The following is from HealthBoards "Posting Policy".
Do not suggest internet searches or post anything about freebies, forums, chatrooms, message boards, websites, webpages, blogs or any other kind of commercial business or internet contact, whether or not you personally benefit:
Websites with forums/message boards/chats are not allowed.
Please read and follow HealthBoards Posting Policy. Thanks
Wanda Lu: Please don't say that the vds does not work. As I posted ealier in this thread, my sister had it 9 years ago and has done wonderfully ever since. At that time, the TN Clinic at Presbyterian Hospital/U of Pittsburgh where she went had over 800 patients and about 500 were not candidates for the surgery due to other conditions, other treatments that they had that made them not a candidate for vds, age, etc. She also volunteers with the TN Association, counseling others who have this awful condition and at various meetings (AMA, etc) that come to her her town (she lives in New Orleans so they get a lot of conventions). There is a surgeon here in Birmingham who studied under Dr. Genera (sp?) who invented the procedure and he has operated on several people I know here who have had the condition. All were successful. I know one person who had the Gamma Knife procedure and it did not work. Just wanted to share my personal experience.
Wanda Lu: Please don't say that the vds does not work. .
Thanks Titchou. I apologize. While I have not done any of those procedures I have read where some 40,000 Trigeminal Neuralgia, Glassophyrengeal Neuralgia, Occipital Neuralgia and other Facial Nerve Pain people have currently stated their experiences and that is what I had discussed with my Doctor. It is good to hear that your Sister had a most excellent experience and that it has lasted her. I believe there are also implants that can be done as well as the various medicinal treatments. My Dr stated that there are apparently several types or depths of these diseases in that some come and then leave, some come and go, and some stay in some form and work its way up the chain.
For myself, I am now finding that sweat is one of the most horrific feelings when produced in the area on the left side for me. The seizures are completely different than those previously felt and my tegretol is not strong enough to stop them. So much for living in Florida and trying to do anything outside. For myself, I have the cold sensitivity on the left side along with the "allergic to the wind" which appears to be very commonplace.
And she said she knew the surgery had worked on the way back to her room from receovery because cold air from an AC vent blew on her and it didn't hurt. She's a natural blond so now I kid her about having a "hole in her head" too!
My TN started about 5 years ago with very light and short episodes. I most frequently felt them in the shower when a light mist hit the right side of my face. It was a short -- maybe 5-10 seconds at most pain and very managable. This would occur 2 or 3 times a week for a month or so then would disappear completely. It was no big deal and was more of a "I wonder what that was" type of condition. Then last summer, I had some dental issues (legitimate) and noticed increasing pain and length of attacks from what turned out to be TN. I noticed that if I touched a certain place on my gum with my tounge, the pain would go away or could be prevented after a little while. The dentist sort of brushed this of as being something that tooth decay can cause and did the needed dental work and I had some additional legitimate dental work done. After the dental work was completed, and while I recovering, I started getting renewed pain with origins at the same place, except the point was now more sensitive than ever. Several things the dentist did helped for a few days, then teh pain came back. I followed the dentist's recomendations -- rinsing the mouth with salt water, etc. -- and things kept getting worse. When I went in for some follow-up work, the dentist could not control the pain even after injecting 7 shots of novacaine, and he had to stop preiodically whenever I had an attack. Finally, he said he wondered if it was caused by TN. That as the extent of his interest in TN, but I got him to refer me to a neurologist who confirmed the diagnosis. I started on 200 mg Tegerol per day and I thought I had found a miracle drug. I was event free for almost 2 days. When pain returned, the neurologist upped my Tegerol to 400, with similar results. This went on for 600 and then 800. At this time, the nerologist added Baclofen 20 mg per day. This worked for a week or so, then the pains came back. The Baclofen was then upped to 40 and finally 60 mg per day. I also was put on taking my meds 4 times a day like clockwork, meaning I needed to get up at least once during the night to take meds. I went to the Cleveland Clinic, which re-evaluated my condition, and who upped my Tegerol immediately to 1200 mg of Tegerol, then after 2 weeks increased my dose of Tegerol to 1600 mg. This combination 1600 mg Tegerol and 60 mg Baclofen daily kept me pain free for 6 weeks, but I was clumbsy, dizzy sometimes, and had trouble thinking. I also wanted to sleep a lot of the time. My neurologist cut me back to 1200 mg Tegerol and 45 mg Baclofen daily a couple of weeks ago. Last night I had the first attack in 8 weeks -- not as bad as the ones I had before, and not as painfull, but unexpected and none the less scarry. On the lower dose, I was not as clumsy, never dizzy, and able to work 6 hours or so a day without incident. My liver enzimes have skyrocked and both my family doctor and the nerologist want me to keep on the lower doses -- assuming one of the two medications used was messing up my liver. I know that other medications may be used, and I am looking into surgerys. The trigeminal nerve on the right side is completely wrapped by a major brain blood artery, so microvascular decompression has been suggested, but I am curious if success (both from pain and risk of surgical death) are more or less likely when a major blood artery is involved
In my sister's case, the arterial loop was pressing on the trigeminal nerve. They moved the loop out of the way, tacked it in place and then separated all the nerves in that group. They wrapped the trigeminal nerve with a teflon like material. All has been well since. I hope you get your situation resolved soon.
