I can't dance. I'm six feet tall, lanky, and Scandinavian. Rhythm is just not going to happen for me. I seldom dance in public, because on occasion, someone will ask me teasingly, "Are you epileptic or something?" So I tell them that, yes, as a matter of fact, I am epileptic, and as such I know for a fact that what I was doing on the dance floor just now is nothing like an epileptic seizure. This response does one of two things. The person will either slink away and (I hope) think twice about using a disorder like epilepsy as an insult again, or they will barrage me with questions.
This blog is an attempt to answer some of those questions.
Epilepsy is a somewhat mysterious ailment, so I understand that people want a first hand account. Epileptic ambassador is not the most comfortable role for me, but I hate misinformation enough that I will answer any and all questions that come my way. So, let's begin with the first often asked question:
1.) Are you epileptic or something?
Yes. Yes I am. I was diagnosed at the age of six, after I had a seizure while helping my mom decorate cookies for a Christmas party at school. We had stayed up late making the cookies and we got up early to finish decorating. I had not gotten enough sleep, which I later found out is a major trigger of seizures. I spent the rest of the day at doctor's offices.
A week later, I got my first EEG (electro-encephalogram). I've had tons of these over the course of my life...I don't much bother with them anymore. All they ever tell me is that, yep, I'm still epileptic. And they are awful. I have to stay awake the night before the test. This is because of the sleep deprivation trigger, and also to increase the liklihood that I will fall asleep during the test. That's apparently important. Little electrodes are attached to the head using a water soluble glue, but to ensure a good connection, they first sand the scalp. Yes, they sand my head. For a week afterward, I am picking grit and glue out of my hair. That's another reason I don't get EEG's anymore. They're a pain.
2.) What does a seizure feel like?
I think everyone has a different answer to this. A lot of it depends on what kind of seizure you have. There are almost forty different types of seizure. Some people have tiny little lapses in consciousness that last only a second or two; they don't fall or twitch or anything. They might appear to be daydreaming, but you can't shake them out of it. They come around when the seizure ends. This is called an absence seizure.
Some people have very brief, jerking seizures, called myoclonic seizures, which are like the jerking limbs one sometimes experiences when falling asleep. Unfortunately, people with this type of epilepsy are awake for these unexpected jerks. They happen without warning, and can be violent enough to cause a fall. Think about that for a minute...how frustrating would that be? For carrying beverages, a laptop...a baby?
Then there are the seizures that look more like my dancing. The tonic-clonic seizure is what I have. I'll describe how it feels to me, and I'll report what others tell me they look like.
People tell me that at first, my body goes completely tense. Every muscle contracts, and I kind of curl backward. I imagine it looks like an electrocution in a movie; however, never having seen a real electrocution or one of my seizures, I can't say for sure. This part lasts for a couple of seconds, then the twitching and jerking starts. The muscles relax, but because they were SO tightly contracted, they go pretty crazy when they are released. Sometimes upon waking, I have the unhappy discovery that my bladder released during the muscle spasming. I've tried to convince my friends who have witnessed a seizure to imitate it for me (minus the peeing my pants part), but they always refuse, thinking it will hurt my feelings or something. I wish I had been able to muster a seizure in the halls of my high school; then someone would have imitated it for sure! High school kids can be jerks!
My experience of the seizure is much different. First, I get an aura, which is a warning of sorts. My arms start to tingle and I get really cold, but sweat profusely. My lips go numb and my face gets white as a sheet. This lasts for a good five minutes, so I have plenty of time to find a safe place to lie down. Not everyone is lucky enough to have an aura. Those poor souls are caught by surprise and have more falls and head injuries.
When the seizure starts, my vision fades to black from the outside in, like old black-and-white movie transitions. Then it gets loud and white. It sounds like the loudest white noise ever. I'm not dreaming, exactly. In fact, I can seldom make out images. There's a sense that my brain is busy, but nothing is discernable. It's just loud and bright, which makes sense, as my brain is basically being electrocuted. A seizure is a disruption of electrical signals in the brain. It's pretty much an overloaded circuit. The noise goes on for a minute to two minutes and I wake up. And that brings me to the next question.
3.) What causes it?
In my case, it's genetic. My grandmother had it much worse than I do. She had seizures several times a day. Her epilepsy beat every new medication that came out. Mine was nicely controlled by Depakote when I was young. They started me on phenobarbital, but apparently, barbiturates and first-graders don't mix. By the end of the first week on the phenobarb, my teacher was in tears on the phone with my mom, "You've got to take her off it! Please! She won't stop moving and she thinks everything is hilarious! For the love of God, find her something else!"
