Epilepsyfag here. tonic-clonic, fullbody, whatever you wanna call it. Anyone else with epilepsy, be it tonic-clonic, one or the other?
tips, experiences, waking up stories, etc?
Levetiracetam, 1000mg x2, + tegretol 100mg x2
ask me anything or share stories, whatever
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I fucked a bitch with epilepsy once. She wanted to induce a seizure and did. It was the most fucked up thing i have ever done. Fucked her missionary and kept looking at her tongue ... It maybe is the reason i started coming on here.
Her face during this shit has scarred me for life
fucking someone coocoo for coco puffs? sounds interesting actually, I'll be sure to try it.
Apart from the meds, how do you deal with it? Socially, school, work? What do you do for a living? What can't you do for a living? Any sports, or high performance activities you would like to do but can't?
I had 2 situations myself.
When I was on keppra I was having seizures every 2 weeks (tc). Now on lamotrigine and have only had 1 in 8 weeks. I was diagnosed last year at 17 and I got my licence taken off me.
Completely irrelevant but just wanted to share as it's been getting to me lately
The people I hang with at school know that I have it, they know first aid proceidures so that's quite alright. Socially, basically the same. At work nobody knows I have it, I'm a firefighter at an airport and I man the firetruck. I'm not allowed to operate anything bigger than a 2-ton car because of it.
as a living I can't operate any heavy machinery or just any construction work for that matter. which consists of basically everything in my skillset.
inb4 sob story but everything's going to hell so I said fuck it, this is what I want to do. nothing bad has happened yet, mostly all seizures happen during my sleep.
doc gave me the go-ahead to practice bjj so I do that, although I'd like to do tae kwon do instead.
up until now, alcohol has been my biggest trigger, had a status epilepticus (permaseizure, brain damage or even death can occur) when travelling some months ago. thankfully, 's paramedics know what to do.
just taken off? no x months of being seizure-free to get it back?
Yeah 12 months seizure free but last one was 2 weeks ago so I'm pretty pissed
Take care user, as I said. I had two episodes myself, but they were long time ago. Currently I take carbamazepine (I'm taconigger, and that's how it is called down here) which is nerfed valproic acid, which is nerfed Lorazepam. I must have good sleep, low to none alcohol intake.
Exactly me, ten years ago. Been on Lamotrigine on and off since then but never worked.
What kind you got? I got temporal lobe epilepsy, like a fucking horrific trip every time.
The neurologist doesn't know. I've had 3 EEGs and nothing. They happen at all times, morning, lunch, night. On the computer, camping, working. So all they're trying to do is stop them. It fucking sucks and I'm thinking about killing myself tbh
Yo I'm exactly the same. Full blown tonic clinic, I've had like 2 dozen seizures im on lamictal 250 grams and zonegran 300 morning and night, this is the highest dose you can take of 5 his mix.
The reason I take this mix is because I'm a puss that can't have needles. I've had my license taken off me once, and delayed 3 times. I'm 21 I was due to get it when I was 16.
Is that mix working for you?
y'all ever tried cbn oil? Just wondering how it works on epilepsy. My dad has early-onset Parkinson's and fortunately lives in Colorado and I've seen it have a pretty remarkable effect.
*cbd oil, sick and hyped up on cough syrup
Ausfag here (eeg guy from above)
Cbd oil seems to be where it's at for epilepsy. Although I haven't tried it, a few people I know with epilepsy have and it's been working for them
Cont.. I was previously on keppra (same as you are now) but my neurologist changed it because it can lead to weight gain and concentration issues. I've had many seizures in front of my friends but thank god I've never pissed myself or shat myself
I don't think so, I think it might be stopping the seizures but I think it's also causing concentration issues (I can't sit still at night yo concentrate on my uni work) and I am only now having issues sleeping.
That's what I used to be like on Epilim (sodium valproate) so I stopped myself on that and I was fine for 18 months then as soon as I went to keppra I had like 14 seizures as many weeks
Same guy
My seizures are usually spaced out every 4-6 months which really fucks it up for getting your license.
Yeah mine are like every 2-3 months now. Annoying af
I would say epilepsy has 9/10 fucked up my life, or at least set me back. Mostly because of where I live. I live semi rural (like 15 minutes drive to the nearest public bus, but it would be like 2-3 hours walk). It's prevented me from seeing old friends so I can't keep contact, I can't get a job and I have to get mum to drive me almost every where. It gets humiliating as fuck. I'm 21 and I'm dependent as fuck, but at the same time I'm independent. I'm literally only dependent bc of the need for a license
Are you me?
