just can't shake it

Just got back from the doctor and pharmacy. This was my six month med check on topamax/topiramate, which I have been increasingly disliking.

I began having migraines when I was 13 or 14, and they were pretty irregular; I had very few while on zoloft (one of the few plusses of remaining on that med longer than otherwise necessary). In July of 2007, I had a sudden, unexpected and unexplainable upswing in frequency, from one every six weeks or so to, at the worst of it, three and four a week (it was a nice, slow exponential curve towards that point). I saw a neurologist and was given a beta blocker, inderal/propranolol, which thankfully dropped me back down to one a monthish. We agreed that was a manageable level and I didn’t pursue further treatments.

In March of this year, after slowly watching the number of migraines per month creep back up from maybe one to two or possibly three, I went to the doctor. My blood pressure was tolerable, but my heart rate was quite a bit too low to add more beta blockers (which is what I was hoping for going in); 52 is apparently unacceptable. We started topamax then.

The side effects have been varied and interesting. They’ve been neutral, by and large, with the exception of what appears to be a ten pound loss–definitely positive. There’s been some parasthesia in my lips and fingers when I’m cold (which is pretty unpleasant but tolerable), and some really interesting visual disturbances when I wake up. I can best describe these as ghosting effects, or perhaps what it’s like when the shutter on a camera is too slow for a moving object. Motion blur. Except that everything that moves, or which I move in relation to, has them. FUN. (not fun) This started out as being a very transient thing which lasted up to five minutes after waking and happened once or twice out of the week; now it can last up to an hour and happens probably four or five days out of the week. At the very start, but not so much now, I had organized patterns of moving very small white/irridescent lights in my peripheral vision–now I do sometimes get brief flashes of the white lights on white or lightly coloured walls (I get them when I first get to work if I nap before going in, I find), but not in the same organized patterns as before.

All of this has served to make my doctor think I am very mildly crazy. Well, I can’t exactly blame him. I’m reporting visual phenomena which can’t be validated and probably do sound a little crazy, except that I have a definite start date for them which coincides with the start of this med (also, they look like my migraine auras, which are rare but distinct–and it makes sense to me that the med would affect the same area of my brain).

Twice in June, again in July, twice in August, and then last week coming home from Boo Gardens, I had what I am tentatively labelling seizure-like events (my doctor did not like my tentativeness, either–”You’re not very decisive!”). On all five occasions, I was up waaaaay too late (in the neighborhood of 24-35 hours) because of the way my work schedule ended up, or had only napped for 2-3 hours after getting home from work and then continued on my merry way. On four of the five, I was late getting my meds because I was so late getting home and to bed, although I take my pills when I feel like it, at this point, so I don’t really see how that makes too much of a change.

If I was, in fact, having seizures, they were simple partial in nature. I was concious each time and acutely remember each event (which involved nystagmus and visual disturbance), but not being distressed or feeling like I was in any danger. They were probably occipital in origin–funnily enough, where my migraines tend to start (the migraines that just burst into existence, at least–about a third begin their lives as sinus headaches).

My doc doesn’t buy that the topamax could be causing them, as it’s an anti-epileptic. I say that my body is perverse that way–benadryl doesn’t put me to sleep, either. Either way, he agreed to take me off the topamax and we’ll recheck in 2 weeks to see if the rest of my side effects have dropped off. I want to antagonize the possible seizure activity, so I guess I need to stay up next week. Hmm…wonder what I can do to make that happen? I’ll work something out.

Edit: Oh, balls. Imitrex is contraindicted for basilar migraines, which I have had (apparently so is my beta-blocker, which I didn’t know). I guess I’m bookmarking this and bringing it in with me in two weeks.

Edit again: The ghosting effect is called palinopsia, and I am experiencing the positive variety. I WIN AT WIKIPEDIA.