TN pain for the first time since I was 50. I was back to a full normal schedule by 11/13. It's WONDERFUL. I am now weaning off the meds, and will be done by the middle of January.

I heartily recommend this procedure to anyone who has suffered for a long period of time. A good neurosurgeon will not perform it until it is obvious it is beyond control by medication.

I welcome comments or questions.

 

*****Name: Kathie
Email: dkazmitchell@aol.com
City: Tucson,
State: AZ
Country: USA
Diagnosis:  Trigeminal Neuralgia
Treatments: Lifestyle changes
Comments: It Worked!!
Date: 03/29/01

My experience with TN began well over 3 and a half years ago. I suffered with the pain for several weeks before I finally broke down and went to my dentist, as I thought I had a dental problem with a crown. He took an x-ray, said there was nothing wrong with the crown, but suggested that I probably had TN. I came home, looked it up in my medical book, and, sure enough, it described my situation precisely. I then made an appointment with a cranial therapist who was very good at helping me with the stress that accompanies TN, but she could do nothing for the pain. She referred me to a neurologist who said that indeed I had TN. He said that if the pain got really bad, that I should go to the emergency room, and ask for a Tegretol drip. After reading the side effects of Tegretol (liver damaging, amongst other things!), I decided that I had to find another way to get well. It was about this time that I read an ad for a lecture by a doctor, an orthopedic surgeon, who had survived a severe advanced case of breast cancer. The ad explained that she had done it through natural means. This intrigued me, so my husband and I attended the lecture at a Natural Choices Expo. Dr. Day started her lecture by saying, "This is soooooo simple!" Every single word she said made so much sense! She explained that this 10-step Plan that she devised to get well from breast cancer, could be used to get well from virtually every disease! She had my attention! My husband and I came home from her lecture, went through our pantry and refrigerator, and got rid of everything that was not going to be good for our new lifestyle. Almost immediately after starting the new lifestyle, my TN pain was gone! Praise God!! At that time, I did not know there was a correlation between TN and digestive disorders. Then, late one night while e-mailing others with TN, I started to notice how many of us not only suffered from TN, but most of us had digestive disorders. I then, accidentally, ran across a website that explained that gluten in wheat products, and casein in dairy products, damages the small intestine leading to demyelination of the nerve sheaths. Those 2 things, gluten and casein, are the most mucus-forming substances that we can put into our bodies. I had already eliminated dairy, but I now eliminated all wheat products, and within 3 months time was completely well! Praise God!! I was so focused on getting well from TN, that I hadn't even noticed that my arthritis was completely gone, too! My husband's allergies had disappeared, too, and he had had allergies as long as I had known him. We both have never felt as good as we feel now. Anyone can do this by becoming a vegan, and drinking lots and lots of purified water. At our house, the rule of thumb is to "eat as close to nature as possible". That means that we eat almost all of our food raw, as cooking destroys the enzymes that are needed for proper digestion. We drink purified water a half hour before we eat, or an hour after we eat, as we do not want to dilute the digestive juices needed for good digestion. We also drink purified water several times during the day. We exercise, get plenty of sun and fresh air, also plenty of rest, and try to reduce our stress. It is also important to give thanks to our Creator for our good health, and have an attitude of gratitude. Benevolence is another step in the Plan. I have been completely well for more than 2 and a half years! Praise God!!

 

**Name: Josephine
Email: josie_gervasi@msn.com
City: Roseville
State: MI
Country: United States
Date: 08/17/2003

I have had TM for over 22 years. I am on a combination of drugs which helps. I would be happy to communicate with anyone that suffers with TM through this website.

 

**Name: Estelle
Email: vfmay@clicksouth.net
City: Union City
State: TN
Country: USA
Date: 08/06/2003

I've had peripheral neuropathy for 15+ yrs. Late 2001 I started having pain in neck and face. I've been taking Neurotin for 10 yrs now for PN but it hasn't helped TN. There are days I can hardly function at all. Recently we went on a trip to a higher elevation and would you believe for ten days I was pain free. As soon as we returned to a lower elevation the pain returned with a vengeance. I need help emotionally and mentally.

 

**Name: Cinde
Email: cin1cin@aol.com
City: Los Angeles
State: ca
Country:
Date: 08/18/2003

I posted here in January, after I had the decompression surgery by a well known TN doctor at Cedars Sinai Hospital in Los Angeles. Unfortunately, I had damaged done to the 3rd cranial nerve, which caused pain on the whole left side of my head. I started back to work and any stress caused the pain back in my left eye, face and teeth, which by the way all have had root canals or have been pulled. I was on Tegretol, but I see a specialist on TN at UCLA - Oral Facial Pain Center, who switched me to Depakote (Valproic Acid), which removed the side of the head pain and some of the eye, teeth & sinus area pain. I now am on 1100 mg. of Depakote. Still any stress and cold causes the pain to come back.

A friend of mine also had TN and had the MVD surgery - now no pain but facial numbness and loss of hearing. She forwarded me a news issue from the Trigeminal Neuralgia Assoc. support group - web: www.tna-support.org. They have many interesting articles with the new medications and developments for the pain.

I hope this support site is helpful.