I was sad to see the amount of medication you had to take, and my heart goes out to you. I chose a non-medication route and had the Gamma Knife with success for over a year. The pain has returned somewhat, but nothing like before.
I love the results Titchou's sister had. If necessary, I will go that route.
Medication is just not the answer. We have a wonderful life to live, so check on the Gamma Knife (non invasive procedure) or review Titcheou's report with your doctor.
Folks, it is nice to be able to have communication with this very rare condition. I'm fortunate to have friends who understand and have been my supporter (& coverer - if there is such a word) for all these 17 years.
I was assualted in 1988 and have been in pain ever since. They found that my trigemental nerve cluster was injured. I was 29 at the time they told me then that the surgical route would only give me a 50 - 50 chance of surviving. I have been on ever increasing amounts of strong pain meds ever since. I am currently on MS Contin 100 mg and MSIR 30 mg. I am interested in the gamma knife procedure. Is there anybody out there who has had it. Did your pain go away. was the procedure a major operation and what are the side effects.
I am real tired of taking pain meds and they do not take but only a little bit of the pain away.
I was recently diagnosed with atypical trigeminal neuralgia. I have been suffering from constant pain for nearly 5 years. All in all, I've been suffering from the shock-like pain for ten years. I believe my TN morphed from classical to atypical because of a lack of treatment over time. I was always told I was suffering from migraines and was previously misdiagnosed with cluster headaches.
Does anyone else here have atypical trigeminal neuralgia (TN2)?
I self diagnosed the Trigeminal Neuralgia I suffer when no doctor could. I spent almost a month in absolute agony, in and out of the ER, sobbing in pain, ENT specialists, walk in clinics, family doctor ... you name it. I lost 40 pounds in that month because I was unable to eat without throwing up, the electrical shock pains were that bad! It was as though I was being struck by lightening.
In desperation, during a lull in the pain I researched my symptoms and discovered some TN chat rooms. One post seemed to scream out at me when the poster mentioned how Chiropractic worked for her so I immediately went to my chiropractor ... one adjustment relieved about 80% of the pain, a subsequent adjustment took away the remaining 20%. Yippee ... !
After about 6 weeks my diagnosis was later confirmed by a neurologist who did an MRI and Evoked Potential Testing along with some other tests. He said I had TN that responded favourably to chiropractic. But of course by the time of his diagnosis I had, along with my chiropractor relieved the pain. Stupid **** did nothing for me he simply conferred with me and passed me back to the family doctor. No distinction on what type of TN it was, no recommendations ... nothing!
Notice I don't say MY TN ... to do so would cement the condition into my mind and make the TN who I am rather than a condition that has affected me so I prefer to say the TN I suffer from).
Fortunately this condition responded favourably to chiropractic treatment; I believe chiropractic adjustments relaxes the muscles, etc. around the trigeminal nerve(s). Occasionally I get flare-ups and a series of subsequent adjustments as well as acupuncture help keep the pain at bay.
However I now feel the need to find an accompanying modality to assist with these two (chiropractic & acupuncture) so the original intensity doesn't return. I tried a modality called Bowen which has worked very well for me in the past for other conditions but I think the practitioner I went to wasn't as good as the naturopathic doctor I used to go to is and it did nothing for me.
