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So today has been the awesome day of writer's guides (warnings for triggers as per what the guide is talking about), which I found super interesting in an autobiographical way, as well as really useful for when I write about things I haven't, myself, experienced (without having to do them!) :D

Writer's Guides
-Ecstasy by [livejournal.com profile] apiphile
-Meth by [livejournal.com profile] jumpthesnark
-Marijuana by [livejournal.com profile] strangecreature
-PTSD by [livejournal.com profile] rachelmanija
-Dear [not just urban fantasy] authors by [livejournal.com profile] kaigou (a guide to street/fringe life, with good guides/rants for - and warnings applicable to - gang and drug culture, the hardcore scene, weaponry and why it gets used, living with no money, child abuse and a host of other things)

Not only was I very impressed with all of these, I thought, "I wish I had something to contribute! I haven't done ANYTHING! My life isn't exciting."

Well, there is one thing I can talk about with some expertise. I don't know how frequently it comes up in fanfiction or original fiction, but there are certainly some myths to dispel, and I don't mind at all my experiences being used to write fiction with more accuracy, so.

Shiver and Shake: A Guide To Epilepsy


Credentials: I have what is diagnosed as Juvenile Myeclonic Epilepsy, which basically just means I have myeclonic (among other) seizures and I was diagnosed before the age of 18. My seizures take on three different forms, which I'll talk about further down the page. My mother also has seizures, some of which I've witnessed, and I can talk about what a seizure looks like to an outsider, as well as the experiences of my loved ones who have seizures.

Disclaimer: I am not a doctor. While there is advice in here, I do not recommend using this guide as any kind of medical text. It is merely meant to give you some idea of the personal experience of having epilepsy as well as dispelling some all-too-common myths. If you have seizures, please go see a board-certified neurologist and follow their advice. If someone around you has a seizure and you haven't been given other instruction, contact a doctor immediately.

So, at first I was unsure about whether or not to write this. I thought, "does anyone even need a guide to epilepsy?" and "will my flist really want to hear all the weird and uncomfortable details about my life?"

And then I thought, "dude, people think that you can swallow your tongue", and the answer became clear.

So let me start this little memoir by stating something in no uncertain terms.
You cannot swallow your tongue.
Even if you're having a seizure.
There are lots of other things that can happen if someone is having a seizure.
But please, never write that they might swallow their tongue (unless it's from the point of view of someone that's supposed to not know crap about seizures) and for the love of god, if someone has a seizure in your presence, never put anything in their mouth. People seem to think shoving tongue depressors in the mouths of seizure victims is a great idea. NO. JUST PUT WHATEVER IT IS DOWN.

Okay! Now let me hit rewind. We'll dispel some other myths later, but I think I'm going to do this mostly from my point of view, and so to start off, we're going to begin at the beginning.

How was I diagnosed?
I was 12 or 13, and home sick from school with another of a series of migraines. In retrospect, I suspect that I was probably on my period as well: we'll get to why I think that in a minute. I remember vividly that I was painting with watercolors, a picture of a girl leaning on a fence, or something.

Suddenly, my hand jerked. Just a little, not enough that I could really tell if I'd done it, or if my hand was cramping. I stretched my hand out. My finger felt like it was twitching. Just a little, like something not-me was tapping it up and down. I felt a little bit like I was going to throw up -- what the hell was going on? Was my hand just cramping from holding the paintbrush too tightly?

At this point, I got up and sat in front of our full length mirror. In the mirror, I couldn't tell whether or not my hands were moving on their own. I felt totally crazy. My dog came and tried to nose at my face - she knew I was upset. I felt other muscles tensing: I felt like my whole body was tensed up, but I couldn't tell if any of them were actually moving.

I tried to convince myself this was all in my head. I sat back down and painted for a little while. And then my hand jerked across the page, leaving a blue streak behind it. Something was definitely wrong.

I ran to the phone and paged my mom in the middle of a meeting at the children's hospital where she worked. She called back a few minutes later. "Mom," I told her, "Something's wrong with me."

The next several months are a whirlwind of doctor's visits and referrals. I was referred to a neurologist at the hospital where my mother worked. She was totally friendly and made the whole process much easier.

I was tested using an EEG - an electroencephalogram. This is a lovely process. Basically, you sit in a chair. Someone, probably a registered nurse or resident in the neurology department, scrubs down sections of your scalp and attaches little wires to your head with sticky goo, all over, and to your chest.

