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Autism, medication, and seizure risk

August 11, 2011

A chunk I added to an older post (Autistic medication: some serious risks)  just now, which I decided to bring over to a post of its own, because it’s just that important:

ETA 11/08/2011:  This edit was prompted by a link  from an excellent roundup post at A world that loved monsters. You might want to check it out!

I have reason now to believe that this was not akathisia, but a seriously reduced seizure threshold unmasking unrecognized temporal lobe epilepsy.  (It is very possible to have epilepsy without tonic-clonic/grand mal seizures, though that’s what most people think of when they hear epilepsy. See also Possible Temporal Lobe Symptoms.) This was a problem with other medications–pretty much all antidepressants and antipsychotics will make you more likely to have seizures if you have an underlying seizure disorder–but bupropion is especially renowned for this. It also caused the strongest reaction; I now suspect that I was having waves of partial seizures pretty much all day long. This, in itself, is more than enough to do some damage to your memory and other cognitive functions. It will also very directly make you extremely tired and depressed.

It is worth noting, in this context, that at least 25% of autistic people are known to have seizure disorders, so this is a significant risk.

See also Autism And Epilepsy: The Complex Relationship Between Cognition, Behavior And Seizure.

It is also worth noting, from Sudden Unexpected Death in Epilepsy, that:

Mortality due to epilepsy is a significant concern. Patients with epilepsy have a mortality rate significantly higher than that of the general population. The standardized mortality rate (SMR) is shown to be 1.6-9.3 times higher in this population.

The more seizures, the greater the risk of death or serious injury. Medications which lower your seizure threshold can actually kill you. Beyond the risk of suicide if you are having certain types of seizures that affect your emotions. (The scariest thing about Wellbutrin for me was that, besides hyperfear, I got these sudden overwhelming suicidal urges.)

From a locked Dreamwidth post, because it was both so ranty and so personal:

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.

Another quote from that one, FYI:

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.

Yeah, I got serious migraines and cluster headaches on multiple meds. Nobody should be expected just to put up with that. Additionally, real migraines and cluster headaches will give you brain fog, depression, and anxiety symptoms. Much like the other adverse effects, the treatment for that should not be more of the same thing that’s triggering it!

And given some of the treatment I have received for being a perceived-as-mentally-ill autistic person–to the point of medical PTSD–I have not been hopping to try to get the probable epilepsy diagnosed/treated. Especially under the NHS, since if the neurologist I’m referred to treats me disrespectfully, brushes me off, or is just not knowledgeable about epilepsy (surprisingly, a real concern), I can’t easily just find another one. You are referred to a specialist, and just have to show up at the time and date given to see whoever is assigned. This does not provide a lot of incentive to treat people respectfully, IME, though that is a whole other story. :( /ETA

______

I was clued into the epilepsy possibility, I now know, because the screwed-up electrolytes from a vitamin D deficiency and osteomalacia will also seriously lower your seizure threshold–and I started having really significant problems again. The neighbor’s loud music was regularly giving me obvious seizure symptoms*, I was really hypersensitive to flashing lights, when I got overloaded enough I kept having what looked suspiciously like seizures (really fun in overloading, crowded public places!), etc. That made me not want to leave the house much, and contributed a lot to brain fog. I was also having evidence of tonic-clonic night seizures at times, complete with chomping on the inside of my mouth. (Mr. U sleeps like a log, so his not waking up didn’t mean I wasn’t thrashing around.) It all felt eerily like when I was on certain medications before–but with better ways of coping and more information about what might be happening rather than just feeling irretrievably crazy, with the problems from that being treated as further psych symptoms.

Now that I am recovering and should have higher blood levels of calcium and magnesium, the really freaking scary seizure-like stuff has calmed back down.

To further complicate things, I think a lot of the dystonia (with serious chronic pain from that) and other EPS were coming from the same neuromuscular problems from the vitamin D deficiency messing with my nervous system. That can cause EPS all on its own; throw in direct action from the medications, and well…

This all started when I was put on meds 15+ years ago, which made me photosensitive and prone to dangerously overheating in the sun–as antipsychotics are renowned for doing! (Moving to the UK did not help at all, but this stuff has been going on, to a varying extent, for a long time.) After honestly keeling over a couple of times, I mostly started staying inside when the temperature was over 70 or so. Even in Virginia, if you’re spending most of the summer hiding in air conditioning, you will not be able to synthesize much/any vitamin D. That can set you up for a lot of serious problems, right there.

