Hello, I have been given a script for Tegretol. I have trigeminal neuralgia and a diagnosis of MAV at one point in this journey as well. My neuro is saying Tegretol is a migraine med.I have VERY severe hyperacusis and he thinks this might help with that. I have not seen a lot of posts on about this particular med. Can anyone tell me if this is indeed a good migraine med? I really don’t want to start layering meds that might not be effective. I have taken it a few days, and so far the only side effect was feeling a bit off cognitively . Thanks for your help.
Sorry no idea for migraine but my ex took this at high doses for epilepsy with absolutely zero side effects.
I’ve heard it’s good for TN. Good luck x
It helped me a fair bit . . . and also caused bone loss over time. I lost about 2 inches, despite a good diet high in low-fat dairy and healthy levels of exercise, including weight-bearing exercise.
Yes have tried Tegretol for MAV and suspected trigeminal neuralgia under good neuro supervision. I’m really sorry I also have sound sensitivity but I cant recall whether it helped.
The great news is that my niece has taken a high dose of Tegretol for more than a decade for epilepsy without any side effects at all. It is a medication that has been around a long time and has much more medical evidence about it’s features/quirks etc than many we MAV’ers take. So Drs know about it and how to manage it.
The other good news is that I found that Tegretol worked pretty well immediately and well and inside the first fortnight I had eight wonderful days without any symptoms. Incredible after trying nearly everything else mentioned on the board without much joy.
However the testing regime requires before and after blood tests (at about a month) and you really must have them. A very small % of us can get bad liver side effects that take days/weeks or longer to 'unfold". Very disappointing after such a positive start and involved a hospital stay of a week late 2012.
Dont even try a re-test - that was a really bad idea a month or so back and the reaction took only a day or two.
So sorry to be long-winded but it is really worth a go. For a very small number of people Tegretol (like many drugs) has possibility of extreme reactions but there seem to be well recognised processes and supervision. good luck 
For many others others with face pain and migraine it is fantastic