Fellow Aspies who have Epilepsy...post here!

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Hi y'all!

I've noticed there are many of us on here who may be epileptics, so I thought I'd try and create a thread for us to communicate with one another, look for advice, ETC.

Good idea.

I always wonder what types of epilepsy people have and how they treat it.

I get petit mal seizures on a fairly regular basis and I also get grand mal seizures. The grand mal seizures are fairly controlled by tegretol. I still get them once or twice a year when I over do things. Staying up late, over worked or stressed.

I think the thing that frustrates me the most is the fact that I can't drive due to my epilepsy.

Yeah interesting. I have always wondered whether I have them. Some very small one second things that I pass out from my mind and return soon after
Or that I might accidentally bite me on my tongue.

Though I never had any bigger event like really bad uncontrolled actions, neither did I ever fall down

These things never happened with flashlight or anything like this just I don't remember when, there doesn't seem to be any particular cause....?

I don't have epilepsy.

But I read some stuff on autistics with epilepsy.
In the beginnings of autism research it was sayd that 30% of autistics have epilepsy, now just 6%.
It's not really clear why, maybe because now are also "mild cases" of autism are getting diagnosted.

i have epilepsy...grand mal seizure not for a few years but partial complex seizures often. i take toperamate and keppra

I think that could be some of it but I also think they were misdiagnosing some with epilepsy. I've heard of cases of more sever autistics being misdiagnosed with with it; some of it was related to side-effects of medication they were on or rocking/shaking/sitmming or other autistic related things.

btw I don't have epilepsy either but I'm on an epileptic medication for OCD Neurontin (Gabapentin)

I have seizures, not very frequently, and the types of seizures that I have vary.

Any time I have one at my house, my mom always freaks out and threatens to call an ambulance for me, when it is clear to her that an ambulance isn't necessary. Just recently, when I visited the office of my neurologist taking a journal of times that I had seizures. While waiting in the waiting room, I read it throughly and saw that she either lied or exaggerated about seizures that I have.

Does anyone know a way to make my mom understand
what epilepsy truly is without sounding like I'm trying to piss her off?

Have you considered purchasing a bicycle? {Or do you already have one?}

I can't drive either but I'm happy not having a car, even though my mom in the past has tried to trick/force me into learning how to drive, when she knows that I'd rather not.

One of my in-laws has epilepsy. I can't work out if he's just really lazy, or his behaviour is due to either the disease or the medication he is on. He spends a lot of time sitting on the couch and sometimes he doesn't even bother to watch the TV. If he is minding his own infant son, who is crawling, you have to keep watch to make sure the baby doesn't crawl out of the room or else he will forget about the baby altogether. He can do things if he is given a big enough push. If you push him all day he will do his exercise, take his medication on time, go and help out in the family business, and help the older son with his homework. He can be quite capable when his mind is engaged. But as soon as you back off just a little he will be back to his old trick of doing nothing and not even taking his medication properly. He recently had another seizure which was probably due to stress.

I think he needs a review of his medication and also to change doctors since his current one seems to have given up on improving his situation. Also I don't know what is the best way to help him or what to say to the family to help him. He has been in the 'sick role' for far too long and needs to feel that sense of responsibility for his own life. I want to help him to get more out of life, for his children's sake if not for his own. But I don't know what can or should be done.

<---- Petit mal seizures.

I know I had an absence seizure in 8th grade. The special ed teacher was kneeling down, helping me out, next thing I knew, she had walked around and I realized I had a blank look in my eye.

That's the only seizure I know about.

So I was diagnosed with right temporal lobe epilepsy a little while back. It was not a huge surprise, and helped explain a lot of things.

They started me on some anti-convulsants (keppra at the minimum dosage, then progressively increasing up to 1000 mg 2X/day), and after many problems with side effects, they switched me to a new medication (lamictal [SP?]) which seems to give me the exact same trouble. I am not doing well with the side effects. The medication seems to exaggerate a lot of the social, emotional, and concentration problems that I am already plagued with. I am having significant problems at work, especially with word retrieval and simple conversations, which is not something that can be long term if I want to keep this job (which I do).

The neurologist wants to add another medication to the mix, as my seizures have not stopped (or even slowed). I find the seizures to be an inconvenience, but I usually know when the big ones are coming (I start to hear constant whispering 5-10 minutes before a tonic-clonic seizure). The biggest worry is that it will happen at work, where the people working around me are already somewhat uncomfortable with my presence.

I finally have a job where the results matter more than my ability to interact pleasantly with my supervisors, and I am beginning to worry that this is going to screw everything up after I have struggled so much for so many years to climb above the poverty level.

Can anyone relate to this/provide me with some advice?

I had a Grand Mal seizure on my way back from school one day (I was 14 at the time). The first thing I noticed was that my vision was blurred, and the next thing I knew, I was in the ambulance on the way to the hospital. I was given Carbatrol to control my seizures, and I haven't had one since.

I used to get absence seizures when I was younger. I would see lights and colours during my seizures but I would be blanked out. I didn't realize I was blanked out and I couldn't tell based on gaps in my memory but my parents tell me they witnessed me wetting myself during a blackout and I don't remember it at all. All I remember are the seizure auras and I have some false memories regarding my seizures.

I was medicated while being monitored by EEG. Eventually the EEG showed that the seizure activity had calmed down to the point where it was limited to a small portion of my brain and I was only having simple partial seizures. I still saw the auras but I didn't blank out while I was seeing them. Since I didn't realize when I blanked out before it seemed the same so I didn't know what the problem was before or why I was coming off my medication. I always thought the auras were the problem but the issue was actually the blanking out.

I didn't say anything about the auras when I was taken off the meds because I didn't want to have to go back on them but my parents and the doctor all knew from the EEGs that I was still seeing them during simple partial seizures. It was okay because I wasn't blanking out.

Eventually the auras went away as well. I wasn't having simple partial seizures anymore. I haven't had a seizure in years and I haven't needed medication.

Is anyone here every consciously aware they are having a seizure? What's that like? I'm not epileptic, so I don't know.

I have both grand mal and petit mal seizures. I get petit mal seizures every now and then, and the grand mals are controlled by medication well. I actually once saw myself having a seizure. I was in for monitoring, and I had a seizure in the hospital. The doctor let me see the video of it afterwards. It was...weird.

I hate that I can't drive, too. I live in a very automobile dependent city. If you don't have a car, you're very limited. That's one of the reasons I'm very in support of public transportation. The public transportation here is very bad, and I wish it were better.