[TOPIC] Epilepsy?

Can't help from personal experience, but I know someone who used to have pretty bad seizures. He never remembered afterwards - he just felt like hell and usually slept it off because it was exhausting (although it might have been exhaustion which led to the many of the seizures in the first place). He also found it pretty humiliating, especially if it happened in public, but rarely hurt himself physically, aside from a couple of bumps. He had really bad experiences as a teenager - they couldn't get the medication right, since he was still growing - but as an adult he hardly ever has attacks.

If you're not writing in first person it might be better to use the PoV of a friend to describe the seizure. Or your character could have a fuzzy memory and someone else could explain what happened after the fact.

There are also small seizures - petit mal attacks - where sufferers kind of blank out for a while, but don't have a full seizure.

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i know a girl who may or may not have epilepsy, but does go into seizures a lot -- i don't know what exactly entails it. what i do know is taht she just falls over convulsing and is fine afterwards, if pretty shaken up. the only reason she's ever needed to have serious measures taken afterwaards were whenever she hit her head.

I'm going to hate myself for doing this, but who cares?!

http://www.epilepsy.com/
http://www.epilepsy.com/101/101_epilepsy

There's more to epilepsy than shaking. There are many, many kinds of seizures, and not all of them involve falling down and shaking.

My husband has a specific kind of epilepsy called temporal lobe epilepsy. While sometimes he can have tonic-clonic seizures (what used to be called grand mal), sometimes he has seizures that feel like intense, almost religiously rapturous experiences. He's had it all his life (he'd be jumping on the trampoline as a child, for example, and would just collapse, as though passing out) but a lightning strike exacerbated the situation, and now he has more frequent seizures.

Many epileptics have no idea what a seizure is like. In the case of absence seizures, they just zone out. To an observer, they're sitting, staring blankly, non-responsive, and the person eventually "wakes up" and has no idea what's going on. Other times, they can have a massive seizure and only know they had one because of the aftermath.

The waking seizures my husband has, he's explained to me as losing control of every muscle in his body at once. Like a really, really violent shiver that you can't stop. It hurts, and leaves him achy and sore afterwards.

Please do a lot of research on this.. epileptics suffer from a lot of misconceptions, and discrimination, as a result. And no, they can't swallow their tongues, and NEVER put something in a person's mouth if they're having a seizure.

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I've had several kinds of seizures. They can range from petite to grand mal. I never realized I had the petite ones, someone would have to point it out to me that I just had one because I'd just freeze for a moment or two. Mid step, mid sentence, while eating, while tying my shoes, it would happen upwards of 10 times a day and never really bothered me much. It did get distracting in school when a teacher would be talking and all of a sudden she would be on another sentence. Visual and auditory seizures were trippy. I'd see colors or sometimes not see at all. Hear things or not hear at all. I once got hit by a car because I couldn't see moving objects. Walked right out in front of it. I don't remember the grand mal seizures, only that I'd get this strange feeling doctors call an 'aura' and I'd just know it was coming. I don't have any memory of seizing, what people think of when they think of epilepsy, I'd just wake up hours afterward a little dizzy and confused. Hope some of this helps.

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My sister is epileptic and has had grand mal seizures for as long as I can remember. The experiences for her seizures can be different, but they're usually pretty much the same. She gets a death grip on anything she might be holding onto, or onto my arm or hand, usually she stumbles and almost falls down, and she can occasionally hear us talking to her. When she was younger, she would always describe the experiences as just blacking out. She didn't remember having the seizures, she just remembers waking up on the floor, or with people around her, feeling out of sorts.

These days, she can usually hear us, and has learned to sometimes head the seizures off. If she feels herself starting to go into one, some of the time she can take several deep breaths and steady herself so she can pull herself out of the seizure. That doesn't happen all the time, though; those are just the light ones. When she comes out of it, she's usually very out of it at first. She could be perfectly happy and the two of us are having a conversation in the car or something, then she has a seizure, and afterwards she's falling asleep on me and very confused. It usually takes several minutes (ten to fifteen) before she's more or less back, but even then she's not back to herself. Seizures really tend to just drain her.

