Autistics with epilepsy. question- am I having seizures?

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I have a question for Aspies/Autists, all diagnosed spectrumites who are also diagnosed with epilepsy. I have no issues with people who self diagnose. I did not have an official diagnosis for 47 years. But for this question, it is important to distinguish because it is important that those who answer have an actual diagnosis. This is more like a research type question. Anyone can feel free to answer, whether you have a diagnosis or not, if you just want to give an opinion. I welcome all opinions. But please specify if you are officially diagnosed so that I can tailor my research. Thank you.

Very recently, I have been experiencing what we think are petite mal seizures. I went to a neurologist the other day and he spoke to me and asked me questions for about 45 minutes or so but did not do any actual brain testing with any kind of equipment at all. Now I know this guy has an amazing reputation but I am not convinced that he can tell what kind of electrical activity is happening in my brain by only asking me questions. He told me that what I am experiencing is not seizures. He has not given me a concrete answer to what is happening in my brain and is only telling me that my brain processes overload differently than others and that these episodes are basically brain tension being released. He said it is neurological but that it is a physiological response to overload.

Well, to me, that is just the definition of a meltdown. So for those of you who have a diagnosis of ASD as well as a diagnosis of epilepsy, how was your epilepsy diagnosed and what kind of seizures do you have? And are you aware of them happening while you are having them?

When I am triggered, I get light full body shakes. These I only notice when I am lying down on my bed. Or, not at the same time, speech that becomes so slurred that it is completely unintelligible and I cannot pronounce consonants, and I lose perception of time. Sometimes the speech issue and time loss perception happen together. Losing perception of time means that for me I feel like something that took 5 minutes took an hour or something that took an hour took five minutes, depending on whether my brain is either racing or slowed down. I am fully aware of my body shaking when it shakes, and when I lose speech, I am aware that my speech is off but I am not aware how bad it is. Others had to point it out. When I lose perception of time, I am not aware that I am doing that.

I am trying to figure out if what I am having is actually seizures or not.
Thank you.

I don't have epilepsy.

You should get examined by another neurologist--a "second opinion."

How is everything going otherwise?

Hey Kraftie, Good to see you. I have been going through hell and back in my personal life but I am still here. I would love another opinion. I want to see what people say here first though.

I did great at Special Olympics Worlds in March, I know you want to know about that. Advanced level alpine skiing, bronze in super G and Gold in giant slalom. We had to choose two the the three events. I am glad I did not choose slalom, it was a tough course. The advanced courses were very difficult and I had a tough time over there with all the over stimulation and I had a bad fall and got hurt badly right before my first race but still managed a bronze. But overall, it was an amazing experience and I am aching to do it again. So in two years, the World Summer Games will be in Abu Dhabi. I would love to qualify for kayaking. I think I have caught the bug!

I find myself in peculiar postures, at times, but am not diagnosed, formally.

I think, the doctor's encyclopedic knowledge does not rival the encyclopedia, and there are pro's and con's to receiving treatment -- especially, if you don't like that kind of attention.

Some would definitely be annoyed by the testing and other options, which can be obtained, independently, if you are resourceful. Noone asks for qualifications, in real life.

I had simple partial seizures (the new term for petit mal) before getting surgery to stop them and have an official Asperger's diagnosis. My epilepsy was diagnosed after having a huge tonic-clonic seizure at the age of 11. If you have seizures with Asperger's, I've heard that's around the age when they usually begin. I was not aware of that seizure, but I was aware of all my simple partials.

Do you have auras, i.e. do you know when these are going to happen a minute or two ahead of time? Those are a classic sign of seizures. When you said "when I am triggered," I'm not sure what you mean by that. Triggered in what way? My seizures usually happened at completely random times, but I noticed that they did tend to increase when I was stressed. As for speech being slurred, during my seizures, I was hardly able to talk at all. If I tried really, really hard, I could make sounds, but they didn't resemble words at all. I didn't really lose perception of time, but I wasn't completely sure how long the seizures lasted. I think around a minute or two, but I was always extremely exhausted after them and needed to nap.

Overall, these don't really sound like seizures. I think your neurologist may be correct, but obviously, since I'm not experiencing what you are, I can't tell you for sure.

I have the pronunciation issues, etc, which you have discussed. Also, with my tongue, breathing, and back. (I am being very generalized, here, to avoid tmi, and am sometimes criticized for that.) This class of drugs, which are within my means to obtain, if I wanted them, have extremely negative side affects, as opposed to avoiding triggers and calming exercises and other diy methods of stress release. I personally feel that I am trading one set of dangers for another but can't make that decision for you.

We need down time, and we have to make ourselves do it. Sorry for your troubles and good luck with that.

Not official yet but I have several diagnosed family members. I started have tonic clonic seizures at about 6 months old. I had them for a few years. Everyone thought I had grown out of them until a teacher rang my Mum and said she was concerned because I seemed to miss things in class. Back to the neurologist and another EEG. It showed I was having absent seizures. And just so you know, a normal EEG does not mean someone does not have seizures. it just means you did not have one at the time of the EEG.

Sounds like a panic attack to me, they are def connected to your stress levels as you describe them. But see another doc. As your friend who can only pretend to know what she's talking about, that's my advice! There could be a real medical condition that is triggered by strong emotion.

What's going on at home, or can you not say?

I finally got to see a neurologist (instead of a psychiatrist). The neurologist diagnosed me not with epilepsy but with syncope, which the dictionary gives as

Pathology. brief loss of consciousness associated with transient cerebral anemia, as in heart block, sudden lowering of the blood pressure, etc.; fainting.

That's pretty much what he said. I didn't think much of the Dx because my episodes were very dramatic and without warning and I would wake about 8 feet away from where I started. I wake paralyzed and blind; it takes about an hour to be able to move. Hearing comes back first.

But I've been doing what he said to do and I feel better. I should mention this was the top dog neurologist in our neurology hospital. It's a teaching hospital so I had to be Dx'd by a young doctor who then conferred with the top dog, who came in and explained things to me.

Nobody looked at my brain. It was the usual "squeeze my hand" and stuff like that. A family doctor does those things too.

Things he said to do:

- Do not stress. Practice being even-tempered.
- When you wake, sit on the edge of the bed and tap your feet for a minute or two (levels blood flow).
- When sitting and moving into standing, put your head up straight and breathe in.

Especially he said that's what causes those horrible bathroom accidents - people sitting on toilet with their head down suddenly stand and crash, probably into something ceramic.

I'm telling you all this because I wish somebody had told me. I hope I didn't go overboard.