I am now going to try low intensity laser therapy. This worked well when I suffered with the sciatic nerve in my buttock, hip area so I'm hopeful that it will work well for the TN. From what I've read this modality (Low Intensity Laser) is a recommended treatment for Trigeminal Neuralgia (as well as Fibromyalgia which I also suffer). I am taking morphine and Percocet (Endocet) for the Fibro but as we all have found out ... no medication will relieve the pain of Trigeminal Neuralgia.
Wish me luck folks . . . ! I'll keep you posted.
Thoughts become things, choose good ones.
H Dream. Hope all is well today.I had a few injection in my head back in june. I only stop the pain for a little while. Now the doctor put me on another medication I turly hope it workd also he put me on bed rest for 5 days.
The pain doesn't stop for too long. OMG I hate it..I have had TN for almost 5 years now and my regular doctors never dx me..Horrible pain as I am sure only a person that has TN can relate too..I do not know why I have it..if there is underlying condition causing it or whatever..Waiting on MRI to come back and see if anything shows up...I understand about the Dilutin..works pretty good, don't know why they just don't perscribe it for TN? ..I have been to several Dr's..no answers.. I went to ER several times..no answers..One night it was so bad,and I ended up in the ER yet again this time a Doctor one call actually knew what it was and explained it to me and gave me 2 shots of Dilutin..Felt pretty good that night ...till it wore off!..It is almost 8 am here and I am still up because of the pain in my face..I hardly ever sleep..yet when I am sleeping I do not feel it...It's just being able to go to sleep!...I wonder how others feel the pain and spasms..if they feel what I do or something different?
I have had it one the right side of my face for 4 years and this year it appears on the left side also at times but not at the same time as I have it on the right side...weird..anyhow with my 'attacks'..my whole face seems to move in all wierd ways up and at times it cuts off my breathing and really scarey if I am eating and it starts because you could choke...
Many times I have actually put the metal side of a hammer to my face or whatever type of object is close to me to create my own pressure as to think that I am in control of it...I wonder what others do to try and help the pain and twitches and pressure?
The only meds I have been on it are the Dilutin when at ER and I take Neurotin..
I am not a suicidal person..I love my life and have family and great friends who are there to support me the best they can..I read it is called the 'Suicide Disease'. And I could understand how a person could do it you know...I mean I really don't think if a person had TN and ended up going that way that it would be intentional...Doctors do not do enough tests or figure out what it is..And give meds that will work..So maybe one night the pain is so horrific that you just take one too many of something to try and ease the pain and you die..I don't think that person would want to die..just escape the pain for a little bit...I really don't know what I am trying to get at with this except that I could understand the situation..Because myself I am not a drugie...But in reality I have taken a few hits of a joint here and there...I do not like the feeling of being 'High'..but it is actually the only thing I have tried that does ease the pain for awhile and afterwards I do not feel the pain,pressure or spasms for about 3 days...But hey I am NOT recommending this to anyone out there..just stating what I have tried to ease the pain...Has anyone found anything that helps take the pain away...that is an over the counter kind of thing that a person could take or try when Doctors do not seem to want to help?
Anyhow I am glad I found this spot on here because I am 43 and know alot of people but I do not kow anyone else who has TN or really even heard of it, so I am glad I found a place to hang out with people who understand what I go through almost everyday.
Thanks for letting me join in....
Last edited by dwainright; 01-05-2010 at 07:00 AM.
Hello, 9 month ago I went to the doctor because the right side of my face was killing me so they pulled out my teeth. MISDIAGNOIS the pain got worst only to find out I had TN. now I get sharp icepick pains in the left temple. I hope they fine a cure soon
I had a Gamma Knife procedure 5 years ago and I'm just starting to have those bad feelings again. My teeth are burning but no shocks yet. Tegretol worked great for 6 months then just quit working. I hope you find some relief, I know how hard it is to live with the Beast. Best regards, Mark
I was told I couldn't have a second GK because I got facial numbness from the first one. It can cause eye problems and even make it worse. I will probably opt for the MVD if it ever comes back. Good luck, Mark
I posted on this thread in November 2009 and want to give everyone an update.