I've found that, being an annoying little sister and fighting with her the way we always have, I've accidentally sent her into a few seizures on accident. Something like stress sets her off, but the sound of running water will also send her into a seizure. So either she has to take her chances when she's in the middle of a "seizure cluster", as we call it, and take a shower, or take baths. Even then, just filling up the bath can give her a seizure. But sometimes it's nothing. Sometimes she's just sitting on her computer and she has a seizure, or she has one in her sleep. Her seizure clusters usually happen around the time she's on her period, which I guess would be attributed to hormonal changes.

She's also had to go into the hospital a few times because she went into status epilepticus, which means she was basically having constant seizures, and her medication was no help whatsoever. They put her in the ICU and really drugged her up, not so much so she would stop having seizures, but so, when she did have one, she wouldn't hurt herself. She can have really violent seizures at times, and it kind of looked like she was being beaten when she would be in the middle of a seizure cluster -- especially when she was taking medication that made her lose weight, because she was really skinny and bruised up from hitting her arm against the wall or doors.

The type of epilepsy my sister apparently affects her personality, too. I can't remember what kind it is, though. It has to do with the lobe it's in, and, at least according to one of the doctors she's seen, it makes her more withdrawn and less able to make decisions. Which was strange to find out, because that's been her personality all her life, and I never thought it was attributed to epilepsy.

I also talked to a girl who had a surgery my sister might have, and she had a different kind of epilepsy. She suffered primarily from petit mal seizures, and it started when she was 12. The girl said that she didn't realize at first that they were seizures, because she would just drift off during class and miss a couple minutes without even knowing what happened -- she just thought she was being a dork. She only had a handful of grand mal seizures, and they were when she was off her medication (one time when she was with friends, who didn't know what was happening, and she woke up in an ambulance), or in the hospital getting her brain mapped. She also had a vagal nerve stimulator (VNS) for several years, which actually didn't help because they had assumed she could tell when she was starting to have a seizure, when really she was feeling the after effects of a seizure, and had misdiagnosed things. It kept her from being able to play sports, because every so many seconds or minutes, she would get a pulse and she wouldn't be able to breathe for a second.

In both my sister's and the other girl's cases, they had to go on independent study from school, but that's by no means across the board what happens. My sister has a severe case and we think the stress of school set off seizures that weren't stopped by her medication, and the other girl was having so many petit mal seizures she couldn't follow her classes. But then it could barely ever be noticed. I had a teacher in elementary school with epilepsy, and he hadn't had a seizure in about 20 years. Though, students who'd had him when he had had a seizure said he kind of just went out of it and would mutter to himself, while it was generally known that the student closest to the door was responsible for calling the office should he have one.

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I have epilepsy. I had a seizure the other day, in fact. They're caused by stress and high temperatures, so I get them when I'm ill, but I'm fine with strobe lights.

I have no clue what type I have other than I have grand mal seizures in my sleep and it's not that type that teenagers get. There's no focus in my brain except during the time I have a seizure, which is apparently unusual.

ANYway. When I have a seizure, I have no clue cos I'm asleep. If you woke me up afterwards and told me, I would have an absolute cow, and yell that you were wrong and I haven't had one. It's because my brain's scrambled, because I have never remembered doing this, but I do remember thinking something like "oh, not again" so I suppose it's just denial. Then I go back to sleep.

When I wake up the next day, I'm usually woozy and I have this horrific headache all day. It's horrible.

Other things I have from epilepsy are:

Deja vu episodes - you get deja vu every now and then, right? I get it several times a week. It's because of how vision is wired and when the message that I've seen something arrives in my brain compared to the actual image. Look it up, it's cool.
Tip of the tongue problems - I have a great vocabulary, I just can't remember any of it.
Some other stuff that I'll come back and edit in when it's not so late?

Also I'm on four types of medicine. Apparently it's a miracle that I can function. You've got serious epilepsy if you're on two types.

