hi everybody, i just joined. had epilepsy my whole life, diagnosed finally in kindergarten. i take epival among other things. when i forget to take my pills 2 or 3 days in a row something strange happens. of course i get dizzy/headachey/light headed/see colors but the wierdest thing is when i move my eyes i can hear them move. its crazy and it might sound stupid, but it happens. i was just wondering if this happened to anyone else out there. its the wierdest sensation. i mean, its actually kinda cool but i don't do it for fun. either way, thankxs for reading? have a good day 8)
welcome atomic honkey
i have no idea what the right answer is to your question, my eldest had grande mal when she was small but grew out of it by the time she reached teen years and puberty.
she had a pill box to put all her meds in so she could see at a glance if she was up to date with them, it has seven sections each one split into four for the meds to go in for am lunch pm bed.
mayb u could get one of these to help take your meds daily mean while i will see what i can find out about the sound of eyes moving
keep posting and chattin
glad u are here
loving thoughts and positive vibes
thankx for the reply! i had a dosette a long time ago, i’m usually pretty good about taking my pills but there are the odd lapses where i dork out and totally forget. my epilepsy took a long time to diagnose because eeg’s found nothing. it took a cat scan to figure it out. i know its temporal lobe and i’m really light sensitive. the sound is that of a very soft static. its very fascinating but probly not healthy! either way, i appreciate your reply. thank you,
atomic honkey 8)
atomic honkey
hon u will either be my salvation or ruin.
i think the fits/meds help u to zone out and miss things/hours/minutes, our girl was definately a dolly day dream when small.
it seemed as if she had a heightened awareness of her own being whilst she had the brain disorder so that might acount for the sounds u hear.
but i will keep researching
keep posting
and chattin
as always loving thoughts and positive vibes
today is one of those days! i've forgotten enough days in a row that it's happening again. and funny enough, i was wiping off the stove and i got a big shock and it felt kinda similar in that i felt it all through my limbs and they felt tingly or like...charged i guess afterwards. of course the shock was many times as intense but it all feels so electric. i really have to go take my pills before i forget again!
thanks for the vibes, they rock. and if any info comes up i can't wait to read it! its really fascinating for me. so thanks again, and take care 8)
Hey Sweetie,
I have grand mal epilepsy, diagnosed since the age of 15 and I'm 27 now. No, I never get the scratchy eyes. I used to get petite mal seizures - ya know the ones where you look you're fine, you don't even notice it's a seizure...it's like your mind blocks out everything...people would be calling me and calling me and I would hear them...but it's like my brain wouldn't respond...it useda bug the hell out of my family...but I couldn't help it. Would that ever happen to you?
Have you ever confused a panic attack with a seizure? I also suffered from panic attacks and I've wondered has anyone else had that issue where they've wondered is this a panic attack or a mini seizure, as your brain seems to be going a little nuts and it's like your having an outer body experience.
Before a grand mal seizure, I will get this overwhelming sense of calm, and i never remember anything after that only waking up.
On one occasion when I was "lax" about taking them, I had a seizure outside my college, broke my tooth and had to have stitches in my lip...so you are putting yourself in very real danger...look after yourself.
But sweetie you should really take your pills, when I first got diagnosed I was really flimsey about taking them...because I wasn't used to them. Although getting older I obviously got better. I've only recently started driving, and the trouble you have to go to to get insured...as it should be really...is avoidable if you maintain yourself and your illness. You have to be 2 years seizure FREE here. And have a doctors cert to insure this.
I understand it can be annoying, I was so peeved at having to take all these pills everyday...but just make it part of your routine...if you have trouble remembering, put a post it somewhere that will remind you for a while...then you will just get used to it, like brushing your teeth:)
Thanks for sharing, I have no epileptec friends...so I can't really say..does this ever happen to you?...it's nice being able to ask these questions.
Look after yourself, sending you wonderful thoughts.
Moongal x
hi guys, thanks for the comments and what now 8) i took my pills this morning. i know the danger of not taking pills, it is annoying but i accept it. i fall out of patterns and usually something bad happens for it. i've had petit mal, grand mal and the kind in between that. tough to diagnose those petit mal ones, hey? i think that's what took them so long. and yes, i have had a panic attak or two. actually one the other night because i did something i shouldn't have. i don't know how long it lasted but it seemed neverending. i think its because i hadn't taken my pills in well over a week. been a long time since i had a seizure. i've always been anxious and nervous, but for me a full blown panic attakc is less 'electric' than a seizure. panic attacks for me are anything from your standard rib crushing heart attak feeling to a very odd 'oh my god i'm melting there goes another layer i'm going to swallow my brain. this all might sound crazy but it is my truth. i'll be more diligent about taking my pills, i can't keep slipping like this. its ridiculous, really. i'm 30 and i know better. silly me!! 8)
sorry its so long, and thanks for reading ifn you had the patience. good day to you all n take care,
atomic honkey
Hey,
I was just reading up on one of your earlier posts did you say you were "light sensitive" so would have photosensitive epilpsey? Or did I pick that up wrong?
