Well, I’m back. Never really left, but I haven’t posted in a long time.
A little bit of news on where things stand for me – my previous trial, which was Effexor XR (37.5) + Keppra (2000), did nothing either way. That “combo” trial lasted about five weeks.
So (as a few people here know from PM’s with me), I’m on Topamax now. I’ve been on 50 mg for six weeks. I just saw Hain for a follow-up on Thursday, and I told him that – rather surprisingly – I’ve had almost no side effects at all on Topamax.
So I “took the plunge” and said, “If you’re OK with the idea, I’d like to push the dose up and see if I still handle it well.” So I’m to work up to 75 mg, then to 100. Who knows what will happen – 50 seems to be the cutoff point for a lot of people.
I could say more, but I won’t, except for the fact I’m still on a downhill trend (symptom-wise) – as I’ve always been since this started – so some days are pretty hard to bear. Then again, I guess that’s the case for a lot of us here.
Hey George,
Great to see you back on the board. I haven’t posted in ages either although I do check in every now and then. I’m really sorry to hear things aren’t improving for you but it’s really promising that you can tolerate the Topamax. Best of luck!
Vic
Hi George,
Im glad to see you back on…several docs I’ve spoken with say their patients have little to no problems with Topamax except for some finger tingling and occasional trouble with word finding. Sounds like a small price to pay to get your life back if it works. I’m hoping this is the case for you…are you still taking the Xanax? Is it helping?
Kelley
Kelley – the two side-effects you describe are certainly a small price to pay. Though I’ve heard a lot of people say they couldn’t tolerate Topamax at all, even at a small dose. When I told Hain I didn’t even get the usual tingling sensations, that was when he more or less agreed with my my proposal to go higher. So now I’m on 75 mg, and to go up to 100 in 1-2 weeks. (Could potentially go even higher, but will see.)
I take Xanax still, yes. Over the months I’ve had to increase a bit to compensate for the tolerance. I began at 1/4 mg – was there for probably two months – and currently I’m at 1 mg. Though lately I’ve been doing a combination of half Xanax, half Valium, which has allowed me to lessen the Xanax dose a bit while still getting relief.
A few weeks ago I tried going without anything for one day – to see what my symptoms were like without “help.” Wrong move. I about wanted to shoot myself. All in all, Xanax (or whatever benzo) still does help. Though compared to the level of relief I got from it in months prior, it’s significantly less now. I’ll take whatever I can get, even so…
George,
With anxiety seeming to be a big issue with your symptoms, and getting a relief from an antianxiety med, did you ever try Paxil? That is supposed to be the best for anxiety based dizziness etc…I have often wondered for myself if that would be a good move. Just curious…
Kelley
Odd as it sounds, I don’t think anxiety is a factor (or it isn’t much of one) in the symptoms. Last time I tried an antidepressant I did worse instead of better. When I asked Hain why the benzos work on dizziness-type symptoms, he said it sort of “raises the threshold” (of what I can tolerate) and has a “depressant,” or calming, effect on the brain and CNS. If I understand correctly, in migraine (or at least MAV), the brain is in a sort of state of hypersensitivity.
In short, I might try Paxil (or some SSRI), but it wouldn’t be my first choice, especially with my history with AD’s.