Usually, in my experience, these are done sleep deprived. Sleep deprivation is a big agitator of seizures, and the goal of the EEG in this case is to do just that. You're put in a dark room. Sometimes they specifically ask that you close your eyes, sometimes not so much. At first they just get a baseline. What they're measuring are the electrical waves coming from neurons fired by your brain. When those misfire? Seizure. Well, seizure "activity".

So you sit for a long time in the dark. Then after a while, they turn a strobe light on in your face. This will go faster, faster, faster and eventually they'll turn that off. Then they make you hyperventilate for two minutes (well, I think it might have been shorter as a kid). Big, full, deep breath as full as you can - blow out as hard as you can. Keep going. Not fun.

What they measure is where the electricity spikes, and how it lines up compared to ranges of seizure behavior. This comes back with a negative or positive diagnosis of epilepsy. For me, of course, it came back positive, and I was diagnosed with Juvenile Myeclonic Epilepsy, which basically means I have one out of a number of certain kinds of seizures, one of those is myeclonic jerks, and I was under the age of 18.

EEGs can also sort of give you an idea what to avoid; for example, many people are triggered by strobes, but I (at least, as a teenager) seemed not to have problems with them, although I think it's just the speed of a real strobe light: slower light-dark alternating, particularly sun coming through lines of trees in my peripheral vision while riding in someone's car, makes me feel like I'm having absence seizures.

Wait, what are absence seizures?
Speaking of which. I think it's time we dealt with the word seizure.
Most of the time when people talk about "seizures", they're talking about "generalized tonic clonic" (grand mal) seizures; full-body convulsions. This is not the only kind of seizure. There are a ton - you can pretty much have a seizure that starts anywhere you have, well, brain matter, and all of them are different. But I can speak from my experience.

Around the same time I found out that I had epilepsy, I found out that I had seizures when I was a very little kid. This is not uncommon, actually; many children have seizures when they're little and grow out of them. Not everyone gets them back: yay me.

The seizures I had had at that time were called absence seizures (say it the French way: ab-sahns) also known as petit mal. In an absence seizure, you lose consciousness for anywhere between a hundredth of a second to several seconds at a time. Some kids' eyes roll back in their heads. Many people just stare. Many children have them and grow out of them. As a child, most people are not aware of them at all, although if they persist into adulthood, they can both become longer and something you're more aware of.

My grandmother recognized it in me because both of her daughters had them as children. She caught my eyes rolling back and told my mother what was going on. I don't know that I was ever medicated, though: I guess they assumed I'd just grow out of it and that it wasn't affecting my life.

Absence seizures are hard to describe, because they're...like nothing. Nothing happens. I am not there. You are talking to no one. That's the easiest way to describe it. If you're blind, what is vision like for you? Well that's basically what I experience during a seizure. Or used to.

I've never had the experience of someone starting a sentence and then me coming back abruptly into them still talking, probably because my brain is kind enough to mask experiences that would feel a lot like going crazy as being kinda ADD. (I do "zone out" and realize I "wasn't paying attention" an awful lot.)

However, I have had the experience of someone looking at me expectantly and me realizing I entirely missed them asking me a question. I also will abruptly stop talking in the middle of my own sentences and come back in to people looking at me like, "....and?" (It's really fun to do that at open mics. >:|) One of my friends once saw me at the library and came over to say hi, only to realize I was staring blankly at the computer, not doing anything. ...and then I had to explain this stuff to him.

These days, whether it's because of a certain medication, or just getting older, I'm more aware of the seizures, which has its pros and cons. On the one hand, I'm not totally unaware that this occurs. On the other hand, as you might expect, hearing someone say something to you, and watching yourself sit there and not respond, or stare at them while your brain struggles to make a coherent reply, is if anything possibly more embarrassing than just not being aware they said anything to begin with. Additionally, there's some confusing parts where I'll mean to say something and not finish, or, in post-seizure confusion over where I am in a sentence, and aware that I sometimes drop the ends of things, I'll repeat the end of a sentence or ask, "did I tell you this already?"

(This confusion has similarities to "post-ictal behavior", which is the fuzzy, often unintentionally hilarious behavior after a general tonic-clonic seizure.)

My brain seems to be especially triggered by people asking me a question - like it's not quite able to get from point A (needs to formulate an answer to something) to point B (has the answer) to point C (verbalizing the answer), so half the time if people call my name, or ask me what my order is, or ask if everything's okay, I go totally blank.