I've been partially awake one time when I had a seizure. It felt like all my muscles were pulling in opposite directions. Not something I'd like to relive.

OH, and I should add, that when I wake up, I've almost always bitten the inside of my mouth to shreds. My tongue and the insides of my cheeks will be all chewed up. Although, that's been happening less often lately.

I've had several doctors tell me I have epilepsy my whole life. However, when they finally scanned my brain, there is no proof of it. I've been diagnosed, but there isn't any physical change in my brain to prove that that's what I have. I only have petite mal and only every few years. I've been lucky to never have them while driving. A lot of epileptics aren't allowed to drive because of it. The only thing I've ever remembered about them is that I get unusually tired beforehand. And it's an all the sudden kind of tired. One minute I'm fine and in the middle of a conversation, then I feel like I could sleep for a year, next thing I know it's five or ten minutes later and everyone around me is shaking me and talking waay too loud to get my attention. To my knowledge, no one has ever been able to "shake me out of it". Which, if I'm not mistaken, is a bad idea anyway (but my family knows nada about my kind of seizures). My mom used to have seizures a couple times a year (both petite & grand mal), then she got pregnant with my younger sister and hasn't had one since. Before her pregnancy they found all the abnormalities on her brain that seizures are caused from, afterward they were gone. My grandfather (her dad) also has had seizures for as long as I know, his were all grand mal, but they got him on medicine when I was ten or so and he hasn't had one in 15 years.

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I do not have epilepsy that I know of. I do however sometimes experience something like an aura. It only happens once in a blue moon and often when I am stressed and tired. I wrote about it on a forum somewhere else (as it was happening) and no one knew what it was. Then an epileptic posted and said that I had just perfectly described the auras she would get before a grand mal seizure. She suggested that I may have "partial seizures," aka, seizures in a very specific part of the brain that affect my sense of time. I've never had a doctor confirm this, but I do know that when I was little my parents had me checked out for brain wave anomalies of some sort but nothing was ever found. So, you might be able to use this as an example aura or something.

It's basically a sense that time itself isn't moving correctly. Everything feels like it is speeding very fast. I'm still conscious and can control my body movements and hold conversations with other people. However, it makes me feel very anxious, so I tend to do my best to just find a place to sit or lie down until it goes away. Even I seem to think and talk and move fast. Sometimes it's almost like watching a movie with myself in it but that I'm not participating in and can't control, except that I can control my actions, just not the speed of them. I've timed them. They may last anywhere from 5 minutes to 25 minutes. It has only happened once while driving. I pulled the car into a parking lot nearby and just sat there until it stopped. I was late to class as a result. :( It's very hard to explain though. It feels like everything, including me, is moving too fast. It's puzzling because no one else notices that the world is running like a tape in fast forward play and nothing I do can slow it back down. A few times, when I was younger, I walked up to my Dad as it was happening. I told him that everything was fast and then asked if I was talking too fast too. I tried very hard to not talk fast as I did it, but it still felt fast. He looked at me like I was crazy and then informed me that "no, you're actually talking very slow." Seemed a little concerned by my description of what was happening and then just said that it was likely a phase, a glitch, that would go away as I got older. Indeed, when I was a teenager, it would happened almost daily, usually first thing in the morning, whereas now I only have them once or twice in a 6 month span. It may be interesting to note, however, that my Dad's niece has grand mal seizures. So seizures are not unheard of in my family. This gives some credence to the idea that they might be simple partial seizures. As long as they don't get worse, I have no desire to see a doctor and get drugged for it though. :P

