Laureen, I was on 800 mg of Tegretol and 50 mg of Topamax - and I was still having breakthrough pain. I didn't want to increase the meds because I was already so tired and dizzy that I was no longer driving and felt like an invalid most of the time. [I'd been on 1200 mg of Tegretol back in 1998. I was still driving, but I felt like my personality changed on the higher doses on Tegretol.]

A week ago, my neurologist told me I could decrease the Tegretol to 600 mg. Tomorrow and every week after that I am to decrease by 100 mg till I'm off the Tegretol.

Twinges. Yes, I have felt some twinges. In fact yesterday was a fairly strong one--but not really that painful. I don't think it's the trigeminal nerve, but of course it worries me. I think I read here somewhere that someone else had twinges that went away.

I don't think it's the trigeminal nerve that is firing because it isn't triggered the same way, it isn't quite in the same place, and it isn't the fast, stabbing sensation I associate with TN. It actually seemed to move down rather than shoot up.

Jan 08 I had the balloon procedure which didn't do much for the TN but gave me pain around my eye (though that wasn't a pain that moved and this twinge is). I had to stay on Tegretol for 6 months for that pain. My neurologist explained that Tegretol blocks nerve pain, not just Trigeminal nerve pain. So I am thinking that there must be some pain nerves that are irritated from the surgery (it's only 3 weeks today) and hopefully that is what I'm starting to feel.

My husband, who talked in detail with my surgeon after the surgery, is pretty confident that this surgery will be a success. I had 2 clear compressions, visible even on the imaging before the surgery. And they had enough monitoring of what was going on in my head that the surgeon could tell my husband that there was a nerve that was still reactive but it was a motor nerve, not a pain nerve, so they didn't need to do anything with that. (I can feel that flutter at times - never bothers me cause it has never had any pain with it!). I figure if they can monitor the nerves in my head that closely, then they would have been able to tell if there were any other pain nerves reacting to stimuli before they closed me up.

So I try to remind myself of all that when I get anxious. But still sometimes the anxiety gets to me. Mostly at night.

I figure that if the twinges continue or get worse with another decrease in Tegretol, I will need to report it to my neurologist, and he'll probably slow down my schedule for decreasing the Tegretol. I'd like to get a little lower before doing that, if I can, so I can have fewer side effects. I am so tired of feeling like an invalid on meds (I have other conditions I am on meds for, and I hate being on so many medications).

A long answer, but hopefully of some help if not to you than to someone else.

Have you felt any twinges or pain?