I was fine for 6 months after an ER visit with IV narcotics to stop the pain, never touched the hydrocodone prescription my neurologist gave me afterwards for emergencies. Then right before a long anticipated vacation to Vegas....WHAM! Got pain sneezing, blinking, bending over, chewing, talking. Went through almost all of my prescription that sat for 6 months in two weeks. Is the pain part psychological?
I now have the damn pain and see my neurologist for my 6 month tune up next week. Was it just a matter of time before I had "breakthrough" pain from my new regimen 6 months ago of 300 mg Lyrica and 450 mg oxycarbazepine daily? What in your opinion causes the pain to come back? I had no injury to my face, no whiplash, no dental work...now even blotting my face after showering sets off the pain. Help with any insight/experiences you can give! I hate this!!!
Well I am not a Dr nor do I have medical training so this is anecdotal:
There is a protective myelin sheath on the Trigeminal nerve and when that wears down we feel the TN pain we know so well. then it repairs itself and we have remission and so on and so on.....................
This apparently does not apply to Type II TN unfortunately. Just Type I.
I stand to be corrected and cannot vouch for this. Just trying to help and I wish you a speedy repair.
Jackie, do you know the reasons why myelin sheath wears down (apart from aging, maybe)? I mean is there something that we can all do to prevent this from happening...vitamin supplements, foods that we eat, anything... or is it just anavoidable? I should really get the book "Striking Back", the subject is probably discussed there as well. I'm type II and my neuro says that spontaneus healing does occur in some cases...when the damage was caused by injury, for example. I only hope that she's right!
Jackie said:
Well I am not a Dr nor do I have medical training so this is anecdotal:
There is a protective myelin sheath on the Trigeminal nerve and when that wears down we feel the TN pain we know so well. then it repairs itself and we have remission and so on and soon.....................
This apparently does not apply to Type II TN unfortunately. Just Type I.
I stand to be corrected and cannot vouch for this. Just trying to help and I wish you a speedy repair.
The most common cause of trigeminal neuralgia is compression of the trigeminal nerve (also called the fifth cranial nerve) by an artery or vein at the base of the brain behind the ear. Compression from the blood vessel causes the myelin sheath - a special coating around a nerve that helps it transmit signals faster through the body - to wear down and the nerve to send abnormal pain signals to the brain.
b12 is responsible for myelin health and neurological health. It's a good vitamin to take - I would recommend the sublingual. But if the myelin is damaged beyond repair then I don't think b12 would help but it can't hurt. As we get older b12 is harder to absorb from food. I know a lot about it because I had a severe problem with not enough b12 and had neurological problems before it was diagnosed. I was fortunate that it was diagnosed before the effects became permanent although I do have mild neuropathy in my feet. It's also a vitamin that won't do any damage if you take a lot of it. I have to get shots now but that's only because the sublingual stopped working. It is NOT A CURE. But if you have low b12 it will really help in feeling better is many ways. I get the shots but I can't say if it's kept the TN from getting worse or delayed in development - I'll never know. I CAN say that it didn't prevent it from happening. I was getting shots once a month years before this thing reared it's ugly head. And right now I am in the early stages of TN - still treatable with anti-convulsants.
The only thing to keep the artery or whatever it is from wearing down the myelin sheath on the nerve is surgery where they separate the two and put some kind of padding between them. But it doesn't have a great success rate for a long time. Having said that, I have already decided that surgery WILL be a step in my future when meds no longer works. There are also therapies where they damage or even cut the nerve but that has risks and complications as well.
I found that Amazon has the best prices for the book Striking Back. It's very informative book (and very depressing to me because it IS so informative on the progression of this disease).
Also, there is no way to repair the myelin once it is damaged at a certain point. If there was then there would be cures for diseases such as ALS and a number of diseases that destroy myelin. If I had waited longer before getting my b12 deficiency treated I could have been in a wheel chair or even died from it because of the damage to the myelin would not have been repairable.