I started having seizures when I was 17. I was helping my mom paint the kitchen, and was standing on a cupboard so that I could reach close to the ceiling. Next thing I knew, I was on the floor, surrounded by medics! I have no memory of the seizure, but my mom told me it was bad, and I was lucky I didn't hit my head as I fell. That was the only major (or grand mal) seizure that I ever had. Afterward, it was just smaller seizures as I adjusted to whatever medications they put me on. (I had to switch several times because I'm allergic to some medicines.) I stopped having seizures after awhile, and one doctor said I could go off the medication because there hadn't been any seizure activity showing up in my EKGs. So, for several years I was fine, then the seizures started again--not real bad ones, just incidents where my hands or feet would twitch or jerk suddenly, or I'd have these mini-blackouts that would last a fraction of a second--like flipping a light switch off and on quickly. I could be talking, washing dishes, whatever, and suddenly forget what I was saying or doing. It got to where I knew, upon waking up in the morning, if I was in "seizure mode," because I would feel disoriented, forgetful, couldn't focus on more than one thing at a time, and my hands would jerk or I would miss a step when walking. If I tried working through it, I would get confused and couldn't remember what task to do next. I remember feeling not really "present." People would speak to me and it didn't really register, I couldn't muster up a response quickly enough. Interestingly, if I went back to sleep for a couple of hours, I would usually be back to normal when I woke up, which makes me think the seizures are tied to my sleep cycles, or some part of the brain that controls sleep patterns. They are also worse when I'm stressed out. At the time my seizures resumed, I was working a very stressful job at a hotel. Once I got on medication--a ridiculously expensive one called Trileptal--I didn't dare skip a dose or I would start to notice it. Now that I'm in a much less stressful job and enjoying life more, I don't seem to need the medicine as much--I'm on a slightly lower dosage now.

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(Red Dwarf, "The Last Day")

I have juvenile myoclonic epilepsy, and I experience seizures daily (the meds, for some reason, don't work for me.) For me, they're triggered by strobe lights or repeating patterns, stress, lack of sleep and PMS. Juvenile myoclonic epilepsy, or JME, generally consists of three different types of seizures: petit mal or absence, myoclonic and grand mal or tonic clonic seizures, though I generally only have the first two. I was diagnosed when I was 12 (I'm 28 now) and it's been fun (read: annoying) ever since.

An absence seizure doesn't really feel like anything. It's a time skip, mostly. One second you're there, and the next second you're not. After the seizure, there is often some confusion and memory loss. In my case, if I have one in the middle of a conversation, I will totally forget everything I was saying. Sometimes it comes back, sometimes it doesn't. And because stress triggers my seizures, it's almost impossible for me to argue with anyone. I can tell when I'm having a lot of seizures, though. I get the feeling of eye fatigue, even if I'm not at all tired. It's kind of a twitchy feeling in and around my eyes.

Myoclonic seizures are quick little jerks - usually in the upper body. Unlike a grand mal seizure, there is no loss of consciousness and they are usually over so quick people may or may not even notice them. For me, they feel like a mild electric shock, without the pain and lasting numbness. I'll feel a pulse shoot down my spine. As soon as it reaches my lower back, it'll "bounce" and shoot back up. When it does, my right arm and/or upper body will jerk forward very quickly. Unfortunately, anything that I might be holding at the time has the potential to go flying out of my hand, get dropped, etc.

I have had two grand mal seizures in my life, both as a negative response to the meds I was taking. If you think they are scary to watch, believe me, they are even scarier to experience. The first one hit me while I was taking a nap. I remember having a bit of a nightmare that scared me awake. As soon as I woke up, I began to hear this loud-pitched, vibrating sound in my ears and when I looked down, I noticed my arms and legs beginning to shake. I slowly began to lose consciousness, which was scary because I had no idea what was happening at the time. I woke up to one killer headache, an electrified feeling in my limbs and I was in one foul mood. The second one, however, was even more terrifying. It happened during an EEG (a test to record brain waves) while they were trying to induce a seizure with a strobe light. It worked a little too well. I remember lying there with my eyes closed, unable to open them or move my body voluntarily. It felt like I wasn't attached to my body anymore, but I was stuck inside of it, if that makes any sense. I remember screaming, even though I wasn't making a sound - mostly because the tech had left the strobe light on the whole time. I could see it flashing, and it certainly wasn't helping the situation. When I came out of it, I had the same electrified feeling in my limbs and I had the tech asking me if I was having chest pain (I wasn't.) Apparently, the seizure had caused my heart rate to shoot up well into dangerous levels...