They are easy to forget, I was dreadful in the begining, it's only really in the last 5 years, when the seizures started getting worse (I'd get a grand mal seizure after missing a dose) that I realised - ok better start taking this abit more serious.
I don't know at our age will we ever grow out of it, I wish we could, but as far as illnesses go the version I have is well controlled now...so I'm pretty happy with it.
Hope you having a great day and take care of yourself.
Moongal x
Hi atomic honkey, Do you have one of those pill boxes for each day of the week? Also maybe enlist the aid of a family member or friend who will help remind you to take your medicine. I have a friend who I do that with. Put your medicine somewhere that you know you will see it and remember to take it.
hi guys, thanks for the comments, they are all appreciated. as for the light sensitive thing, i could have said it wrong, totally. all i know is as soon as i started school i would come home with splitting headaches from the fluorescent lighting. video games also threw me into a grand mal, i can't remember if its light or photo sensitive, but it really seems to revolve around me eyes and light patterns. and of copurse lack of sleep doesn't help one bit. speaking of that, its way past my bedtime!! i need more discipline. i can't keep this up! too many late nights will catch up eventually. i reallu should be going but i gotta let everyone know i appreciate all the input. thanks a million, and also take care everybody!
atomic honkey 8)
Hi atomic honkey, If you are continuing to have these problems and are on medication for it then I suggest going back to see your doctor. I know what you mean about losing sleep. I can't do too much of that either. It catches up with me quicker these days. Keep sharing and letting us know how you are doing.
ugh, its like i'm in some kinda dumb rut. i remember 1 day and forget for like another week. i'm starting to think there's something else bugging me because this is ridiculous!! i think i'll call the doctor tomorrow. take care, everybody! 8)
Hey Atomic,
When I use not take my pills in the begining it was for three reasons...1. sometimes I would genuinely forget...2.I did not want to genuinely believe I was ill...it really frustrated me to think that I had to take these...so I thought maybe I won't take them, see what happens.
But of course that induced seizures. And 3...I went through a stage of real self hatred where I didn't care if I had a seizure or not so i didn't really care to take them...I think the seizures were a cry for help.
Could any of these reasons be you? I hope you get help from your doctor. Best of luck with it and take care of yourself.
Much Love
Moongal x
hey atomic if its your eyes mayb u should get some glasses to see if that helps the situation.
as always
loving thoughts and positive vibes
hmm, i've actually never thought to get my eyes checked. i'd like to know what's going on back there! and as for self hatred, i'm in and out of that more than i'd like. y'know, like who cares, right? truth is a lot of people care and i know that, sometimes i'm too stubborn to admit it. but like always, thanks for the replies, i swear i'll go to the dr soon. i need a refill on my meds 8)
take care everybody
atomic honkey
Hey Atomic,
We care if you are putting your risk at health because of it. it is truly an awful feeling and maybe you came here for some support in that regard too.
How are you getting on with the pill taking now? How are you feeling? Please keep coming back for support.
Much love to you
Moongal x
oh its really ok, i know i have a ton of people who care. the pills, well i'm on and off like always. recently i had the carpet ripped out from under me so to speak and me&my family have to take a dumb trip. its a super long story but in short i have a splitting headache. here's hoping coffee fixes it! sorry i'm not chipper today. i appreciate all the support and what not. take care everybody 8)
atomic honkey
Ok, take care of yourself. And keep coming back here for support or just to check in...we're all here for you.
i hope your headache passes soon and you have a good day.
Much love to you
Moongal x
Hi Atomic,
I've had epilepsy since I'm 7 and never outgrew it. I'm now 57 and have partial complex seizures followed by secondary generalization, meaning that the seizure starts in one side of my brain (left temporal lobe) and then spreads to the full brain (grand mal seizure). I take a ton of medication both morning and night. My seizures are nocturnal only, unless I'm adjusting to a new med. I also am light sensitive, but by that I mean, the light from that comes from am EEG or a concert will throw me into a seizure. Computers don't bother me, nor do video games, BUT sometimes watching a concert on television will. I suffer horrific migraines after a seizure and there is not one migraine medication on the market strong enough to help. I wake up at 4 a.m. feeling like I've been slammed in the head with a hammer and the migraine will last 7-9 days. I have to take two Darvocet and lie down and if I'm lucky, the pain will ease and I can work that day. I have also had out of body experiences and my dr. explained that many epileptics have them. I realize now that I was having them when I was under a lot of stress.
Please get a pillbox and take your meds as prescribed. Stress is a big factor in keeping your seizures under control. And I'm proof that not everyone outgrows them, and they get worse as you get older. I'm not trying to scare you. Or maybe I am...scare you into taking care of yourself. Keep taking those meds and try and stay as stress free as possible (there was always stress in my life, even as a child).
Good luck to you!!
bbfan