Is anyone out there epileptic? I’ve never knowingly spoken to anyone else with epilepsy - it doesn’t tend to come up in conversation. Having epileptic fits is a peculiar experience and I’d like to know if my personal reaction and feelings are similar to others. Reply here or PM as you wish.
I’m probably going to get told that this should be in health and fitness. Well, I’m not looking for a health and fitness expert opinion, or someone who makes a habit of browsing that forum, just a normal person who happens to be epileptic. Personally, I’ve never looked in the health and fitness forum before and the stats bear this out with 6 times as many posts here in the open forum than health and fitness - I’m after as wide and audience as possible.
Besides, for some reason, “post new topic” seems to be missing there, unless I’m blind and/or stupid.
Do you have epilepsy??? I don’t, but my dad is an epileptic and it runs in the family so some of his cousins and nephew do have it. You can PM me or ask any questions here, about how it affects family members. For him, he had severe seizures and ended up getting hurt physically, due to falling down but I know of a lot of folks with silent seizures. I guess you are looking for someone who is epileptic…just that growing up with epilepsy feels like one has it!! Kind of like alcoholism.
I’ve had a few knocks in my time (got a bad back right now). I’m not looking for help or advice or anything like that - after 25 years I’m pretty used to it.
It just dawned on me that experiences like the realisation that it’s about to happen and the frustration of wanting to stop it, then of very gradually waking up, walking around with no memory of where it happened and how you got to where you are (on one occasion to the extent of not knowing my own name), slowly sussing out and coming to terms with (accepting) what must have happened and how bad it was, these are things that it might be interesting to talk about with someone who’d experienced them.
I was considering asking my wife to video record me next time, assuming everything else was in order. She’d probably think that was weird but I have no real idea what it looks like from beginning to end, and would be curious to know how much more I remembered, given a prompt.
Fruitloop, don’t record it. It would be of no use, coz it’s not going to be nice. I am sure if you looked, google will come up with many vids of seizures. Asking your wife to film it is also not a great idea, coz it’s not easy for a woman to see her husband suffe a seizure. She may be calm and composed when you wake up, but she does that for you, every seizure you have, psets her. Filming a birthday party is one thing, but a seizure…especially if it is where you fall down etc. is kind of unkind.
Yes, I know what you mean, when you say it’s going to happen, coz it is and you just don’t know when and where. I am surprised, that your medication is not controlling it. They’ve gotten really good. (Ask Jimi, he’s living off his cat’s). Most epileptics have a tendency to stop medications, hope you are taking the Doc’s orders.
It was 15 months until this week - so that’s pretty well controlled.
When I say it’s going to happen, I mean immediately beforehand, trying to ignore it or convince myself that I can relax, meditate, control my body. There are ways to control it - I don’t think it’s ever happened when I’m lying down, not trying to do anything. If I’m trying to fiddle with something geometrical, open a packet, teabag etc, it could aggravate it - the sense that there may be some ways of controlling it mentally is frustrating when it doesn’t work.
You can’t control it. Sad but true. And 15 months is a good time frame. I know, one gets used to not having seizures, and ‘the one’ when it comes is annoying. Don’t dwell on it.
I had three hectic seizure in a quick succession about three years ago. First one happened at work, where I went as stiff a corpse, my back arched to the point of snapping and I hit the TOP of my head on the floor. When I came to I was in the ambulance and very woozy.
I got to the hospital and felt better, but then had seizure 2 and 3, even felt them coming on and happening (stayed conscious and lucid through them).
Doc did a lumbar puncture and said I prolly had encephalitis, hospitalised me for two weeks, with an MRI half way through (showing no brain swelling) and a courtesy lumbar puncture before leaving, showing the protein count in my spinal fluid was much lower than on arrival.
Since then I haven’t had another seizure like those ones, but I have had days/moments where things feel weird and wobbly (inside my brain particularly). I took Carbamazepine for a year after the incident, and even have some here in my medical chest.