Having epilepsy, though, is not always about having seizures. I've always said the worst part of epilepsy is not the seizures, but having to deal with other people's considerable crap. I've had people tell me they'll freak out if I have a seizure in their presence, had people insinuate that I'm possessed by demons, had people treat me like I'm carrying the plague, or treat me like I'm two years old. It is absolutely infuriating. It is also something you may need to think about with your character as well. If they choose to hide their epilepsy (many people do, but it's not really a luxury I have,) he or she may not run into this kind of thing. However, if they are open about it, he or she may run into a bit of discrimination, rude comments and the like. Also, if he or she is psychic, people may not want to believe in their experiences, thinking they are just seizures instead.

Hope this helps, and if you need anything else, feel free to send me a PM. :)

My mother is an epileptic who has had petit mal (sp?) seizures and gran mal seizures. Both are physically draining in that afterwards, she gets tired out by all the misfiring in her brain. She describes petit mal as being like flashes of light behind her eyes, confusing her thinking and putting holes in her trains of thought. I've seen her have a gran mal seizure only once and it was scary for a kid to see. It will wipe her out, physically, for the rest of the day -if not longer- and the thrashing about will raise bruises on her body as well as risk self-injury. She never remembers her seizures afterwards but she definitely feels the side-effects.

Another thing to consider is that when you see a doctor aftewards -in most states- it gets reported and your driver's license gets revoked for at least 6 months. This happened to Mom last year and it was VERY difficult for her to live her life in a small, suburban area with very poor bus service. My siblings and I had to give her lifts to places she needed to go since she's very active in church.

I hope this helped.

Yours,
Sylvan (David J Rust)

2003 - about 10,000 words
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This sounds like my little brother's seizures, only he usually holds on to whatever he's holding (often ending with soup or yoghurt all over the place if it's a spoon) - head and upper body jerking forward/down. When he was younger, his legs often gave way too, now he even keeps walking while he has a seizure.
He often bangs his head on things during seizures, too - mostly it's just landing face-first in his plate, but the edge of the table must hurt pretty bad - his forehead is always bruised, and he had to get stitches a few times, too.
Some days, he just gets a coupl, but others, there are several every hour.
He's taking no medication, as nothing really worked for him, or had such strong side-effects that my parents decided against it.

I can't ask him what it feels like, though, as he is also mentally disabled and can't speak very well.
Those who want to make their dreams come true must dream deeper and be wider awake than others.
-Karl Foerster

_ _ _ _ _

Those who want to make their dreams come true must dream deeper and be wider awake than others.
-Karl Foerster

Thanks for posting this topic! As someone with a degree in neurobiology and physiology, I have some insight into why seizures cause the things they do, if that might help.
My FMC's son has Rasmussen's Encephalitis. Researching it helps my (not-so-)inner nerd. :)

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Nano 2004: Untitled (2k) - Lost miserably
Nano 2006: New Westbridge (37,400) - Almost there!
Nano 2007: Winter in Woodbury (50,063) - Won!!
Nano 2008: Layers (50,070) - Won!!

And now for editing....
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It's not directly seizure related, but whenever I had one (in my sleep) I would always swallow my tongue first. As such I would 'wake' choking, try to get up or raise the alarm (as choking is something you are very very conscious of) and then pass out through lack of air which launches into the seizure proper.

My biggest memories of that sort of experience are first of all the choking itself and the fear of that - very reasonably you expect to die as all your senses so slowly cut out and you struggle to raise the alarm but can't speak. Your senses sort of fade, vision first and hearing last. Touch is there when I passed out, but by the time I hit the floor (hard enough for a really bad bruise) I hear the thud rather than feel it.

Pretty much the reverse is true of how the senses come back to me. I hear the seizure, almost conscious of it and what it is, as well as the people around me. Insanely I was there trying to tell people I was okay - relieved actually that the choking as over - but the seizure is still in effect and I couldn't actually form the words properly. Then vision returns after.

In the aftermath of that I frequently had impact bruises wherever I fell and hit myself as well as bruising on the inside of my mouth where someone had to pull my tongue out.

