Hlt, couldn’t agree more about the drugs. Until they can find the cause and, hopefully, therefore a cure of some sort, we’re stuck with the drugs, so something that didn’t knock out the whole nervous system (not to mention mess with your blood etc) would be a huge improvement.
As for MVD, I also agree with you on that one. Just reading the list of potential side effects was enough to put me off. I think it’s great that it’s there for people who have hit the end of the road - at least it gives them somewhere else to go, but as far as I am concerned it’s still brain surgery. I recently had the same chief consultant neurologist recommend me going down the surgery route because Carbamazepine gives me so many adverse side effects and my B12 injections are not managing it completely any more, but I was pleased that even my doctor thought he was nuts. She said, and I quote “I don’t blame you. I wouldn’t be keen on brain surgery either”. She wasn’t going to say it out loud and disrespect her ‘better’ but her expression said it all!
P.S. I definitely believe the myelin sheath is part of the problem - you only have to look at MS, the only disease, to my knowledge, that has TN as one of its symptoms. I also believe in the demyelination theory from my own experience. I’d had bad TN, full classic with shocks all day long for virtually anything, before I strong-armed my doctor into giving me B12 injections, and they put me into remission within 3 weeks. I believe due to myelin sheath repair. Unfortunately it hasn’t lasted but the fact that my TN now is a paler version of the original testifies to how much repair my body was able to do with adequate B12. It’s a shame the cause (in my opinion a completely non-functional gallbladder for a year and a half coupled with a very low fat diet) was not highlighted to me at the time. Doctors all know - or they should - that the gallbladder plays a role in B12 absorption but not one of them, including consultants, ever warned me that I was running a serious danger of becoming very B12 deficient. Ironic, and potentially tragic, to think that if I’d even taken a cheap OTC B12 supplement I might never have got TN, or at least not got it till I was much older!