I have not, contrary to what it may look like, dropped off the face of the earth.

Since my last post, I have:

1. Gone to the doctor, quit the useless imitrex (anyone need some? I have leftovers), and been scheduled for meetings with the opthamologist and an mri.

2. Done those things. The mri was today (well, technically yesterday–Friday morning). Were you aware that I have a brain? (I must note before I forget that, ha, in keeping with logic about NVLD and autism, my left hemisphere appears to be just slightly bigger than my right on all of the scans. I laughed.)

3. Been ill.

4. Saw KATE! With Ben Folds, who was also quite nice, but the important thing here is that I saw KATE!

Each of these deserves a post, and maybe I’ll get the chance to do that stuff while I head down to Mom’s house to help her put a sticker on the wall and recover my aspie book. I’m also hoping to list some of the 20 million things I have for etsy, which takes priority since I am not Dooce and no one pays me to blog. I mean, hell, no one really reads this except Kit–at least, not regularly. I think even Mom quit. So, they’ll happen. Yep.

Shit, maybe the topamax was actually doing something–I’m at the onset of migraine number two for this week, and am aware of two things:

1. I should have guessed, given I slept for 10 hours (my prodrome invariably involves sleepiness, as do the actual headache, and the postdrome–I’m basically not sleepy when my migraines are well controlled and all other times are no-go).
2. I do not have imitrex with me, because, shit, I already had one this week, and I was not expecting further issues for at least another day or two.

This one involved a very minor (very, very) aura, but the main feature is occipital pain and sinus pain, so far. I want a nap.

Edit: Excedrin. This is why I always have it with me. Fuck this ‘scrip shit. Within an hour, I was merely tender, and within two it was gone.

Still tender and vaguely headachey in the occipital region, almost exactly 4 hours after I took the imitrex (about five after I started noticing the onset of pain, while we were at the vet’s and driving home). I’m also currently having a hiccuping fit. I should have included them in my description of seizure-like bizzareness. Who the hell hiccups for ten minutes straight without precipitant? Apparently people having simple partial seizures. I really hope they go away as I withdraw from the topamax over the next day or two–it’s even become something of a joke at work (well, I’m not entirely certain I’m not the butt of a joke in this case, but I’m not offended, so it’s harmless?) that I hiccup often and without cause. Light sensitivity has receded. Frankly, I’ve had as good or better pain management on excedrin. Mom reccomended chasing with ibuprofin, as she thinks it’s what’s in the newer formulation–I’ll check drugs.com and see.

Aaaaand here comes my first migraine. I can feel it starting everywhere in my head (it’s one of those, great–did you know “sinus headaches” are usually migraines?), from above my cheekbones to the backs of my eyes to, no surprise, the occipital region of my skull. It is a rare migraine for me that doesn’t have some occipital involvement, whether in the form of pain that ends up centred there or scintillations (which I’ve learned is the correct word for the flickering white/irridescent lights–maybe if I was using it, I wouldn’t get the crazy look?). It’s funny to read all this stuff about how migraines are usually unilateral, because mine so rarely are; they often start on the right side, but within the first few minutes are bilateral.

Since a) I haven’t had a basilar type in almost two years and b) this started as a sinusy-type (I forget the right word for it, which I think is fair given my head fucking hurts) and is quickly moving into an all over the head kind, I’m going to try this imitrex stuff. And see if I can eat and have some coffee (both usually also help).

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.

Insights I have had in the past few days:

1. I really can’t skip the iron pills.

I thought I was in the clear because the month that Kitty was here was like some unending meat-fest, in terms of the relative level of meat in my diet. I normally don’t get a lot of meat because it’s expensive (I only buy free-range, hormone free stuff if I’m doing the cooking), and there’s that whole raw meat thing which I’m not down with. I eat a lot of vegetable proteins (mostly soy) and cheese and yogurt and hope for the best, although of late my yogurt consumption hasn’t been dairy, either. Of course, this is illogical, because the body continually uses its stores of iron and needs them to be replaced.

