Hi, I was just wondering what your thoughts and/or views on epilepsy are. I have epilepsy myself and I have done since I was diagnosed at age 15. I have been mainly seizure free for alomost three years and will be legally allowed to drive next year, which excites me. I have only had two types of seizure: absence (petit mal) and tonic-clonic (grand mal) seizures. However there are about 4-5 other types of seizure out there at least. Petit mal seizures are usually characterized with inattentive staring and I have slipped into a daydream during these, I actually think I have been asleep. It's near enough the same with my grand mal seizures, I think I have just fallen asleep somewhere. However, during the past three years since I was diagnosed, I have found myself having to answer all sorts of questions and putting up with people who don't understand the condition (believe it or not, these were usually teachers) and people who thought of the condition as a joke or a kind of disablity as it were. Whilst it is true that flashing images and/or strobe lighting can trigger a seizure in some people, I am not one of them. I do not have photosensitive epilepsy. It is a very common misconception that this is the only form of epilepsy, it isn't. Most of my friends and teachers have often thought this and as such have asked me to put my head on the desk in my arms and close my eyes if we were watching a clip with flashing images in class, told the teacher I couldn't watch a clip because of my condition, been sent out of classrooms because of flashing images... The weirdness list is extensive. I've also has questions such as: "Can you feel your seizures?", "Can you have a seizure whenever?" and "Does this mean you can't go to gigs anymore?" No, not while I am having one. I also do not get any warning signs, I know other people with epilepsy do, but not me. Basically, it feels like sleeping to me and then I wake up with a killer headache and feel really sick. Yes. I cannot plan nor repress this except with medication. However, I cannot voluntarily trigger a seizure, nor would I ever wish to. Yes, I can still go to gigs. I just have to remember to take my meds before and after the gig. So, if you have any questions which I will answer or any thoughts or views on the condition in general, I would like to hear them. Staff, if this post must be moved, move it.
Well, I learned some things I didn't know from your post. Thanks for sharing c: I can't imagine people would think you're joking. Are there seriously people who don't know epilepsy is a real health issue? That's... troubling. I mean, I figure they would have heard about the banned Pokemon episodes that caused seizures in children, or something like that.
Well, I knew most of, if not all, of the facts you mentioned in your post because my baby brother's had epilepsy for going on five years now. After he has one, he's really off the wall, moody, irritable and tends to drag his right leg around; and while he's having an actual seizure, he shows no signs of having one, and just the thought of that happening to him at any given time is...terrifying, to say the least. And as much as it makes me angry, there really are people who have dismissed it as an issue. His first grade teacher last year was pretty much horrible in all regards, and she -never- alerted my parents about seeing any of the after effects at all. We all just ended up seeing it ourselves at home, despite her knowing full well he has his medication available in the nurse's office. /rant But yeah, I do think that there should be more awareness of how epilepsy actually effects people (i.e. not everyone has a seizure triggered by flashing lights, etc.), and that some people should honestly take it as the serious condition it is.
This makes me think I have the Petit mal seizures... I often kind of daydream and think i'm asleep in class a lot and then I come back to reality super confused. Considering my grandma was epileptic.... Can you please explain more about it so I can maybe go check it out... ._.' I'm actually a bit scared now... I don't know much about epilepsy but how can you find out your symptoms...?
This is true for me as well. In the last school I went to, a girl about two years older than myself had epilepsy. She had to be taken out by an ambulance three times during the year from her seizures. I can't imagine how this could be taken as a joke nor can I imagine that people would be stupid enough to assume that you can't do the same things as everyone else (going to gigs and such). I had only ever heard of photosensitive epilepsy, probably because you always see the warning screens before playing a video game. Now I know that there are other kinds and that there are multiple types of seizures. I hope people can become more understanding of this.
I had a somewhat mild form of epilepsy growing up. I had what is referred to as petit mal seizures which would look like I was daydreaming. Got me into trouble a lot even if the teachers knew beforehand that I had no control over what was going on and that I was having seizures. I never had problems with flashing lights though. I never had a problem in the scant 3 years I went out to concerts or to clubs. Cameras never bugged me aside from the severe dislike I have for having my picture taken. Never had a problem with video games or cartoons. I think it's more of a case of Did Not Do the Research with a lot of people who simple do not know anything about epilepsy and their lack of actually doing anything to fix that ignorance. My family knows about it probably because I had it. And my friends knew because I told them about it. More like: 'Hey, if you're talking and I'm zoned out, it's not because you're boring me. It's probably because I'm having a seizure.' I took medication and had a lot of blood drawn and a few EEGs done. I loved the EEG for some reason.
Talk to your doctor. They can talk to you about itand see if there is a chance of you being epileptic, if so they will help by maybe booking you for some tests such as an EEG, where they measure your brainwaves through little wires placed on your head. It doesn't hurt and there's nothing to be nervous about. Next, they might book you in for a MRI scan, as long as you keep relaxed and close your eyes that isn't so bad either. If you are epileptic, then there's nothing to worry about. It doesn't mean you have to limit what you do at all, you may be placed on medication though and that could last a few years or the rest of your life. I'm on lifelong medication and I'm lucky since I only have to take a really small dose. If you want to PM me to talk, feel free to do so. Also, I'd been experiencing what you are for years before I was diagnosed. It was only when I suffered my first grand mal seizure that I was properly diagnosed. Everyone else thought it may have been a short attention span. The problem with the ignorance regarding epilepsy is that nobody tries to fix it at all, except maybe for the people who have/had the condition. When people ask "Do you suffer from epilepsy?" I usually say no, because I don't suffer from it, it's a condition that I have and I'm okay with it, but then their next question is usually one of the 3 that I touched on before or "What does it look like when you're having a seizure?". My friends sometimes get confused as to if I'm having a seizure, or they sometimes don't believe I'm having one. My best friends, Liz and Quin, are very understanding and will kind of try to bring me out of it by saying my name gently and touching my shoulder so I know what's happened. But like you said, beforehand sometimes I have to explain to them that I'm not just zoning out. I had an EEG and an MRI scan done, I was worried about both of them but they weren't bad at all. I also do have to take medication for the rest of my life, but it's keeping it under control so that's good.