And these connections are rarely made, and the symptoms are much more likely to be dismissed if you are considered to need psychiatric medications or are otherwise neurodivergent. (And/or if you are a woman.) In one study, 90%+ of immigrant women known to be in a high-risk group for vitamin D deficiency and osteomalacia were initially dismissed with a diagnosis related to somatization–and this was without already being perceived as mentally ill.

There is also the popularity of psychogenic non-epileptic seizures as a diagnosis–with at least 75% of patients who get to hear that being young women:

Seizures in the absence of abnormal EEG-video monitoring readings are widely believed to be caused by sexual abuse.44 This is in spite of the fact that an EEG only measures electrical activity on the first few millimeters of the skull, with even skull and scalp thickness producing variations in readings.45

The quote comes from a good takedown, looking at how the idea has developed over time, despite the absolute lack of empirical evidence supporting it: Psychosomatic explanations for disease. (ETA: They’re pushing microbial hypotheses pretty hard, but the overall point stands: instead of trying to make sense out of more complicated patterns and investigate cause and effect there, it’s much easier to take the “I’m not confused; you’re just crazy” approach. It takes some interesting cultural themes to make this look remotely reasonable as a way to deal with illness–including lingering mind-body duality, with very little idea how to reasonably connect the “two” things.)

All this stuff will give you psych symptoms, which are heavily stigmatized and often misdiagnosed/mistreated. If you are struggling to cope because of autism already, this can look exaggerated and very seriously affect your functioning–which is liable to get further misdiagnosed and mistreated.

It all works together, unfortunately.

ETA: A thread that helped me look into distinguishing between akathisia and epilepsy: Crazy On Zyprexa Anyone else?. I had exactly the same kind of experiences people describe there–down to a really freaky reaction when I stopped taking Klonopin/clonazepam, which is also used as an anticonvulsant (and made me feel a lot better, yeah). A thread on hyperfear/ictal fear from the same forum. (Not so fond of some of the emphasis there, but they do know their stuff.) I get panic attacks too, and this is not the same. ‘”When a panic attack — isn’t” is spot on for me, 3 mgs Ativan does not phase it.’ # Erm, yeah.
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* Kind of hard not to connect–and very frightening the first few times it happened!–when you start getting muscle twitches and crawly sensations marching down your limbs, hand/arm/leg/foot jerks, and weird throbbing tooth sensations to the rhythm of the electronica! I have been prone to “migraines” and light shows/visual distortion in response to certain kinds of music all along, but Christ on toast…

Interestingly:

Other researchers have recorded neuronal activity from the temporal lobe of patients undergoing brain surgery for epilepsy. During this study, awake patients heard either a song by Mozart, a folk song or the theme from “Miami Vice”. These different kinds of music had different effects on the neurons in the temporal lobe. The Mozart song and folk song reduced the activity in 48% of the neurons while the theme from Miami Vice reduced the activity in only 26% of the neurons. Also the Miami Vice music increased the activity in 74% of the neurons while Mozart and folk music increase the activity in only about 20% of the neurons. Some of the neurons had action potentials that kept time with the rhythm of the music. Although these results do show that the temporal lobe is probably involved with some aspect of music, it is unclear exactly how this area of the brain is used in the appreciation of music.

That page has more intro-level information on music and the brain (temporal lobes keep coming up, yeah).

I am a “savant”-type (*snort*) musical thinker anyway, apparently. This ready not-so-pleasant response just seems like the other side of that particular coin. Unusual temporal lobe behavior seems to have a lot to do with the way I am, in general, the more I read about it. Is this inherently a problem? Depends on your perspective. I could really do without the apparent tendency toward seizures, though.

One Comment leave one →
  1. January 9, 2014 8:00 pm

    Urgh, neuroleptics! Hate ’em. Don’t do anything *helpful* (if you’re taking them, anyway), Horrible side effects – actually make the visual stuff come through More, and you feel truly depressed on top of that.
    Years after getting shut of Those (all this was years prior to being diagnosed as ‘autistic’) I get diagnosed with ‘sensory integration dysfunction’ – more drugs. ( Neurontin and Valium, and a #lot of both)
    I’m falling asleep ALL the time, and I don’t like it much – but I’m not bothering the Normie’s nearly as much, and their cussed noise ( audible and otherwise) isn’t drilling into my skull like it usually does!
    I had to get off of those some time later; the withdrawal syndrome, compared to kicking neuroleptics, was ‘easy’. (cold bird with psych drugs looks close enough to kicking Heroin that it fooled a long-expereinced ex-junkie in my case…)

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