I kind of have general attention problems due to my seizures and to my medicine (bonus: medicating seizures effectively can cause severe focus problems ...as if that wasn't already an issue), and sometimes this even shows up in my internet behavior. Although it's easier to control in writing, people who know me well know that sometimes I'll totally forget to finish a sentence in my comments.

So those are absence seizures. I'd had those since I was 4, took a short break, and they had come back along with these new, twitchy seizures. The new ones were a totally different type, called myeclonic jerks. Myeclonus is actually something you have probably experienced: as hiccups or muscle twitches when you're falling asleep. In people with seizures, myeclonic jerks often happen at night and in the morning, and Wikipedia tells me that they're usually symmetrical (ie, occuring on both sides of the body at the same time), but that's not true for me at all: it can happen but by no means is it the more common option.

They can be visible - it's a little creepy to be wearing a short dress and see a single muscle in my leg jerking, let me tell you - but they can be so small that it's very hard to see. They're most noticable with pen dropping and scrawls on the page, especially in (morning) classes, because they happen most frequently in the hands, followed by the legs. My most frequent myeclonic jerks are in my second and third fingers, and they just curl in at the first or second knuckle, like wincing.

In my experience, especially since being medicated, myeclonus is something I can feel before it actually happens, eg, I can feel my muscles tensing before I actually have a jerk. When I'm extremely effectively medicated, I can feel my muscles get a little tense, but nothing actually happens, which my neurologist says is pretty common: that's exactly what is happening - you see the spike on the EEG start, but then normalize.

And then there's generalized tonic clonic seizures, also known (outdatedly, but I'm going to refer to them that way because both doctors and laymen know them that way, and it's shorter) as grand mal, or what most people think of as seizures.

For most of my teenagerhood, I was adamant that I didn't have grand mals. Part of this was because, well, I never had had one. It was entirely possible that I never would have one, according to my neurologists, and though it was equally possible that I might, I was assured that they were totally different kinds of seizures than my myeclonic and absence seizures.

So for my own presence of mind - because my mom's sister died after a grand mal, and for the first year of my diagnosis I was terrified to be alone because I thought I might have a seizure, hit my head and die, or something similar, by myself - I convinced myself it was never going to happen.

It's also a good thing to convince yourself when you're a teenager who wants to someday drive. I shouldn't drive anyway, but that'll come later.

And of course, there was the part of me that wanted to be a rebel. Everyone thinks of seizures as grand mals, so I wanted to be the person who doesn't have them.

Well, I can say quite assuredly that as of this summer, I do.
My first generalized tonic clonic was in late May, during the last week of school, and my second was at the end of June. We don't know why they happened. No one knows why any seizures happen. But a combination of stress, lack of sleep, lack of decent hydration, poor eating and hormonal changes were going on during both those time periods, and those were all certainly factors.

What I can tell you is what it was like.

You remember when I said absence seizures were like nothing?
Think that, but moreso. With a hangover.

The first time, I had been playing with my new rat, on the bed of my dorm. I woke up sitting in the hall of our dorm building, on the stairs. The door was open, because I could feel the breeze, and there was an ambulance siren going, and my face hurt, and I was really confused and I felt like I was going to throw up and my entire body felt tense and dizzy.

Jessi was telling me I'd had a seizure. I'd wet myself, which happens (but not always), and she helped me change into...something (which I totally don't remember at this juncture, but I remember the fact that I wasn't wearing underwear getting really awkward later at the hospital when they made me wear those nothing hospital gowns). I'd also bit the shit out of my tongue, and my knuckles were bruised.

And then I was being put into an ambulance. Fun times. If having a seizure isn't disconcerting enough, being strapped to a stretcher and hauled up into a truck is kind of weird in of itself. They put an oxygen mask on me, and the EMT made polite conversation (and made fun of me when I said "Chicago" when he asked me what state I was moving to :(!!), started an IV and unloaded me in the ER.

Where we sat. For five hours. At various points I was brought up to have my head CT-scanned (just in case I had, you know, a secret brain tumor), given morphine for my, granted, very tender cheekbone bruise and budding black eye (really. morphine. budding addicts: get punched) and sort of allowed to chill out for four hours while people came in and out.

I don't have a spectacular memory of it, but mostly Jessi and I hung out in the ER eavesdropping on the super-dramatic conversations next to us. And then I had a black eye for like, two weeks, which was fun.