As an adult, I don't take anything. Over the course of twenty-five years, I have learned to recognize and eliminate my triggers. Stress and sleep deprivation are my main triggers. I can also trigger one with a strobe light or tiny, repetitive patterns. So night clubs can be problematic, as are the bathrooms of said nightclubs, if they have one of those beehive-patterned tile floors. I also suspect that amusement park rides and blood donation are triggers. I don't know for sure if they cause seizures, or if I get so stressed out about the wooziness that I push myself into one, but rather than find out, I just avoid them both entirely. But like I said, my case is not that serious. Many people cannot control their epilepsy with clean living and a good night's sleep. Those measures don't work for me, either, during times when stress is out of my hands. My last seizures were at times of extreme stress-- my brother's funeral, in the eating disorders unit, and after a fever of 103 degrees.
4.) Does it hurt?
No. It makes me very tired, though. I will sleep all day after a seizure if time allows. If I'm out of shape when a seizure hits, I'll have sore muscles the next day. I suppose it would hurt if I ever hit my head or something. Otherwise, it looks a lot worse than it is.
5.) Are you, like, retarded or something?
What DOES hurt is the stigma attached to the disorder. I grew up with people making fun of epileptics all the time. They'd do a Frankenstein walk or fall on the ground and shake and say, "Look! I'm an epileptic!" Then there's the critique of my dancing. But the one that really hurts is the assumption that a person with epilepsy has diminished mental capacity. It just isn't so.
Epilepsy often occurs comorbidly with other conditions, so there are some profoundly disabled people who have seizures, but they do not account for the majority of us. Most people who have epilepsy are perfectly normal in every other way. In fact, some of us are better than normal. Epileptics throughout history have been hailed as shamans or prophets. It has been called "the sacred disease." On the other hand, epileptics have also been stoned for demon possession.
So I'm either an inspired visionary, or I'm demon possessed. Either way, you'd be wise not to make fun of my dancing!
If you ever encounter a person having a seizure:
Do...
- Protect the person from injury - (remove harmful objects from nearby)
- Cushion their head
- Look for an epilepsy identity card or identity jewellery
- Aid breathing by gently placing them in the recovery position once the seizure has finished (see diagram below)
- Be calmly reassuring
- Stay with the person until recovery is complete
Don't...
- Restrain the person
- Put anything in the person’s mouth (It is a MYTH that an epileptic can swallow his/her tongue during a seizure).
- Try to move the person unless they are in danger
- Give the person anything to eat or drink until they are fully recovered
- Attempt to bring them round
Call for an ambulance if...
- You know it is the person’s first seizure
- The seizure continues for more than five minutes
- One tonic-clonic seizure follows another without the person regaining consciousness between seizures
- The person is injured during the seizure
- You believe the person needs urgent medical attention
(Do's and Don'ts courtesy of Epilepsy Action of the UK).
For more information on epilepsy, go here:
http://www.epilepsynse.org.uk/PAGES/info/leaflets/firstaid.cfm
-or here-
http://www.epilepsy.org.uk/info/firstaid.html
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I know I learned about seizure disorders... mostly just medications for treatment and the what to and not to do that you mentioned at the end.
I know depakote is a seizure medication, but I'm more familiar with it's use in treating bipolar disorder in children (and adults, but it works better than other medications for children), because pediatric behavioral health is an area of nursing I love.
Seizures weren't really covered in depth in my nursing school. This blog was pretty informative, especially being a first-hand account.
I can't imagine living with epilepsy, but I'm glad that you do get auras. I do know that many injuries resulting from seizures happen because of how suddenly they come on, and it's good that you can avoid that.
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That is really interesting. O: I've always wondered what a seizure feels like.
...and damn. Six feet tall? omg. You're over a foot taller than me. Wow. O:
You're changing the world, one blog at a time. I watched a movie about an epileptic boy once and his type of disorder was controlled through his diet. Have you heard anything about the relationship between diet and epilepsy? I had no idea of how bad things can really be for epileptics though. I'll teach my children not to be jerks in school.
www.progressiveu.org/blog/americangirlinchina
Was that Lorenzo's Oil? I saw that one. I don't know much about diet and epilepsy, but I do think that what we put into our bodies definitely affects us, so it makes sense. From what I remember about the epilepsy diet, it's supposed to be very high in fats, but a certain kind...maybe one of the omegas? They're supposed to be good for the brain. I'll look this up. I had forgotten about that.
http://www.progressiveu.org/blog/ediblewoman
Yah, it was Lorenzo's Oil. Apparently it was the only thing that worked for the little boy.
www.progressiveu.org/blog/americangirlinchina
I better watch what I say around you edible woman. You're likely to turn it into a blog entry! Though I'd never say something mean like "are you an epileptic or something". That's just crude.
Great info. I feel I've learned something today. The diagrams at the bottom reminded me of health class. We had to physically put someone in these positions, though in that case it was for people who have gone unconcious...possibly from drinking too much alcohol.