After having my TN pain return in November, I went back on the full regiment of 1600mg Tegretol and 60mg of Baclafin a day, spread out over 4 evenly spaced doses. I was so frustrated at this time by my neurologist. He was obviously a very religious man, which I normally admire in a person, but he took his religion to the point of not working on holy days (even when he was "on call"). Twice I felt I needed to get my medicines changed and was unable to talk to him when I needed to, and since he was the doctor "on call" none of the other neurologists in the practice would answer their phones either. My wife actually had to threaten him, through the medical society telephone referal system, to get him to respond, and then he was very very hostile for bothering him on his sabath or holy day. I wisely found another neurologist at a different practice who was able to see me and take over my case.
There was no give or take in my medications, I needed every mg I was prescribed. Missing a single dose by even an hour would cause the pains to return. I would need to plan days in advance if I needed to change the times I took medicines, so I could shift my schedule not more than 30 minutes each day. My liver enzimes were skyrocketing and finally a third medicine, gabapentin was added. I was a total zombie by this point, fortunately free of my TN pain, but barely able to stay awake. I was also very clumbsy, fell easilly, and eventually needed to use a cane to help when I needed to walk. Even simple tasks like typing or loading the dishwasher were major in my diminished capacity.
On a typical day I would get up, eat breakfast, then take a nap. When I woke again, it was lunch time. I generally was able to stay awake a couple of hours after lunch and usually watched TV or read a little before my afternoon nap. When I got up again, it was evening and I would eat dinner, watch a little TV or read, then go to bed again. I would need to get up at least once in the night to take my medicines. I wouldn't remember what I read or saw by the next day, and sometimes re-read things. TV show that were reruns which I had seen before seemed only vaugely familiar in a deja vu type way.
The Christmas holiday just sort of slipped by -- I know I opened a few presents from my wife and family, and watched others open their presents, but I can not remember much else about it. I was unable to shop for anyone but had a relative pick up presents for my wife and others. I do remember getting up to see the ball drop for the new year (2010), but I can remember few other events that winter. Eventually, my neurologist started backing down on the Tegretol, and I started to gain some short term memory and be able to think more clearly again. When I got back to 800mg of tegretol, I was still very tired, but at least able to think.
I started to study, in earnest the various surgical options (the neurologist felt I should wait and see if medications could control the pain, but after already spending 6 months of zombie like life, and never knowing if an attack was about to occur, I was ready to try something else). I spoke with my family doctor (who reccomended Gamma knife done locally), a family friend who was a vascular/general surgeon who had performed several surgeries on my wife (who voted for Microvascular Decompression or MVD) and I studied everything I could find on the internet. I also took out the TN books from the local medical school library. The more I read, the more I thought MVD was the best approach for me. I checked the local surgeons. All said they could do a MVD but only one had actually done one before. Pittsburg was a possibility, but my insurance would not cover a trip to an out-of-state clinic even though it was closer that where I finally went for the surgery.
I was particularly impressed by the Cleveland Clinic and the work of Dr. Lee. His practice was limited to brain stem and other "lower brain" surgeries, and he had an impressive resume of research papers and two text books he had written on surgeries in that area of the brain. I got copies of his books and papers and read them cover to cover -- over 1000 pages in all, and started to understand the process of the MVD surgery, along with the risks and complications. I was sold -- MVD it would be, and Dr. Lee was who I wanted to do the work.
It took until June for me to get my MVD surgery. There were many issues which prevented me from going earlier. First was getting my liver enzymes in check -- Dr. Lee did not want to do the surgery (and my primary care provider did not think it was wise to have the surgery) until the liver enzymes we back to a more normal level. Then there were scheduling issues and issues with insurance (complicated when my group coverage changed from one insurace company to another).
Finally I got my surgery on June 25th. I actually had improved on the medications with the reduction of tegretol and addition of gabapentin, but was still tired much of the time. I did return to work for a month or so before the surgery, putting in 6-8 hours a day in an office environment.
Everyone was surprised at how calm I was about my surgery. The clinic scheduled a day for testing, blood work, etc. before the surgery and everything was fine. They told me to get to the hospital at 8:30 AM the next morning. I was prescribed a sedative I could take the evening before, but I was very comfortable and fell asleep and slept well.
