Raquel did u have type 1 or type 2 tn?
raquel drumb said:
My MRI came back clean but when I had my MVD, they could not believe how much the nerve was damaged and how many places I would need the teflon/felt. I have not met anyone with this illness that had did not have something touching the nerve. I had so many veins, etc. wrapped around my nerve so it was amazing that none of this showed up in an MRI.
Sheila what causes the TN in people where there is no nerve compression found during the surgery? Does it mean the nerve has been damaged along the nerve path somewhere? If your pain comes and goes in and out of remission is this a sign that you do have a nerve compression?
Elstep,
Your pain can come and go with both Type 1 TN and Type 2 (Atypical). Our own Jujubeee started a blog where she puts information she keeps finding about various causes of TN and other cranial neuropathies (nerve damage of other nerves on the skull) at http://whydoihavetrigeminalneuralgia.blogspot.com/ . Then when I was looking at the WHO (World Health Organization) website the other day, I found at least 10 other suspected causes. TN has been reported with hypothyroid, vitamin B or vitamin D deficiency, whiplash, shingles, infection in the area, and many more conditions. Yes you're right, the nerve has been damaged in some cases, but sometimes it can be healed if it's a vitamin deficiency or if the hypothyroidism is treated. My grandmother and mother only get/got TN pain when their thyroid was acting up. Seems that was their sign to go get checked and get some thyroid medicine, then it would settle down.
Elstep and all,
Here is a nerve chart that shows the spine's nerves and which areas they control. http://www.echiropractic.net/nervechart.htm. If you look at the top 2 shaded areas, it shows all the parts of the skull, the face, the throat, the thyroid, etc. I know that Red Lawhern disagrees that this could be a cause, but I'm hoping he will not shut that out as a possibility, that he will be open to the possible other causes, since mine started with a whiplash, and in February I had a bad fall on my neck, and my TN got worse and spread to other nerves as well, and my Dr. already seemed aware that pinched nerves in the spine could do this. I do agree with Red on one point though. He things cranial-sacral adjustment for TN is quackery. After all I've studied, I think it's a useless technique, because the top cervical vertebrae is inside your head, and doesn't move and can't be adjusted, and if someone tries, it could be deadly, because if they chip or damage the cervical spine, you could be completely paralyzed. Here's the page from the WHO (World Health Organization) search site that has a dozen pages of WHO articles with various causes suspected. Everything from malnutrition to certain vaccines and much much more. http://bit.ly/SgRsOd.
I've been dealing with TN since 2009. The first year, I tried to go off carbamezapine whenever I could. I would sometimes go in remission for four or five months, then it would start up again. For the past 15 months, I've been on 400mg of carbamezapine and my TN is about 97% under control. If I do get behind with my meds, I will have flare ups, but not full blown attacks. I'm scared to go off my medications because it's like playing russian roulette - am I feeling good because I'm in remission or am I feeling good because of the medicine?
My neurologist told me about a patient he treated several years ago who suffered from TN. Once, when she was ice-skating, she had a terrible fall and hit her head, but a positive side effect was that her TN went into remission for almost 10 years.
Thanks Sheila I shall take a look at the link. If your right as yours is caused by whiplash ( i also believe mine was caused by trauma) although my neuro does not agree, does it mean an MVD would not help us or has the trauma caused a compression? Does it also mean that if the cause was dental trauma then again would an MVD be of any use?
You're right again Elstep. If TN is caused by dental trauma or whiplash ar banged head, MVD would be useless, because the cause is not a blood vessel pushing up against the nerve.
Clambert, I'm sure happy for that lady who hit her head. It probably jarred the nerve and the blood vessel loose from touching each other! There's one man here who goes for a run when he gets an attack. He thinks it does the same thing, moves the nerve away from the blood vessel or something. I understand your fear of going off your meds altogether. Have you ever tried to go down to 200 mg? (With Dr. supervision of course). Anti-seizure meds are hard on the liver, so the least amount that is effective is the best dose to take.
Hi Ayre, I had TN for five years and was treated with various meds, nothing seemed to help. I took six Tegretol a day and every three weeks I had a nerve block,(several shots along the Trigeminal nerve on the left side of my face where my pain was. ) after a while nothing seemed to help anymore, I could not talk or eat, or brush my teeth . . . my face was swollen on the left side and my lower lip. That's when I decided to have Gamma Knife treatment, which I Had on Sept 25th 2012. So far I am very happy that I had this treatment, my pain is just about gone, although I read that it probably is not permanent.Hope you are doing alright. Norby
Norby so glad to hear the GK was effective. On here i always hear negativity regarding GK and I began to wonder why people chose to have it, now I know it can work! Congratulations and hope it lasts a long time for you. xxx
Norby, I was glad to hear your GK was effective. I think in the past 2 days I have read so many posts about all the various treatments. They worked for some, they didn't work for others. Before then, I would have tried to talk people out of a number of procedures due to the high failure rate, but now I see that there are failures and successes in every treatment. (Except MVD for atypical TN.)