Thanks for the info and the insight!
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Gross, but true, it's so a drunk doesn't choke on their own vomit.
I realized when posting this that I sleep in the recovery position. In fact, I can't fall asleep in any other position. I wonder if it's because I associate that position with the most solid, dead to the world sleep of my life, which is what happens after a seizure?
Oh, and since I get the auras, I always lie down in the recovery position before the seizure. Saves a step or two, I guess!
http://www.progressiveu.org/blog/ediblewoman
"Oh, and since I get the auras, I always lie down in the recovery position before the seizure. Saves a step or two, I guess! "
Sure does! Plus you don't have to worry about a head injury!
Hmm. Funny that you sleep like that. Unconcious need to be in said position, perhaps? Oh I don't know. I'm just a weirdo who likes to comment and reply.
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This was really informative. There was a period in time when my grandmother's doctor's thought she might be epileptic. Turns out she wasn't, but that sparked my curiosity some. I never really got around to completely figuring out what it was. Thank you for informing us all on this disorder.
And I am truly sorry that you've encountered people who make hurtful comments about epilepsy and the mental capabilities that some people face. Making jokes and statements about people with any kind of disorder is just completely crude, ignorant, and unacceptable (though they do anyway).
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'But I don't want to go among mad people,' Alice remarked. 'Oh, you can't help that,' said the Cat: 'We're all mad here. I'm mad. You're mad.'
Lewis Carroll, Alice in Wonderland
"I can't dance. I'm six feet tall, lanky, and Scandinavian. Rhythm is just not going to happen for me. "
I have opposite problem. As a 6' 3" pale lanky Scotsman, people tend to envy/hate me for the jaw-droppin' funky business I do out on a dance floor. ;)
You crack me up, rubber-band man!
http://www.progressiveu.org/blog/ediblewoman
One thing worth adding, I think, is how debilitating epilepsy can be for simply the THREAT of a seizure. Think of all the activities a person must forego if their epilepsy is not reliably under control, perhaps most notably driving a car. Even just occasional seizures force people to make accomodating life-style choices 24/7.
I'll never forget one of the only patient's of my dad's who I ever had any contact with. He suffered from acute and regular seizures, forcing him to wear a helmet full-time and unable to drive or operate any kind of dangerous machine. It was so bad that it was causing him all kinds of lasting physical and mental disfunction. After surgery he was dramatically improved to the point where he could live a fairly normal life (except for the driving part). I have never seen a person so grateful. He loved my dad like he'd been saved from a burning building. It was a wonderful thing to see. Unfortunately, deeply invasive brain surgery is seldom without side-effects, and not everyone can be helped this way, but it feels good to know of at least one epileptic who got some relief.
It has to be super serious for them to consider performing the surgery, too. For those people who have really bad, frequent seizures but AREN'T candidates for surgery, there's a sort of brain pacemaker, called a vagous nerve stimulator, or something like that. I'm sure you know about that (in fact, I think I first heard about it from your dad), but I wanted to put it out there for other people to look up.
http://www.progressiveu.org/blog/ediblewoman
I thought that putting something in their mouths was to protect from biting the tongue, not necessarily from swallowing it? Is that also a fals assumption?
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People sometimes stop breathing during a seizure, or have a very hard time breathing, as the muscles around the lungs are so tightly contracted, so putting anything in the mouth increases the risk of death by suffocation. I'd rather bite my tongue than die.
http://www.progressiveu.org/blog/ediblewoman
the doctors found that, indeed, her lungs did collapse. She died three years ago at 25 and I wonder often if she knew she was dying or if the seizure was so bad that she pased on without that realization. It still haunts me and so I thank you for writing about this disorder. From what you wrote it seems that maybe, hopefully, the brain storm kept her from the mental anguish of suffocation. The autopsy revealed that her med levels were 'critically low'. I am glad for you that you can manage yours with healthy living. Keep up the writing...you always help to clarify ideas that oftentimes are jumbled and weighty...
That makes sense, and I agree. Tongue biting definitely outweighs death.
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"Most intellects do not believe in God, but they fear us just the same." - Erykah Badu
I have really learned a lot about the topic of seizures. I also thought they put something in the persons mouth to keep them from biting it, but it makes sense if they bite there tongue they may also swallow it...
but interesting!
I'm glad you learned something from my post, but I want to be sure that it it clear that people USED to put things in a person's mouth during a seizure, but that is now recognized as ABSOLUTELY THE WRONG THING TO DO. Whatever the reason they used to do it--biting or swallowing--doesn't really matter. The reason you shouldn't do it is that it can lead to death by suffocation.
http://www.progressiveu.org/blog/ediblewoman
Thanks Ediblewoman! There are several women who suffer from seizures at the homeless shelter I work at, so I've had to help them onto the floor a few times to keep them safe...this was very scary for me, and I wondered what they might be experiencing. I thought about asking questions afterward, but as you described, the ladies I worked with just really wanted to sleep the rest of the day and didn't feel like talking, and I didn't bring it up again. Now I have a little insight into what they might have been experiencing...so thank you!