I got up the day of the surgery relaxed and walked with my wife and daughter the two blocks from our hotel to the building where the operation was to occur. I checked in, and was promptly prepared. The nurses and anesthesiologists were amazed that I did not need any pre-surgery drugs to calm me down. They rolled me to the surgical suite where I was able to meet members of the surgical team as we waited for my surgeon to complete another operation. They showed me some of the equipment they would be using and we discussed other topics. My surgeon had insisted on having the best of the anestheiologists work with him, and we talked quite a bit about how things had changed for him over the last 25 years. Other members of the surgery team seemed equally top-notch, and surprisingly friendly and all commented on my being one of only a few brain surgery patients who could make it this far without the need for any sedatives.
Eventually the doctor showed up, and after discussing things with me a little longer, I was ask if I was ready to be put under. I was, and within a minute drifted off into some type of "sleep". I don't remember anything until a nurse called my name and told me to wake up. I was in the recovery room. I knew I had been under the knife, and ask what time it was 2:30. I had been in surgery since 9:30. I had a very dry mouth so they brought a stick with a wet sponge on it to moisten my mouth. Almost immediately, they brought me a lemmon lime soft drink and some ice. I was feeling no pain.
After an hour or so, they sent me up to a room where I would spend a couple of nights. My family was there, but soon after I arrived the nurses kicked them out telling them to get some rest. I think the surgery was harder on them than it was on me. I had few symptons other than a "Crick" in my neck that would not go away. It took almost 6 weeks before I finally got rid of it. I do think that they should have tried harder to solve this problem which is common to many lower brain surgery patients. Perhaps heating pads, massages, or other means could be used to help.
They also had wrapped my whole head with a turbin like bandage, which was uncomfortable and hot. I was hot to start with since my roommate was always cold and the turbin just made things worse. I was having some double vision, which they said to expect.
The nurses propped me up in a sitting position and I ate some dinner -- soft stuff that didn't appeal to me that much (it was after all hospital food!) I did feel a little sick to my stomach, and they gave me something to help with that. I watched some TV, feeling proud that I was guessing the correct answers on the quiz shows. "I guess my brain is still working," I remember thinking as I answered the questions. The nurses tried to get me to go to sleep, but I was too uncomfortable to sleep. They would not let me lay flat on the bed, but made me sleep half sitting up -- they wanted to keep my head above my heart, but nobody explained that to me until the early hours of the morning. I also had a noisy roommate who was in a lot of pain and kept making noises which kept me awake. At the same time, he seemed hyper sensitive and would complain through his parents if I had the sound on the TV too high. I did listen to some CD's using ear phones. I wonder why the hospital could not have an earphones compatible outlet on the bed? Eventually the nurse gave me some morphine which helped me with the neck pain and to get some sleep.
The first day after the surgery, I ask to have the urinary cathitor removed and was able to sit up and spend part of my time in a chair. Food was looking better, but I still ate lightly. I was able to go to the bathroom, and by evening was wandering the halls with my wife in tow. I has some numbness in my face which was predicted before the surgery, but it was manageable -- much like a shot of novacaine after dental work. The next morning, they took the bandages off my head then released me from the hospital. I was back at the hotel room with my wife by noon. We had decided to spend the first night at the hotel rather than try to make the drive home the same day I was released. We ate at the hospital dinning room (better than patient food) and also got food from the hotel restaurant.
I still had double vision the next morning when we drove 4 hours back home. At first it bothered me and I tired to cover one eye or the other to stop it, but then I realized how much fun it was to see cars driving through semi trucks and other optical illusions associated with the double vision. The double vision lasted to some extend for a couple more days, and I sometimes would wear an eye patch which made reading or watching TV more enjoyable.
The fourth day after the surgery, I was feeling well enough to go out to dinner, and the fifth day, I was up to doing a couple of little odd jobs around the house. My wife and I went to the building supply store where I got some new locks we had wanted to put on for some time, and I completed the job in short order. I was still somewhat tired but my medications had been immediately reduced to 1/2 of what I had been taking before, and over the next month or so, reduced to no medications for the TN.
A week after going to the hospital, I was able to return to work on the same 6-8 hours a day schedule I had been on previously. Everyone said I looked good, and maybe I did, but I know I was more alert and able to concentrate better.
It has been 7 months now since the surgery. I still have some numbness, and still tire easilly if very active, but have no other side-effect and no TN pain. I am back on a more or less normal sleep-wake schedule, am able to eat normally, and am basically enjoying life again. I have been told that the numbness may never go away entirely, but being numb is not as bad as putting up with the trigeminal pains.