Norby, I read that GK has high failure and I wouldn’t dare attempt it. You have gone through the risk and work well with it. Congratulations!
Best wishes.
Sheila, I may be wrong but I thought I had read that even TN2 can at times be helped at times with an MVD if it began with TN1 and then turned into TN2. I wonder why and how TN1 can turn into TN2? ( This is what happened to me)
My Neuro Surgeon told me…’ there is no such thing as type 1 or 2!’ if you have TN, you have TN!
GRRR! SO FRUSTIPATING! Unfortunately, most doctors are SADLY misinformed on TN. Some other doctors were taught that type 2 meant it was psychosomatic rather than purely physical. That's false too. It seems they aren't much interested in studying up on the new research, so we have to tactfully try to show them, teach them the new research, and this site has more than any one place on earth, so it's a great place to be to educate yourself and your Dr. Start with the "Face Pain Info" tab across the top of any page.
Sally said:
My Neuro Surgeon told me...' there is no such thing as type 1 or 2!' if you have TN, you have TN!
Oh? That's good to know. I did talk to one person who had both types, and he had the MVD, and he said it took away the shocks, but not the type 2 symptoms. I hope someday someone will figure out how nerve pain can change like that. I started with geniculate neuralgia (ice-pick in the ear- pain) then I also got TN, then also went to my tongue and roof of my mouth. Glossopharyngeal neuralgia. Type 2 by definition means that a nerve is not compressed by a blood vessel, so if it's straight type 2, an MVD (which separates the blood vessel from the nerve) wouldn't work. There's nothing being compressed.So like you said, the person wouldl have to have both type 1 and type 2 for it to even help a little bit.
elstep said:
Sheila, I may be wrong but I thought I had read that even TN2 can at times be helped at times with an MVD if it began with TN1 and then turned into TN2. I wonder why and how TN1 can turn into TN2? ( This is what happened to me)
Sally Type 1 and 2 feel completely different.
In my experience Type 1 is like having an electric shock and my body coiled up in reaction to it.
I was unable to function for those few moments. Each shock would only last moments,but they can come on in waves.
Type 2 is like having something going on in the face, various places along the nerve path would ache or throb in my case it is worse in one particular tooth. ( nothing wrong with the tooth) But as mine is mild I am able to function.
Sheila what you have explained makes perfect sense. I sometimes get confused so it is good to have explained to me again.
do they know why it travels mine first started in the right lower jaw towards the front with type i and type 2 but these last two episodes it has caused pain to the upper right jaw and i can feel it in my ear mostly type 2 pain the burning i do get a little electrical shocks in the lower where it all started but not anywhere else????? Is it going to continue to travel to other places???? If it is nerve damage from something are my nerves going to continue to get damaged I have had trauma to that side of my face but it was years ago when this first started in 2009 I has gone for a cavity work in August but did not experience pain until nov of that year then the dentist just started doing root canals on good teeth it wasnt until I went a friend of the family dentist that sent me to a dentist specialist and he sent me to pain management neurologist that did a mri and never explained anything to me just gave me some meds well at the time it went away and stayed away for almost a year then went for more dental work and it came back for about 3 months then I got pregnant and it went away until after my son was born dec 2011 and that was the worst it has been went to another neurologist because i am still not understanding all of this it got bad from about feb 2012 to april 2012 went away until sept 2012 and know the pain is more intense and has moved to other areas whey i have not had any procedures i have never had it flare up in the fall i only have my family dr helping me as i dont know a neurologist yet that i want to go to i live in mi and have been researching the ones on the list i am on The generic form of trileptal 300mg 3 times a steroid and another drug 25m a day cant remeber the name of the top of my head...lol any advice would be great
thank you
andria
Sheila W. said:
Oh? That's good to know. I did talk to one person who had both types, and he had the MVD, and he said it took away the shocks, but not the type 2 symptoms. I hope someday someone will figure out how nerve pain can change like that. I started with geniculate neuralgia (ice-pick in the ear- pain) then I also got TN, then also went to my tongue and roof of my mouth. Glossopharyngeal neuralgia. Type 2 by definition means that a nerve is not compressed by a blood vessel, so if it's straight type 2, an MVD (which separates the blood vessel from the nerve) wouldn't work. There's nothing being compressed.So like you said, the person wouldl have to have both type 1 and type 2 for it to even help a little bit.
elstep said:Sheila, I may be wrong but I thought I had read that even TN2 can at times be helped at times with an MVD if it began with TN1 and then turned into TN2. I wonder why and how TN1 can turn into TN2? ( This is what happened to me)
Ayre, I may be wrong, because like you I am just trying to understand it myself. Sheila seems very knowledgeable.
Sheila am I right in thinking that if it the nerve is damaged then it is more likely to hurt 24/7 but if it is due to a compression then the pain will come and go?