The second time (eg, about a week ago), I didn't even wake up until we were in the ER, or just getting there, because we live really close to a billion hospitals now. This time, no wetting my pants, and very little biting of tongue, actually. Score. Also, totally sad that that's a big plus in my life. But I did slam my head on something (we think the floor when I fell), on the opposite side from last time, and that shoulder. So now I have a still-healing (though not still-bruised) cheekbone on one side, and a black eye on the other side. And my shoulder is fucked.

The hospital visit this time took eight hours, at the end of which I was actually crying I was so tired, and I got yet another CT scan and an X-ray of my shoulder, which felt broken but was, thankfully, not so much. No morphine. Three vials of blood taken by the worst phlebotomist ever.

And, the fantastic experience of starting to have another seizure in the ER and being aware of it. This happens sometimes, but it never has to me. Docs are really twitchy about people having more than one seizure. It's called status epilepticus, and it can lead to big long seizure chains, and fuck with your brain, and they really try to avoid it at all costs. So they gave me Atavan, which, among its many other uses, is a short-acting anti-convulsant, and it cleared up. BTW: never, if you can help it, need to get Atavan in an IV. It BURNS. Morphine itches, Atavan burns.

But yeah, then I went home. Having only had two grand mals makes me actually pretty lucky, as epileptics go. My mom doesn't even go to the ER any more when she has a seizure, unless she has more than one, or hits her head. That's pretty much par for the course if you have epilepsy: it's not necessary unless you go right into a second seizure

...I just hit my head every time I have a tonic clonic. :\

What is it like for other people to see?
Well, again, I can only speak from experience, and what I've been told.

When my mom had a seizure, I heard her yell (which is common: I also, apparently do this - apparently I sound PISSED and incoherent). I called for her, and she didn't answer, so I ran downstairs. She was lying on her back between the living and dining room, and she was still seizing, her legs and arms jerking erratically. She was foaming at the mouth and her eyes were staring.

I freaked the fuck out, to be honest, and called 911, and they told me to get a pillow and put it under her head, which I tried to do, and not to put anything in her mouth, which, okay, I wasn't DUMB, and to wait for rescue people. Who got there in GREAT NUMBERS. Meanwhile, she was starting to come around, but after you have a seizure, you're really hazy.

This is called post-ictal behavior. Apparently everyone falls asleep immediately after a seizure for a minute or two (which I concur with: she snored a little) and then from there it's a little less blanket statement. In my experience, my mother sort of rubbed her face off and tried to stand up, at which point the EMTs were there and made her sit down, and she argued with them a little bit and was very confused as they told her she had a seizure about eight times.

In my case, the first time, Jessi wasn't there when I had the seizure but she realized what had happened when she came in. She's told me since that after calling 911 and putting the rats away, she told me I had a seizure, and I kept trying to take my medicine and she kept having to stop me because she had no idea what I'd have to take at the hospital. Which amuses me because, seriously? The first thing I think to do is take my medicine? How responsible! I have no memory of it whatsoever.

This time around, [info] modernsaints and Jess heard me yell, and Jess thought it was her, and she thought I was yelling at my computer, and when calls of "what?" got no response, followed by a THUD sound, they both ran out to see me curled up in the fetal position by my computer, seizing. [info] modernsaints called the EMTs, and Jessi got over me so that I couldn't hurt myself, and made sure I stayed on my side so that I couldn't choke on vomit, and there was no hilarious post-ictal behavior because by the time I was even vaguely coming to the EMTs were here.

What about auras? What are those?
I've only experienced what I believe to be an aura once. I partially blame the word "aura", because it sounds like glowing colors, or even the kind of auras that come with migraines - sparkly lights, etc. That's not precisely what it is.

With grand mal seizures, sometimes a fullblown seizure can be abrupt, or sometimes it can take a tri-part sort of approach. In this case, the first part is a simple partial seizure. These seizures affect only a small part of the brain, often the temporal lobe or hippocampus, and do not usually make the sufferer lose consciousness. This is when an "aura" might occur - auras are the beginning of a simple partial seizure. During this kind of seizure, you can experience sudden and unexpected/alarming feelings, emotions, or sensations. This can be fear, anger, sadness, nausea, weird tastes, hearing odd sounds, a strong sense of deja vu or jamais vu (which is the opposite of deja vu - a feeling that people/things that you're familiar with are things that you're seeing for the first time), a hard time talking, a feeling that the world isn't real, etc. Usually this is remembered in detail, which is probably why it's something some people can pin down as the beginning of a seizure.