Fortunately I've outgrown them, but even now I am paranoid about my air supply. Any pressure on my throat worries me even if it is in no way threatening, my body still reacts and in reflex tries to remove the problem.

Colbane.

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2007 - Starlight - Completed
2008 - Out Front - Completed
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WOW! The EXACT same thing would occasionally happen to me as a child. It was a crazy experience. I too once asked my mom if things were also running in fast forward for her and she said no and that I was talking slow.

I have had a total of three seizures and since being on meds, I've not had these sensations, but I never thought about the correlation until now. I'm now going to have to mention this to my neurologist the next time I see him.

Those three times I have had seizures, it's been brought on by extreme exhaustion. Two times I was sleeping after having just been disturbed by something (my mom witnessed them), and the third time I was sitting at the computer after having just awoken, and I simply lost consciousness for a few seconds, fell forward onto the keyboard, and lost control of my bladder. I actually woke up quick enough to realize that I was peeing that I tried to run into the bathroom to try to "catch it."

I've also had a history of having migraines, but since I've been on meds they have gone away as well.

I also would twitch quite a bit when I was younger, when falling asleep. I know many "normal" people do this as well, but I would twitch A LOT. Again, after being on meds, I no longer do this.

I don't know much about epilepsy, but a friend of mine had a seizure once. Her mom and sister heard strangled breathing and found her in the basement, shaking uncontrollably, and her face was turning blue. She didn't remember any of it, but now she's terrified of being alone, in case it happens again. She's scared to drive a car or take a shower, things like that.

I have temporal lobe epilepsy, although I'm on medication to control it. I am not affected by flashing lights, but rather by exhaustion, stress, or sickness (and I try to avoid things like flashing lights when tired, just in case). I generally would have absence seizures or complex-partial seizures ( I twitch down my right side, and if I was speaking I repeat the word). I never remember seizures, but I am always exhausted after complex-partial ones. My auras generally tend to feel like a lesser version of absence seizures, like I'm viewing the world through a closed glass door, and everything smells very stuffy.
I agree with everyone who has said that they don't remember their seizures. The most your character could expect to be alerted to the fact they had just had one would be (depending on the type) a feeling of exhaustion, waking up in an unfamiliar place or position, having events appear to jump forward in time, having people look worried or concerned with no apparent reason, or feeling sore.

My aunt also has epilepsy, but a different kind. She has absence seizures several times a day, despite being on medication to control it. Hers are triggered by flashing lights, and she can't drive as a result. Touching her or attempting to bring her out of the seizure only serves to make it worse.

Interesting fact, although I doubt you can use it- in Ancient Greece, epileptics were thought to be closer to the gods. It is very likely that the Oracle of Delphi, aside from having a large amount of hallucinogens, was epileptic. The Romans then decided that epileptics were actually possessed or some other rot. Famous (probable or confirmed) epileptics include: Julius Ceasar, Lenin, Pope Pius IX, Dostoyevsky, and Napoleon

I don't know if that was helpful to you, but I hope it was.

http://paragon-inc.livejournal.com

YAY, something I know about! I've known I'm epiliptic for five years now. I've been on three different medication and five dfferent doses. I currently have three different doctors.
I kind of collapse randomly. In the market, at the mall, in school, with my friends... once I was on the computer one second and on the floor the next.
Ususally everything around me seems to tilt and shake and then go black, I blink-blink-blink, hey, what am I doing on the floor? Oh yeah. That's right.
My head kind of gets this buzzing feeling, like a violent shiver, but only a jolt of it, if that makes sense. No? Eh, I didn't think so.
Music actually makes it better. I always have my Zune on me.

Hope this was helpful!

**EDIT**
I forgot, the medication doesn't do crap for me. Doesn't help at all. I sometimes have five seizures over the course of four hours.
They didn't really give me a tchnical name for my epilipsy. Just that.
They say I have 'petite-mal' seizures, which means I don't shudder and shake. I'm not affected by flashing lights, more like sickness and tired-ness.