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The idea of being homeless and epileptic is terrifying. How do they keep themselves safe? If they have a seizure out in the open, anyone could steal from them or worse. And sleeping afterward is just as dangerous. And I'm guessing they aren't regularly medicated. Wow. I'm glad your facility is there for them. Are they allowed to stay all day and sleep after a seizure? A lot of homeless shelters won't let people stay during the day.
http://www.progressiveu.org/blog/ediblewoman
Again I must sent you a deep heartfelt thank you for not only teaching me something new, but also teaching me something that can help someone if they have a seizure. Your blogs are always amazing edible, and yet again I gave this one a five.
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"One of the things that draws writers to writing, is that they can get things right that they got wrong in real life, by writing about them"
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Having seizures reugularly would scare the hell out of me. I have a neurological seizure once as a side effect from a med I was on. I lost an entire day. I don't remember anything I said or did and I guess I was acting completely insane.
Oh my gosh, I've learned about epilepsy from my Medical classes, but I've never heard (or read) about someone's own experiences with it. I can't even imagine the things that you had to go trough as a child or teen. And you're right, high school kids can be really cruel. You seem like a strong and an amazing person to share your experiences with everyone. You'll be helping a lot of people. =]
I admire your courage in revealing this very personal piece of your life with all of us. I have also read about epilepsy, but this is the first personal account I've seen. I also enjoyed your bit about the dancing thing. I have similar experiences(though mine aren't as fun) with my dyslexia...and sometimes my OCD.
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...but I do have a seizure disorder. When I was 18 I had a stroke, then a seizure, and flatlined. Ever since then, I've had a seizure disorder. I tried Depakote, Nuerotin, Dilantin, and a few others, but they all made me feel weird, just very much not like me. I finally got my doc to try me on something else with less side effects- phenobarb.
I've been on it for about 10 years now, and have had two seizures since. My triggers are the same- lack of sleep, stress, strobe lights, and my doc told me to stay off rollercoasters and I'd rather not test that. I've found that being in a hot tub for an extended period of time (possibly dehydration?) is a trigger, as well as not eating. I've cut my dose in half over the past few years, and rarely (once a year) even have a petit mal (absence) seizure.
I get an aura, often it's a strong sense of deja vu, or I just feel like I'm watching myself and everything around me. Sometimes I shake or get really nauseas. When I do, I tend to freak out, so I've learned that counting backwards and yoga breathing knocks me out of it.
I don't remember ever having a seizure. I remember a few minutes before and usually don't wake up until I'm at the ER, or in one case, on the side of the road. (I was on Dilantin at the time) I usually bite my tongue, but baby oragel works wonders for the pain. I also get severe headaches where I had my brain clot.
According to my neurologist, every time you have a seizure, there is a CHANCE you could get some slight brain damage. Just passing it along...
-Sonja
"Democracy works only when you vote. When you don't take the time to vote for the candidate you find the least offensive, you run the risk of electing the candidate you find the most offensive."
My grandmother became veryu cognitively delayed as a result of her seizures (and I think a little bit of the meds, too). But she had seizures repeatedly over 70-some years. Her cognitive delays didn't show up until her mid-fifties. It took a lot to damage her brain to the point it was noticeable. I just want to add that in so people don't go around thinking all people with seizure disorders are "brain damaged" or "mental" or something. But you're right...it fries teh brain for a couple of minutes, so there probably is some damage from time to time.
http://www.progressiveu.org/blog/ediblewoman
There are a lot of misconceptions about a lot of things! I just wanted to make it clear that there is likelihood. Not to mention, if people have friends or family with seizures, and they don't seem the same for a while after one, that could explain it. I know it takes me about a week to recover, before I feel like myself. Your whole body and mind go through hell for however long your seizure lasts. I get so exhausted, I feel like I've run a marathon and taken a dozen tests in 10 minutes- from eye exams to IQ tests.
I thought of another factor for me. I haven't had a seizure since I've gotten my kidney. I've had at least three while on dialysis- hemodialysis. It's about homeostasis, and when you're on dialysis, the machine is doing the work in 4 hours what kidneys do constantly for 24-36 hours. That was the scariest thing ever because if the needle gets pulled out during a seizure I could have bled to death.
-Sonja
"Democracy works only when you vote. When you don't take the time to vote for the candidate you find the least offensive, you run the risk of electing the candidate you find the most offensive."