My iron levels have been ridiculously low in the past, something I first discovered as a teen when I started to give blood–and got rejected about every other time for too-low iron. I’ve had this followed up by doctors intermittently (with lab work) and the usual reccomendation is to take a ridiculous amount of iron pills and get on with things. The thing is, iron pills make living unpleasant–they cause my already unpleasant stomach upsets to become worse. So I avoid taking them as often as I probably ought to and rely on instinct (ha) and/or Kitty to tell me when I’m due for a pill.

So I’ve had this headache for about 2 weeks. I’ve felt stuffy, dizzy, tired–very tired. It’s been really bad, but not migrainous, which has been a confusion and a relief. The extreme visual side effects of my topamax (for the migraines, a small dose) have been out of control to the point that I’ve been seriously concerned that I’m beginning to have occipital seizures. It finally occured to me that it’d been about two months since my last iron pill, and the amount of meat I ate while Kitty was here not withstanding, that is an awfully long time.

The side effects were the first to drop away, back to their usual level of obnoxiousness. Then the tireness, and then the stuffiness, and last the headache (it’s still there a little bit). Ah, anemia. Lesson learned: remember the things that I already have, rather than being afraid of things I might have in some horrible alternate universe.

2. On the subject of Things I Have vs Things I Don’t But Could In An Alternate Universe, I got the results (finally) from the first clinician I saw. My overall feeling after having read his report is that I was swindled out of a large sum of money for very little effort on his part, with a dose of sexism and perhaps a side of pet theory.

What I should make clear before I go on is that this psychologist has social anxiety himself, and made a point to tell me this a number of times during our two meetings.

So, according to him (although not my current therapist, who agrees with my self-assessed aspieness, and with whom I will finally be discussing these results this coming week), I have a social anxiety disorder and avoidant personality. The report is like some strange hybrid of what really happened and what I think he wanted to happen in our meetings–he gave a lot more weight to answers that were not weighted by me, and did not listen to a great deal of what I told him. The fact that I meet all criteria for AS was roundly ignored, although he was “kind” enough to leave a “rule out PDD” in my Axis I. The fact that he did not care to specify which speaks volumes as to his skill.

The thing is, I have this handy internet right here at my fingertips, and have accessed the guidelines for social anxiety disorder (social phobia–which should have been given a specification, even if it was only ‘generalized’) and avoidant personality disorder. As far as I am aware, I do not meet the criteria for either of these categories.

Now, I might meet one criteria in SA (point D); I do tend to avoid social interactions in the scope that I know this psychologist was discussing (parties). This is because parties are often loud, with new people, and there’s just a lot going on sensory-wise. I don’t dislike them once I’m there, usually, and I attended parties on a pretty regular basis in Melbourne. I go out to eat, to the store, to work, to see plays and movies, all without problems. I believe that he interpreted my dislike of other people because I don’t understand their intentions all of the time for fear, and this is a problem within his own nature–projecting his own diagnosis–not a problem with me. I will concede to point 6 (the first part–I think I am often a bit inept!) in the avoidant list.

So he’s given me this inaccurate set of diagnoses, ignored my accurate self-diagnosis, and I’m trying to work out why. The best I can come up with is this: I am a girl. I am very smart, and I am largely self-sufficient. I was on my best behaviour (no stims, no tip-toes, no meltdowns, compliant and test-taking and omg I love tests it is a miracle this blog is not overrun with internet quiz memes yet). I have a girlfriend, which explicitly counted against me in his final review (queers and people in relationships can’t be on the spectrum now–I guess I’ll have to tell the researcher I’m helping out via the GRASP newsletter). He had a medical view of autism and the spectrum, and was not open to neurodiversity as a concept, nor to the social model of autism.

He did not ask, or wish to know about, my Theory of Mind, my executive function. I was “too open to new experiences” to be really aspie (because one of the tests they gave asked if I liked to travel–in my opinion, an aspie dream of planning and maps and public transport and endless flight details).

He asked, at one point, if I held grudges. “Most autistics do, I find.” I stammered a no, because it’s rude to hold grudges; later I realized that I do, profoundly. I still hate the kid who forged my signature on a prank love letter in 7th grade and slipped it into the locker of another boy. I lost one of my best friends over a grudge because she wouldn’t apologize for being cruel. I wonder if he would find me more autistic knowing that this envelope has only added fuel to an already well-burning grudge, or if he would just accuse me of faking?