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21Jun/134

My latest hilarious/traumatic epileptic seizure

This blog post is going to be quite a downer.  Instead of waiting until my latest seizure becomes another funny story (like those captured in this article I wrote for BBC Ouch recently) I'd like to take a moment to capture the true horror of a complex partial epileptic seizure - for me and for those around me. I've thought about this and about the process through which I rationalise and try to cope with what happens to me long and hard, and I find it pretty interesting how my coping mechanisms put a spin on my experiences.

So, let's compare and contrast these two stories.

Story one: DRUGS!
So I had a complex partial while waiting at my bus stop on the way home, and must have decided in the midst of it all to walk home because I came to walking along a road close to my house.  I can't remember much but I sent a load of texts to my boyfriend and even spoke to him on the phone - when he asked where I was all I could say was "pavement".

It was one of my most classic seizures: a real blinder.  During my ramble home at least two funny things happened.  First I walked up to a drug dealer, gave him a flower and screamed "DRUGS!" in his face before calmly walking away.  Then a guy tried to mug me (never a good idea, since the time I lamped a mugger with my bicycle D-lock and drew blood) so I kicked his bike over and apparently screamed "DRUGS!" again.  Hey, it was dodgy, but I'm totally fine so it's going in the archive right next to the time I bought 34 pints of milk.

Story two: Confusion and exhaustion
My bus was half an hour late and I was tired, hungry and absolutely knackered - which triggered a complex partial seizure.  I'd tried ordering a taxi but there was a waiting time of over an hour: on reflection I should have waited.  Instead I came to an hour later, a short walk away from my house (having walked over three miles) with a painful arm and an incredibly grim post-ictal epilepsy hangover.  The first thing I got was a call from my boyfriend on my dying phone - I'd been texting him gibberish and was unable to describe my location coherently by phone so he was freaking out.

He was on his way up from his parents' house in Crewe, still in his pyjamas - he was so worried about me that he wasn't able to drive, so his dad drove him for the hour-long journey while he kept up contact with me on my mobile.  He made me take my medication, put me to bed and then had to leave.  Both of us cried (obviously he did so in an incredibly manly way).  I slept for sixteen hours, and was so exhausted that I had to take the next day off work - I could barely string a sentence together.  It took me two days to get back to my normal state of mind.

I'm still coming to terms with the fact that I walked on my own through an incredibly rough area of Manchester and that someone even attempted to mug me when I was, essentially completely vulnerable.  Anything could have happened to me.

Both of these stories are equally true.  I know which one I prefer, but on reflection it's important to remember the other one too.  There's nothing I can do about it, except try and get a taxi when I'm feeling ill, eat regularly and to try and make sure I always take my medication.

Epilepsy is very hard.  I find it worse to deal with than the depression I've had to deal with previously, because I can see that coming and at least retain my consciousness while I ride it out.  Also, people understand depression - even, to an extent, people who haven't experienced it.  During a complex partial seizure I completely lose control: I could be hit by a car, mugged, or much worse.  Even simple partials are terrifying: I see shapes, and experience emotions other people can only feel during the worst kind of LSD trips.

And when I tell people I have epilepsy, I don't see the instant comprehension in people's eyes that's there when describing depression: only fear and confusion.  There's so little understanding of what epilepsy really means.  Am I going to drop to the floor and start foaming at the mouth, or do I just doze off for a few brief seconds like small children with "petit mals" do before they grow out of it during puberty?  Neither.  The truth is - well, either more hilarious, or more traumatic than that.

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  1. Hey, whereabouts in Manchester do you live, I live in Leeds, and how old are you may I ask? I turned 18 on Saturday, and from what I’ve read, I seem to have the same sort of epilepsy and symptoms/seizures as you do. My ep. is caused by a benign right temporal lobe tumour.
    Kate

  2. Do you have any advice on how to talk to your neuro about temporal lobe epilepsy? It’s really a long story, but your really lucky to have gotten the treatment you did, when you did. I was carted off to be institutionalized, multiple times. In the middle of seizures I would often attack myself, which never faired out well, but when your sitting in mental health court completely sane and they’re trying to cop you out as insane, it’s a total loss of control on your part. I am sane, and it’s not that whole “I don’t know I’m insane” deals. LOL. When I started doing stuff and not remembering it. Checking my mail, talking on the phone, driving to emergency rooms and just standing there and not talking. I wasn’t told “Oh maybe you have a seizure disorder”. I was told that I had multiple personalities and it was them that was doing those things. =/ I was very depressed, because I couldn’t control my body and so I got given this stigma of “mentally ill”. But it’s funny because at times, like right now, I’m probably more sane then any person I know. I’ve been given so much psychiatric treatment that I’ve had time to work through any issue you can hand me. Self esteem, check. Family dynamics, check. etc, etc. So when I got put on topamax and everything suddenly got clear and I stopped attacking myself and driving around to random places (mostly, lol), and I stopped falling down to the ground multiple times a day, I wanted to know why, so I made an appt with a neurophysiologist, and he basically said “If everything has improved why are you here”. As someone with a seizure disorder you know there is always room for improvement and why would he let a psychiatrist determine that? And then he said “for this type of seizure disorder to exist, it would be extremely atypical”. But I’ve read other cases online and you apparently suffer from it too, so it may be atypical, but it does exist. Not all seizure disorders froth at the mouth. So I was wondering if there is some way that I can work with him, some way that I can educate him? Because I have really crappy insurance and I can’t go get a second opinion. He did agree to a ambulatory EEG. But I really need him on my side, because I can not be released back to the apes that actually put me in padded cells and tied me to beds during seizures.

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