Non-epileptic seizures meet a bad, bad migraine

On Thursday morning I had a seizure. It’s not the first time, it won’t be last and it wasn’t entirely unexpected. I have a lower seizure threshold than most people, but thankfully not low enough to cause regular seizures. It just means that I cannot take any medication that lowers the seizure threshold, like some anti-depressants without it causing seizures. I get reflex anoxic seizures, but they’re not really seizures, just fainting spells that look like a seizure. I have had the rare misfortune of  suffering from migraine-triggered seizures (migralepsy) on occasion, which complicates it a little further, but I think the problem is my heart not my brain, which I find reassuring.

I used to think of seizures as something that happened to someone else, the image of a girl convulsing on the floor (My first introduction to epilepsy was through a book about a girl who has seizures) was pretty much it. Now it’s a dissociated moment in my head. Having a seizure and watching or imagining someone else having a seizure are two very different things. Mine starts with an aura. For me it’s almost always an overwhelming sense of unfamiliarity, the opposite of deja vu.

I remember the first seizure I had. I was 17-ish, standing in the kitchen by the sink, drying the dishes and I looked down at my hands and although I knew it was my hands and knew that the cup in my hand was familiar and I had seen it a thousand times, it felt as if I’d never seen any of it before. My hands were not mine, the kitchen was alien and I was perplexed to discover this sense of complete detachment that I didn’t know was possible. I’ve felt distant and withdrawn and emotionally blunt, but never like a stranger in my own body, in my house where I knew the texture of every surface. Migraine auras or low blood pressure now sometimes recreate that feeling, but a tamed version that doesn’t upset me as much. Most of the time I don’t mind feeling a little lost once I realize that’s it’s just my brain glitching and it’ll pass soon enough. Two or three times a year, usually in the summer months when it’s hot and I can’t sleep and never seem to drink enough no matter how much I drink and I am placed under a lot of pressure, that full-blown extrinsic sense of lost self catches up with me and I have what feels like a few seconds to come to terms with the fact that I’ve lost control and there’s nothing I can do about what’s about to happen. I black out.

I think it’s a good thing that I’m unconscious for a big chunk of it. It’s the type of unconscious that is so thick that there is no sense or memory of it when it stops. I was standing and now I’m on the floor and logically I realize at some point that I must have missed out on time, but I don’t realize it. It’s like blinking, mostly you’re unaware of it happening and it doesn’t feel as if you’re eyes are shut, only the blinking/unconscious part can last for seconds to minutes but it will always feel like it wasn’t really there at all. I’m not aware of what happens. For me, there is just a gap in time.

I recall somewhere in the chaos and disorientation afterwards that my head hurts and sometimes I recall or imagine that I do, how it felt like someone is hitting it against a wall again and again, but I’m not sure if its a wall or a floor and there is nobody there. It’s like drifting in space, no sense of direction, no visual clues to orient myself and decide what is up and what it’s down. I’m just in the moment, lost, unable to muster the capacity to be more than just impulses. There’s no thoughts, no words, no questions, no concerns, no real emotion, just the sense that it hurts but I can’t quite tell what hurts or if I still have a body and the irrefutable logic that this is all wrong and I should be doing something to make it stop, but even that thought I can’t hold on to. There is just fragments with no context and then there’s nothing.

It takes a while to realize I should call Chris and figure out how the phone works. I don’t really remember time passing. The moment is disjointed images, sounds, fragments of emotions, slithers of impulses and it feels like no time at all have passed but it was 7 a.m. and now it’s noon. I must have fallen asleep. I still feel very tired.

Chris comes home and does what he’s suppose to do. Check that joints are all in place, make sure the bump on my head isn’t bleeding, give me more water to drink, put me in bed, make soothing noises, stroke my back whilst he tries to get information out of me. What happened? When did it happen? How are you feeling now? I am not sure. Now, my head just really hurts.

The headache part of a migraine is in full-swing and all I want is to curl up into a small bundle in a dark and quiet room and go to sleep.  I curl up in bed and Chris calls in to work to arrange time off to watch me. I don’t like being watched under normal circumstances, but there’s something immensely reassuring when you’re disoriented and confused to wake up and have someone there who says ‘hey sweetie, how are you feeling?’

Time stops for me. All that exists is a migraine so intense I loose focus. Four days of incoherence follows. For a few hours here and there I am present enough to talk in full sentences and spend a little time talking to a few close friends who don’t mind that I miss out words and can’t spell. I can never talk properly during a bad migraine.

The rest of the time I try to sleep, try to listen to an audio book, watch a few episodes of Chuck when the headache lets up enough to allow for the watching of television and am watched by Chris to make sure I’m okay. The weekend is pretty much a blur, except for the odd few hours of complete clarity here and there and not being able to sleep hasn’t helped. But it’s raining now, the headache is dissipating and temperatures are down by almost 10 degrees. I’m getting a little tired of the ‘what’s gone wrong now’ streak until I realize that it’s not so much a streak as a way of life. Gotta learn how to roll with the punches a little better.

I don’t like loosing consciousness. It always feels as if I loose a little bit of myself alongside the little bit of time I loose. I don’t like drawn out migraines. They swallow me whole and spit me out in pieces. It takes time to rebuild, after. Time to find my sense of self. Time to realise that the world is getting bigger than just an awareness of pain. Time to take a deep breathe and relax. Torture is over. Until the next time.

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  1. I know no one who rolls with the punches better than you and Chris do, Lil. I hope you feel better soon.

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