I’m not sure if I’m epileptic or not. I’m not even sure I had encephalitis. But I had some bad ass seizures that day (this happened in China, so who knows what the real cause was…)
You should check for epilepsy especially the petit mal type, if you fell like this [quote] I have had days/moments where things feel weird and wobbly (inside my brain particularly)[/quote]
Would clawing of the hand count as a symptom? I was just reading up on Wiki, didn’t see anything about that. But I do get the hyperventilating thang going down on those days…
My dog has epilepsy. I think. He had 3 fits in one month(on a Sunday every time) then nothing for 3 months…then another 2 a week apart. Then some more, but it has been months since the last one. So I’m not sure if it’s epilepsy or a reaction to something in the environment.
I recorded the first 5…freakin horrible. Until I read that he isn’t aware at all. SO I chilled and just dealt with the pee, poop and vomit. Through that I met many people on Youtube who has it, or who has kids who has it.
one wierd thing…I smell coins just before , or after he has it. And then my friend had fits back home and she said she tasted coins in her mouth and that made her throw up, and while she threw up it hit (same with my dog)
do you taste that? That smell is in the air for about an hour after the fit…drives my dogs wild.
Looking on youtube, there are several videos on there with people saying they’d asked their partner or house mate to film them if they got the chance, and saying that it was their first chance to know what was really going on. I think it’s a quite understandable wish and some of their testimony was quite moving.
I get why you want to see it, but having seen it ALL, I wouldn’t recommend it. And you should really find out if your wife is OK with it. If she is, then fine. But NOT everything needs to be recorded. Then again, just my 2 paisas.
I put a TuDou seizure video on youtube. Every seizure is a little different…it’s pretty informative to people that want to use it or study seizures. There is this one lady who has a sun that has severe seizures and he is autistic too…and every time he has a bad fit she just so happens to be in a bra only. Now that’s weird…but it is nice to follow people and see how they are doing…and you don’t feel so alone…and you get to see people that need to deal with this on a daily basis and you feel better about dealing with it once in a while
"one wierd thing…I smell coins just before , or after he has it. And then my friend had fits back home and she said she tasted coins in her mouth and that made her throw up, and while she threw up it hit (same with my dog)
do you taste that? That smell is in the air for about an hour after the fit…drives my dogs wild."
Don’t get me wrong. but when I have my weird, wobbly days I have a strong metallic taste in my mouth, almost bitter and sour. But definitely metallic.
are you on medication? the best thing is to get your med level stable. if you are and you started having a seizure after 15 months. something is up.
most epilepsy comes on during teenage years. stress on the body from growing.
you are 25. if you take your meds as perscribed and don’t do anything significant then it is time to go down the list and troubleshoot.
biggest triggers of seizures are:
drinking/drugs
stress(physical and emotional)
allergies
eating habits
changes in weight(up and down)
sleeping pattern
light fixation(computer/flashing lights)
medication problems
if you can’t find any particular event that triggered your seizure, then you should see a doctor(specialist) and he can help you to stablilize your level. when you are an adult, your body still changes and it could be that your organs are absorbing the meds at a diff level than a few years back. everybody is diff. sometimes you have to tweek your prescription every few years. Tegretol(cr) has had pretty good results over the years in testing. good luck!
Well, thanks for the advice/concern, but everything’s fine, if not entirely normal in that 15 months is the longest I’ve gone without a fit in eight years. The trigger is quite understandable too - tired and drunk the night before, although I’ve been very drunk plenty of times in the last 15 months. And the drugs are fine.
I’m just interested in talking to anyone who’s experienced it.
So, I’ve been ghettoised to health and fitness. The more specialised the forums are, the less likely people are to come across interesting things.
My objective was to get as wide an audience as possible and speaking personally as someone with epilepsy, I have no reason to be browsing the health and fitness forum.
Could be the booze triggering the seizures - if I get too tanked the next couple of days I’m a bit twitchy. Going to do my annual sobriety session soon - will do a month to three clean.
I’ve always noticed I’m much sharper off the juice…