 

*Name: Lisa 
Email: Private
City: Byron
State: MI
Country: USA
Diagnosis:  Trigeminal Neuralgia
Treatments: all kinds of meds and  surgery
Comments: fed up with the pain and meds and surgeries
Date: 08/21/01

I have been experiencing facial pain for 6 1/2 years now. I had to undergo physical therapy for 6 months after injuring my neck,arm and shoulder. Right after I finished therapy I began to have facial pain that lasted up to 2 weeks at a time {every month}. My doctor claimed that I was just depressed because I sat in his office and was crying and half laughing because he could not figure out what was wrong with me. He then prescribed Elavil for me. I did take it and in the meantime have been through doctor after doctor and dentists and oral surgeons {as many of other people have claimed}. I did not let the dentists pull any of my teeth or talk me into any root canals as they could not be certain that this was the cause of my problems. My new doctor referred me to a neurologist only because I kept going back to him and complaining of my face pain. The neurologist tried all kinds of meds but to no avail. I kept going back to him because I was still in severe pain. He finally sent me to a neurosurgeon, who claimed that I had TN. Therefore I underwent the mvp surgery and had relief for 1 1/2 years now. The other day I began to experience short bouts of the pain again. This started after I began to have neck and shoulder pain again. I became depressed so I hopped on the internet to research to see if anyone else had a reoccurrence. I found out enough to discourage me plenty! I thought to myself that there must be some connection between the neck and face pain. I did some more digging and came up with a site called NACUCC (National Awareness Campaign for Upper Cervical Care, Inc.) that many of you may want to check out. Although it may not help everyone, it may help some of us. I have not been to a doctor yet, but I am going to check it out. It sounds as if we are all having surgeries on the wrong areas—head vs. neck. The nerves associated with the neck are in relation to the trigeminal nerve, therefore this may be what the whole problem is!!! Since I am starting to get the face pain back I plan on checking this out. God bless everyone with this condition and may we fight back and finally get some relief!! The web site that I visited is www.uppercervical.org in case anyone would like to research the topic. Thanks sooooooo much for everyone,s input and stories of their face pains. Lisa

 

***Name: margaret
Email: Private
City: sydney
State: n.s.w.
Country: australia
Diagnosis:  Trigeminal Neuralgia
Treatments: tegretol;dilantin;laser acupuncture;capsaicin;neurontin
Comments: Learn all you can about T.N.
Date: 08/20/01

ALLERGIC REACTIONS TO TEGRETOL AND DILANTIN SAW ME TURNING TO ALTERNATE THERAPIES IN ATTEMPTING TO BECOME PAIN FREE. I FELT LASER ACUPUNCTURE WAS THE ANSWER INITIALLY - YES - 12 MONTHS RESPITE AFTER A SERIES OF TREATMENTS. BUT SUBSEQUENT ATTACKS WERE LESS SUSCEPTIBLE TO THIS METHOD OF RELIEF. THEN CAPSAICIN SEEMED TO HELP. I STILL USE IT 4 TIMES A DAY, TOGETHER WITH NEURONTIN. MY PAIN IS CONTROLLED. WHEN THE PAIN BECOMES INTENSE I SHALL HAVE AN M.V.D.FROM THE BEST NEUROSURGEON IN SYDNEY. I HAVE CAREFULLY RESEARCHED THIS CONDITION AND THE VARIOUS TREATMENTS AVAILABLE.

 

***Name: "Jojo"
Email: Private
City: Mahopac
State: NY
Country: USA
Diagnosis:  Trigeminal Neuralgia
Treatments: neurontin; cold laser, magnets
Comments: neurontin worked but put me to sleep all day;
Date: 06/22/01

Alternative medicine is helping this painful condition with reduction in shootings in my face by cold laser. I use a strong cold magnet on the top of my scalp where the burning is radiating. acupuncture laser reduces my carpal tunnel symptoms also. Neurologist very helpful and surgery is not necessary.

 

Name: Lisa
Email: lisa.c.lund@us.arthurandersen.com
City: South Elgin
State: IL
Country: USA
Diagnosis:  Trigeminal Neuralgia
Treatments: Amitriptyline, Tegretol
Comments: scheduled for Radiofrequency Rhizotomy 1/16/01
Date: 01/04/01

About 15 years ago, when I was 26, I started having occasional sharp, stabbing pains in my lower right jaw area. After a couple of years it became bothersome enough to go to the doctor. He sent me to an oral surgeon for x-rays to rule out anything else, then diagnosed it as trigeminal neuralgia and prescribed amitriptyline. That kept it pretty well under control for several years. I had occasional flare-ups that could usually be controlled with Tylenol. Then last Spring it flared up really badly, so I went to my doctor and said I'm ready to do anything to get rid of it (I've also started having some pains in my cheek). He sent me to a neurosurgeon at Rush-Presbyterian-St. Luke's Medical Center in Chicago, who prescribed Tegretol. It's been working okay, but I am trying to get pregnant, so I can't be on Tegretol. I am scheduled for radiofrequency rhizotomy in a couple of weeks. I am feeling pretty positive about it; I wasn't looking forward to being on Tegretol for the rest of my life. I guess mine is somewhat atypical in that it doesn't seem to be triggered by anything, and while it's painful enough to bring tears to my eyes at times (I call those "cattle prods"), it's not as severe as what I've read others have suffered with. I'm interested in hearing from others who have had radiofrequency rhizotomy.

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. . . . . .Then one day the doctor told us of a new medication that might help. The doctor and I quote,"it's like discovering America!". So my husband got a free 30 day supply and it was the best thing he never felt!!No more pain!!!!!!! The medicine is called Trileptal. It's made for people who are allergic to Tegretol. Now he 's his old self again. He's eating normally and enjoying life. And like the doctor said"It's like discovering America!!",and it is!

 

**Name: joy
Email:
City:
State: VA
Country:
Diagnosis: Trigeminal Neuralgia
Treatments: glycerin rhizotomy
Comments:
Date: 07/24/01

I have suffered from trigeminal neuralgia for 3 1/2 years with no relief from medications. When it became unbearable I underwent a glycerin rhizotomy at Johns Hopkins University in Baltimore.Dr.Ben Carson was the surgeon. The surgery was 6 days ago. I am now completely pain free. My only regret is that I did not have this treatment earlier.




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