I had my long-awaited visit with The head of neurology this morning. He confirmed my diagnosis, ordered some additional bloodwork and wrote me an rx for carnamazepine/tegretol to take along with my aspirin. Have any of you had any luck with it or had any negative side effects? Thanks…
I haven't tried these yet As a matter of fact I know nothing about them so I am off to do a bit of research! Thank you!
Please let us know if it helps.
Take care,
Alina
Oops. The proper spelling is carbamazepine. Apparently, it is an epilepsy drug that has been around forever that works as a sodium channel blocker. Here’s one link I found:
http://www.ncbi.nlm.nih.gov/m/pubmed/19557861/
Mexiletine is a more selective sodium channel blocker, but has less information bc it is used muh less in clinical practice than the anti convulsants. Did they discuss why they chose Tegretol over lamictal or Mexiletine? Just curious. Good luck and God bless you! Are you positive for the Na1.7 mutation?
I’m wondering if these medications are more effective in those w the positive test for the mutation or if everyone will likely benefit?? Thank you for sharing your knowledge 
God bless you
Hi Jenny,
He didn’t say why he went with this drug over others, but he did say that this one is known to be tolerable and to have only generally mild side effects. I don’t know about my genetic status, as I have not gotten my results from the xenon study yet, but, from what I have read, carbamazepine sensitivity seems to be linked to having the mutation.