Nope. Tell us your story
I have. I'm ausfag eeg Epilim guy
stay in the thread for a while while I research this.
I'm an aussie to. I just read your story.
If epilepsy is causing you depression, talk to your neurologist, it's not worth staying on an AED if it's gonna make you suicidal. I do understand that you probably dnot want to change in case you have a seizure and put your license off for longer, but think long term.
On the plus plus side, my neuro told me the cannabis oil test are underway and finishes this year I think.
so tell me about what happens as if I'm a doctor.
is there anything that leads up to it?
are you unconcious during it suddenly or does it fade?
Do you avoid eating certain things?
Does the doctor tell you to take anything but those pills?
what do you have to avoid?
It's not the meds bro. It's just when I stop and think about my life from this fucking bs I don't want to put up with it anymore. All my friends are leading normal lives and here I am with no car, no licence and in hospital every 2nd weekend.
My biggest bitch with them is just how you feel waking up. I don't know how to deal with feeling like your brain is full of cobwebs. Feels like everytime I have one I lose more and more memories.
Yeah mate, and the sore tongue from biting it as well.
There was this one time when I woke up and was confused af as usual then I vomited for like an hour the paramedics said. Even the anti nausea med or whatever didn't help
I'm this guyWhen I have a seizure, i don't have an 'aura' so I don't know when they are coming on so I can't warn people.
I know. I was just being a hypocrite tbh I feel 100% the same.
I feel like my brain is always on "cobwebs". I used to call my pills my stupid pills because I fucking hate how they make me feel. It makes you feel like you lose 10 IQ points
so hear me out, this is for all of you, and it may sound a bit far fetched, but if you do your research you will come up to the same conclusions:
I used to drink a lot (everyone says that, but it's not a lot until you end up in hospital for _withdrawal_), and eventually I ended up with Wernicke Korsakoff syndrome, pretty badly.
It fucked up my life and they gave me a lot of valium for it because I would convulse.
This was for a short period in my life where I actually listened to people.
Big mistake.
I am very well read, and I know the action of practically all hormones, and I knew before I started drinking that eventually this would happen, because I understand that alcohol is counteracted in the body by use of seratonin, which co-incidentally uses the same material (niacin) to make as does Dopemine.
So when the body runs out of seratonin, it also runs out of dopeamine, which means that the body is going to have tons of seratonin and adrenaline, but no dopeamine, hence the brain damage from adrenal overload, which is called Wernicke Korsakoff.
Now, I quickly dropped the valium when I got my sense back and used Niacinic acid instead, which is a very good and quick acting form of niacin which can be made into ether dopemine or seratonin or even NAD (DNA repair), all of which are under two cycles and are reusable as long as you get enough protein (fish and grass fed milk, because the protein needs to have tryptophan in it for dopeamine to be recreated, and tyrosine for seratonin to be recreated and tryptophan is really only in those two foods in high quantities.
So that worked perfectly, and at 3000mg at first, I got sleep for the first time in weeks and I was fine again, no fucked up nerves.
It took a while, but soon I could play guitar again etc.
I am positive after researching these drugs you mention that this is some sort of scam.
Continued-
Thanks for this thread OP and to all anons who listened and shared. It's getting late and I don't want to go to hospital tomorrow.
EEG fag out
Those drugs aren't even properly understood and the "methods of action" ether doesn't exist or is very badly written and nonsensical.
But however, it appears that they are relying on the idea that your brains are overactive.
valium can be used, most nervous system depressants appear to be able to be used, so I can safely say that you would benefit, if not be cured from this by taking niacinic acid.
I can not imagine, outside of DNA damage, like if you literally can't make enough dopemine, that the body could not just make dopemine and stop you from convulsing.
Perhaps it doesn't think you need that much, perhaps that's the problem.
But it's worth at least trying this, and I can't tell anyone in real life this theory, so I hope you do try it because I'm positive I'm right.
you would want at least 2000mg at first dose, and you will feel a big fizzy itchy feeling after a while, and get thirsty, so drink lots of unhomogenised milk (easier on the liver) and get ready to go to bed.
I'm positive you will wake up fine.
Nice theory, but unless I hear from a medical professional then I will be sticking to my prescribed medication
This
Shouldn't Jasmine be killed for being a filthy heathen?