Some people have temporal lobe seizures or simple partial seizures on their own, but as part of a grand mal, they develop into a complex partial seizure, which affects consciousness and motor function. At this stage, people often start making useless hand gestures like picking at their skin or clothes, or gesturing into the air; they might become incoherent.

And then it becomes a grand mal/generalized tonic-clonic seizure.

Right, so. Back to me. I most definitely experienced a sudden, shocking onset of nausea, a feeling like I couldn't breathe, and dizziness, accompanied with a bitter taste in the back of my mouth, when I was in the ER. The nausea is the part I most remember, along with an insistent feeling that I was about to have a seizure. I had started getting twitchy already in one hand. Then I started shaking, all over, uncontrollably. I told Jessi, and she got a nurse; but mostly I remember thinking, "I'm having a seizure. I'm having a seizure, but I'm awake. I don't understand." as they were giving me the medicine.

This is what I believe to be an aura. Apparently some people have them almost every time they have a grand mal, and can with some reliability say "I'm going to have a seizure" and be taken somewhere safe. Dogs can also sense partial seizures and help their owners go lie down, or go alert teachers in their child's classroom. So they're handy.

They're not so handy to me, because (a)I don't know if that'll ever happen again, and (b)now I strongly associated seizures with nausea and vice versa, so when I get nervous about seizures I get nauseous and when I get nauseous I get nervous about seizures. Totally effing useless.

BUT, they are a good tool for people who can recognize them. Or dogs.

How do you treat it?
Well, treating epilepsy is sort of like treating depression. What I mean is, what works for one person doesn't necessarily work for another, and often what gets done is an average dose of your neurologist's favorite two medications get thrown at you and it gets adjusted until it works satisfactorily.

I've taken (in order)
-Depakote-
which led to getting my blood tested every six months because it can cause serious liver damage, and gaining a lot of weight, and did an average job
-Clonazepam/Klonopin-
which is by far the most immediately effective drug I've taken and my standby for when I'm on my period and having a bad day. Does not make me go to sleep, or even feel pleasantly lazy, really, even though half the dose makes my mom sleep for 12 hours. I lol at people who abuse this drug.
-Zonegran/Zonisimide-
which caused me to go from 210 pounds to 130 pounds in under a year (I'm back up to around 200, so don't go faking seizures) and is totally affecting my focus more than any other drug, but definitely controls my seizures better than Depakote
-Keppra-
This did nothing for my mom, and in its regular form not a whole lot for me, but it does make me into a raging bitch
-Keppra XR-
The wonder drug, apparently. I'm up dose on it since my last grand mal, which means I'm crankyface again, but on the same dose as regular Keppra, it controls my absence seizures far better.

Currently I am taking three Keppra XR, one Klonopin (with a prescription that allows for a second on twitchy days, which I am far too frequently indulging in) and four Zonegran at night and nothing in the morning.

Are these addictive, you might ask? Um. Two days without my normal prescription filled of Klonopin and I was in the ER, freaking out the admitting nurse. Yes. Any of the -azepams will totally fuck you over if you don't take them regularly, even WITHOUT seizures, and trying to wean off Keppra was the reason my mom had her first grand mal in six months. I will probably never be off these.

Which is okay, since I couldn't actually survive off them for very long, probably. Any waxing poetic about wanting to be a Victorian aesthete (or even a glam rocker: this stuff sucked in the 70s, too) is purely hypothetical.

As a side note, you may also notice that many of these medications are also used as anti-depressants, anti-anxieties, anti-psychotics and are in the same family as the above. Yup. ...I don't know why either, but it's true largely across the board. I think it has something to do with the neurotransmitters they affect. No, I have no idea if taking an anti-anxiety pill all the time would affect being treated for my crazy.

What else?
Pretty much everyone in my family who has epilepsy has extra-bad seizures around (especially just before and just after) their periods. Weird trivia, and insult to injury, or vice versa. Half the neurologists I know have not heard of this, but it is an actualfax side effect.

Also, in most states, you can't drive if you've had a seizure in the past six months. I used to bitch about this, as I had seizures all the time and it wasn't exactly provable whether I'd had them or not, but (a) since I've had a grand mal, not so funny but also (b)I should definitely not be driving with absence seizures. Or myeclonics, but definitely not absence.


Um...that's about it. Any questions? Any need for more personal experience? Betaing? Whatever?

Whoa, it's officially my birthday.
And officially time for me to be in bed. Night, guys.

Crossposted to LJ from Dreamwidth
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