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FalconPunch39
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16 Jun 2010, 11:41 am

I was diagnosed with Aspergers's Syndrome at a very early age. And before I made it to high school I had my first seizure attack. So I was told I also have Epilepsy. Then I read that it is a common thing to have both at the same time.

Does anyone else have this problem? If so please share your experiences.



persian85033
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16 Jun 2010, 1:08 pm

I was diagnosed with epilepsy since I was two. I dislike it, yet I can't imagine my life without it, if that makes any sense. They told me I could have my left hipocampus or something removed, but like I said, I can't imagine my life without it. Fortunately, I never had a seizure in school. I didn't get my first one away from home until I worked at a vet hospital. And to top it all off, the head doctor there was afraid of me because of it. But I get small seizures pretty often. The bigger ones I only get every now and then.

What I always find oddest is, I'm the one who has seizures, yet I really have no clue what they look like. No one else has seizures, and they know. I saw a video of my self having a seizure. I was in the hospital for monitoring, and they had me off my epilepsy meds, and hooked up to electrodes, and they had a camera in the room, and I asked to see the video. When I saw it, I was like 'wow'. It's so strange. It's like...the 'expression' on my face, like such a thing that I didn't know it was possible? Then how I moved my limbs. I'm always very sore afterwards, and with a very bad migraine. I hate the postictal stage. And what I hate most is when they rush me to the emergency room after a seizure as they've done a couple of times. That's a five hundred dollar copay, and there's really nothing they can do for me!! !

Then once, they did something called a wada test on me. They put first one half of my brain to sleep, and then the other while holding pics, asking me to say what was in the pics, and then showing me again to see if I remember. It was like, I KNEW what was in the picture, and I could name it, but I couldn't get the words to come out. And then I wanted to say 'wait! I know what it is!', when they switched to another one, but I just couldn't talk. I also couldn't quite see with one eye, or move one hand. I suppose it's like a stroke?

They did the monitoring and the wada to find out if I was 'eligible' for surgery. The thing is, I never really had any intention of getting the surgery. It was more that I simply had to find out exactly where the seizures were coming from, and what type of epilepsy I have. And perhaps because I find my own brain fascinating. Due to my AS and epilepsy, it must be very different from that of most people I know. If one could 'see' mind, emotions, what would mine be like? Would it be more colorful? Would the change that comes over it with something relating to my special interests? More colorful, more complex, more beautiful? I think of the oddest things. 'Seeing' minds indeed. I guess I do read too much, after all.

It's medial temporal lobe, and the seizures originate in the left hipocampus. I would have also done the monitoring when they put the electrodes inside your skull, but if I did that, then I would have had to have the surgery done. The doctors already thought I was weird enough for doing the wada, and having backed out at last minute.

My auras also include small seizures. I feel fear, like as if I were terrified. As if I want to run but can't. I feel frozen. I get olfactory and gustory hallucinations, too. And I can't remember what happened before or after the seizure. My memory is 'erased', usually of the last couple of days.


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unduki
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09 Nov 2011, 9:27 am

I'm self-diagnosed Aspie, at 52. Two years ago, I was diagnosed with partial epilepsy. I have seizures that show up on and an ambulatory EEG but as far as I can tell, they only cause a migraine at their most extreme. I'm getting better at recognizing the signs and have, I think, prevented a few migraines. I recently read that it's not uncommon for aspies to also have epilepsy. I wish I could remember where I found the article - perhaps it was on the Autism Women's Network.



hanyo
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09 Nov 2011, 9:34 am

As far as I know I don't have it but my mother recently told me how once when I was a little kid I had a test done that involved measuring my brain waves when I was awake and asleep. I don't know why they did that and it doesn't sound like a test they automatically give everyone.

I think my cousin had seizures from something when he was a kid and my grandmother had a cousin that had epilepsy.



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09 Nov 2011, 11:27 pm

I have AS, and also have epilepsy which was diagnosed when I was 19 years old (I'm in my 40s now). I have complex partial seizures with (as far as anyone can tell...I didn't have the wada and other presurgical stuff done because I didn't want to have surgery and I was very blunt about it) onset in the left temporal lobe. I've been doing well with seizures since about 1998 and have only had them with things like high fevers, on rare occasions.

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10 Nov 2011, 4:35 pm

I have AS and I have seizures as well. I frirst started having seizures when I was 19. I am on medication for it although I still will have petit mal seizures fairly regularly and I have grand mal seizures once or twice a year. I am good at recognizing the signs so I know to lay down if I feel a grand mal coming on and I also know to sit down when I have a petit mal.

I hate the seizures as before that I was able to drive and now I can not be insured as the doctors don't think it will ever be completely controlled. I went from having a fair amount of freedom to now having toa sk my wife to drive me from place to place. She doesnt mind but it still drives me crazy.



Aspiewordsmith
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15 Nov 2015, 9:40 am

I have been diagnosed with epilepsy in 1987 and Asperger syndrome in 2003. My epilepsy has been in remission for five years now. I had temporal lobe seizures on and off since 1974 and other kinds of seizures later during my adolescence and early adulthood and had my last seizure in the Summer of 2010.

I have controlled it with either tablets from the doctor, or later on keeping it in remission by eating spacecake which also does wonders fro my PTSD that I developed the same year, 1974.



Noca
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15 Nov 2015, 9:53 am

I had 4 grandmal seizures as a kid ages 4 to 6, was on valproic acid for a while and then my seizures just nevet happened again. I haven't had a seizure since.



Simmian7
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15 Nov 2015, 5:55 pm

I prolly am. I do zone out quite a lot. Like Absence Seizures. I did have one scary moment at work once, all I know was that I lost track of a small chunk of time...and a coworker said she had been calling my name and I looked a little pale.


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Grammar Geek
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15 Nov 2015, 7:37 pm

I had my first tonic-clonic seizure on November 29, 2007, and I had my second one on March 19, 2007. After that, I was put on medication to stop them. They stopped the tonic-clonic seizures, but I still had simple partial seizures, some of which occurred at very bad times, such as when I was in a play. Multiple EEGs and MRIs revealed my seizures to be coming from the left temporal lobe that contained a lesion and a non-working hippocampus. Since I wanted to be able to drive, I opted to have the surgery to remove my left hippocampus last year. I have had no complications and now possess a driver's permit.

persian85033 wrote:
Then once, they did something called a wada test on me. They put first one half of my brain to sleep, and then the other while holding pics, asking me to say what was in the pics, and then showing me again to see if I remember. It was like, I KNEW what was in the picture, and I could name it, but I couldn't get the words to come out. And then I wanted to say 'wait! I know what it is!', when they switched to another one, but I just couldn't talk.


Yes, me too. This is because our seizures are/were from the part of the brain that has the Broca's area, which controls speech.

Quote:
It's medial temporal lobe, and the seizures originate in the left hipocampus. I would have also done the monitoring when they put the electrodes inside your skull, but if I did that, then I would have had to have the surgery done. The doctors already thought I was weird enough for doing the wada, and having backed out at last minute.


Assuming you can't drive and don't want to, then there's probably no need to have the surgery. The immediate aftermath of it wasn't bad, but the days afterward were some of the most awful days of my life. Constant vomiting, inability to sleep, extreme crankiness due to being stuck in the same room day after day. It was worth it, though; I'm so glad my seizures are gone. Plus, I have a cool scar and a picture taken of my brain during surgery!