of seizures and…well, that’s it, really

When I was at the podiatrist’s office last week, I received one of those checklists with various diseases and disorders listed on it, ones on which you’re supposed to check yes or no and then say who in the family has or had the disease/disorder/whatever.  I checked the usual — diabetes, mother; high blood pressure, mother; cancer, father — and everything else was a “no.”  The nurse remarked that I was really healthy, but without illnesses like AIDS, sickle cell anemia, and mitral valve prolapse, I guess I am pretty healthy.  However, one thing the sheet didn’t list that other doctors’ offices list was epilepsy — the one thing I do have, besides depression and anxiety, that I take medicine for.

I wasn’t too worried about it, but decided I’d better tell the doctor “just in case.”  He seemed surprised, too, that it wasn’t listed — surely he’d thought of it before?? — but marked it down, and asked if it was controlled.  I answered that it had been nearly two years since I had my last one, then realized that my last grand-mal, tonic-clonic seizure (the kind everyone associates with the mention of seizures, the convulsive kind) was June 27, 2008.

That’s pretty awesome.  The anti-convulsant I’ve been on since that third seizure of 2008 and the second one in thirty days of another has been wonderful.  I’m still not sure if they’ve made me gain weight or if my metabolism’s just slowed down, but I’ll take a little weight gain in exchange for being able to drive and generally live my life without having to constantly spot a safe area anywhere I am in case of a seizure.

Seizures are pretty weird things.  If you’ve never had one, it would be hard to imagine, I guess.  Most of the time people have auras or feel seizures coming on, and if you’re lucky enough to have this occur and you can recognize the symptoms, it’s almost never serious.

Basic run-down of seizures for those who don’t know: you seize for a few minutes — most seizures last no more than a minute, maybe minute and a half, but they seem to be forever to anyone witnessing one, especially a parent, or so I hear — then after the neurons stop firing crazily, you appear to be unconscious or asleep.

Then you wake up, and I — and other epileptics/seizure patients — never remember this — but apparently you wake up and look around and probably try to get up (as I almost always do) but, as a parent of an epileptic person described it, “there’s no one home.”  My mom describes it as me “looking like I’ve done drugs” and have the really weird, spaced-out look with huge, dilated pupils.  It’s said that the mind is like a newborn’s at this point — you don’t talk intelligibly, and you can’t really use any kind of motor skill deliberately.

Then you really wake up, and this is when the panic sets off for me.  After my first seizure ever, on May 24, 2003 (the summer before my freshman year of high school), I had just seen The Matrix Reloaded with my “boyfriend” (same one from the last entry) and was playing a driving game.  The next thing I know, I was waking up on the floor and thought I was in The Matrix itself.  Everything had this greenish hue, and people seemed to be made of those numbers and things from The Matrix.  It’s pretty funny, looking back on it now.  But I remember telling the paramedics to “shut up,” and to this day, I’m really embarrassed about it, even though we learned in First Aid & CPR this semester that in emergencies, people almost always act irrationally.  There’s just something in the mind that fires off.

Almost five years later, on January 4, 2008, I had my second seizure, probably caused by a combination of stress of a horrible experience with a thyroid scan and an idiot nurse —  who dug in my arm for minutes trying to get the vein instead of, you know, going to the other arm, which made me feel faint, as I HATE needles — and lack of sleep.  Luckily, I hadn’t driven myself and in the car on the way home, I had the seizure, but we weren’t far from the hospital, so Mom just turned around and took me there.  I woke up sobbing.

Same goes for the third and fourth seizures I had during the Summer of Seizures — both of which happened outside/at the daycare where I worked (probably a sign I shouldn’t have worked there??  I don’t know); the first one I knew was coming and made proper arrangements with the help of Joseph, but the second one I brushed off as me just feeling weird before I actually had the seizure.  Both times I woke up crying hysterically — once in the ambulance, and once in the emergency room.

Epilepsy is really weird.  For months afterward, I smelled the antiseptic, vinylesque-seat smell of the ambulance at the weirdest times for no reason.  I assume just my mind remembering the experience and triggering the scent?  I have no idea, although I’m pretty sure my neuroscience-major best friend could tell me.  I’ve had brief moments during which I thought I was about to have a seizure, because my mind would be “jumpy” as it often is before one, or I would get dizzy and have to crouch down while I would shake — although this may have been because of low blood sugar, which I also experience.

I wish I had realized the significance of June 27 when it came this year; I totally would’ve bought myself a cake or something (and maybe sent my neurologist one, too — hah!).  Oh, well.

So, in summary: seizures are weird, epilepsy is weird, and I hate that I have it, but it’s definitely an interesting experience and one that’s definitely tested my resolve and the physical strength of my mom’s heart.

If anyone wants to see cool pictures of my tongue-bruise (I didn’t even know tongues could bruise) after my first seizures, here they are–
Exhibit A
Exhibit B
Exhibit C
Exhibit D

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3 thoughts on “of seizures and…well, that’s it, really

  1. My mother has epilepsy, though hers is more the black-out-and-hit-the-ground kind than grand-mal. I was a kid, maybe early teens, when she was diagnosed — that in itself was kinda scary, because at first they thought she was having a breakdown or something and tried to put her in an institution for a bit. It wasn’t until later that they pinned it on epilepsy.

    It’s a bit of a running gag in my family that bathroom appliances are fearful of my mother — the first few times she had a seizure, it was always really early in the morning (2 to 4 a.m. or so). The first time she destroyed the toilet when she hit it; another time she cracked the inside of the shower. I guess it’s a good thing my genetics carry a propensity for hard skulls.

    • That IS scary! Glad it was something that’s manageable — or is she on something that manages them? — and not a breakdown.

      Yeah, one time I fainted in high school, and my mom thought I was playing around (like I do) so she didn’t think anything of it. But I had no recollection of how I’d gotten on the floor or anything. I still don’t know if it was part of my then-undiagnosed epilepsy or just one of my fainting spells (unfortunately, I have low blood pressure, so I faint easily).

      When I had my first seizure, I had to do an EEG, of course. It showed “epileptic tendencies,” but we didn’t like the pediatric neurologist I had — he was patronizing, among other things — and so we declined any medicine. I went seizure-free for four years, like I said, and luckily when I had my third seizure, I went to a neurologist I really liked and have stayed with since. Apparently epilepsy is given as a diagnosis if you’ve had two or more seizures, so I guess that’s why they didn’t officially diagnose me when I was thirteen.

      Whatever happens, I’m just glad my body’s seemed to calm down for now. I just hope the Lamictal keeps working. I’m lucky in that I’ve never hit my head or anything while seizing or falling. I did hit it the first time at the movie theater, but never since then. And I’ve never lost control of my lower half bathroom-wise, which is good. I’d be SO embarrassed. However, this girl I used to talk to online has epilepsy, and she said every one of her seizures has happened when she was on the toilet. WTF?

      • She was on meds for it for a while — I don’t remember what it was called — but she hasn’t had one in so long that the doctor said she didn’t need to take it anymore.

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