urocyon

I've got a lot to process right now. It's looking remarkably like a lot of the problems I've been running into may be coming from an inherited kind of temporal lobe epilepsy, which is still somehow scary even though a new label doesn't really change anything.

With my known sensory sensitivities and processing weirdness, I'd just assumed that the weirdo sensory and emotional episodes were coming from getting overloaded and stressed enough that my nervous system short-circuited and caused all kinds of further weirdness. Yeah, that's still a pretty good description of it. :-|

Including some "meltdown" episodes, mostly when I was younger, that actually looked like some kind of seizure to my mom at the time--but she was less concerned after she found out that other of my biodad's family members (the autistic-looking ones, surprise!) do exactly the same thing, down to very specific strange movement patterns they've usually never seen before. (Then we get splitting headaches, start slurring speech and having coordination problems, and have to go lie down...erm, yeah.) It even has a name, the "John Fit", after one ancestor who kept having them pretty much on a daily basis, all his life. Most of the rest of us seem to learn to recognize them coming on and avoid further overload. My biodad still occasionally had them when I knew him, and I have only narrowly avoided several as an adult.

I've also had other experiences that look a lot like complex partial seizures, but mostly simple partial seizure-type experiences on a daily basis. More on the distinction, and some of the phenomena: Possible Temporal Lobe Symptoms.

Actually, I'd been aware for years that a lot of people with similar neurological setups have seizure disorders, including TLE, and a lot of experiences people I know had described with that have sounded way too familiar. I didn't know that this kind of thing is also more common among people with celiac. I wondered about the possibility when I was still being considered bipolar (and yes, there is confusion there), but apparently it was just too disturbing to look into with the stress I was already under. Another rather interesting article there: Complex Partial Seizures Present Diagnostic Challenge.

It does make me more than a little angry that some experiences that may well have been coming from seizures got treated as signs of serious psychological and/or psychiatric problems with poor insight, and I got treated like crap out of frustration when the medications that "should" help just didn't. The idea that it was "just" autism aggravated me enough, but fairly straightforward seizures, FFS?! Especially when the medications I had the most bizarrely unpleasant experiences while taking (which were usually dismissed) are well-known for lowering the seizure threshold. Probably the worst couple of months I've ever had were on Wellbutrin/bupropion, and some of the things I've assumed were EPS from neuroleptics look suspiciously like clusters of complex-partial seizure activity. (Apparently being a CYP2D6 poor metabolizer, with increased-to-toxic blood levels of certain meds, could not have helped at all.) And I may well have continued to have lowered seizure threshold after stopping taking them, leading to a lot of the continuing problems; it happens.

I also felt a lot better on Klonopin/clonazepam, which is often used to treat seizure disorders, and had a lot fewer weirdo sudden panic and other emotionally overwhelming episodes. I also slept better. Interestingly, I never had withdrawal symptoms of any kind from other similar drugs (Xanax, Ativan, Valium, Librium), but got what I now believe to have been increased seizure activity when I went off the Klonopin. It was a very bizarre experience. Xanax and Ativan helped too, but not nearly as much; Klonopin is longer-acting and more specifically used for epilepsy.

Yeah, I know a lot of the anger is a way of dealing with the anxiety and other more difficult-to-manage feelings, but geez. I thought I'd just about reached my anger limit over the earlier misdiagnosis, mishandling, and shoddy treatment (which nobody deserves, regardless of diagnosis), but apparently not.

One of the things I was particularly interested to see, and which really got me thinking about the possibility, was the connection to migraine-type symptoms. An interesting paper (PDF): Differentiating Migraine From Epilepsy. From what I've been reading, I am strongly suspecting that at least most of my "migraines" are really simple partial seizures (the "aura") followed by postictal headaches, nausea, etc. It made entirely too much sense. The two things seem to be both connected and frequently confused, anyway. I had been suspecting that a lot of the really troublesome brain fog, fatigue, and depression ("negative symptoms") I've been having day-to-day might have something to do with the frequent migraines besides the medication after-effects, but, yeah, this is the kind of thing you'd expect with frequent seizures.

So might be the really annoying episodes of "sleep drunkenness", especially after I get jerked awake for no apparent reason (duh!); confusional arousals apparently also go along with TL seizures in particular. I had a lot of trouble with "night terrors" as a kid, too, and it still happens sometimes. I had no idea that the sweats might be related.

In a way, all of this is encouraging, because there may well be something to be done about the freaking headaches and brain fog, which have really been affecting my quality of life a lot. OTOH, I am still dealing with the medical PTSD, and have had some bad experiences with anticonvulsants in past. Topamax/topiramate didn't seem to help any of these symptoms, and gave me serious brain fog and language difficulties; Depakote/valproate messed up my liver function and turned me into a zombie who nonetheless managed to gain 40 lbs. in a month (neat trick when you get up to sleeping 20 hours a day!). I am scared by the idea of trying to find out if TLE is the problem--especially since it's hard to diagnose, frequently not showing up on EEGs--and get proper treatment if it is. Especially since I can't just make an appointment with a neurologist, under the NHS, and find another one if the first one is an ass.

I'm also really disappointed because I was hoping to finally get a British driving license soon. I've been driving since 1991, and it's never been a problem; nobody else in my family who has these symptoms has ever gone on to have the consciousness-losing kind of seizures, that I know of. (I'm pretty sure I'd have heard about it!) But, it's understandable that the DVLA would be really cautious about this kind of thing. And now it concerns me that maybe I've been dangerous on the road without even knowing it. :( With the 90%+ suspicion that I've been having seizures, I don't know that I can go ahead and try to get my provisional license in good conscience, officially diagnosed or no--and I was really looking forward to being able to drive in the UK.

This has given me a lot to think about. And now I've got Joy Division stuck in my head.



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