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Featured Epilepsy

Discussion in 'General Autism Discussion' started by Kalinychta, Nov 12, 2019.

  1. Yes

    1 vote(s)
    6.3%
  2. No

    15 vote(s)
    93.8%
  3. Yes, and I also know another autistic person who has it.

    0 vote(s)
    0.0%
  4. No, but I know an autistic person who has it.

    0 vote(s)
    0.0%
  1. Kalinychta

    Kalinychta Well-Known Member

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    I have temporal lobe epilepsy (focal seizures). I saw my neurologist recently and told him about my autism diagnosis last year, adding that I'd discovered research indicating a possible link between epilepsy and autism (one-third of autistics have epilepsy, said the research). Is this true, I asked him? He said: "Not really." I'm inclined to disbelieve him, though, since he then went on to say that I do not, in fact, have autism. The reason: I maintained good eye contact with him, and the 45-second chat we had had 20 minutes prior in the elevator was also good ("good" is as nondescript and impotent a word as you could wish, but however you define it, I did not find the chat good at all). I have anxiety, said he. Not autism. (The woman who diagnosed me specializes in autism and even writes books about it, but apparently Dr. Neurologist knows better.)

    I felt deeply moved to thwapp him smartly across the knees with his own stethoscope, but I rather like having a clean arrest record, so I refrained. And anyway, I'm by no means the only autistic woman who's gotten the "you're not autistic--you're an anxious, overly-emotional, hysterical female, now run along because you're breathing my air" speech from whomever.

    So...does anyone have epilepsy, what kind do you have, and/or do you know any autistic people who have it?
     
    Last edited: Nov 12, 2019
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  2. Aspychata

    Aspychata Serenity waves, beachy vibes

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    Glad you didn't post this from jail, keeping it real girl! But l agree, the medical community mistreats , misdiagnoses females with pretty much not giving a bleep about us.
     
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  3. Trophonius

    Trophonius Active Member

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    I don't, but I've read the correlation of which you speak of many times, both in books and papers.

    I also think it's unfortunate that lots of people are in a sort of psychological limbo - the vagueness of psychological diagnosis reaches the point where different practitioners may reach different diagnosis using the very same tests.

    I'd feel like changing the neurologist, solely for the reason that I feel skeptical of the abilities of a doctor who considers that easily and just by looking can reach a diagnosis - this would apply in general beyond his considerations of autism.
     
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  4. Fino

    Fino Alex V.I.P Member

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    I was told I have simple partial seizures, but I've never fully understood it in relation to my experiences.
     
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  5. Kalinychta

    Kalinychta Well-Known Member

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    Really? Do you still have the seizures, or do you take medication? They’re the same kind I have. They used to be called simple partial, but now they’re called focal onset aware (or just focal for short).
     
  6. Fino

    Fino Alex V.I.P Member

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    I still have seizures, and I take medication. Do you mean that they used to be called that in the world and the name has changed, or do you mean that your seizures specifically used to be called that and have changed name?

    A neurologist showed me a picture and explained them to me when I was about sixteen, which was about eleven years ago, so I don't really remember what it was that I hardly understood. Have you had a neurologist give you information on them recently enough to remember some of it?
     
  7. Kalinychta

    Kalinychta Well-Known Member

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    They used to be called that in the world. I’m not sure exactly what they are, though, either. Electrical storms in the brain.
     
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  8. Kalinychta

    Kalinychta Well-Known Member

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    What are yours like, by the way? When you have a seizure, what happens?
     
  9. Fino

    Fino Alex V.I.P Member

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    When I was a kid, when they started, about age ten, when I didn't know what was happening, I described it as a distant screaming. It was almost always at night, preventing me from sleeping for half the night, and happened when I closed my eyes to sleep, and it was some sort of sensation/sorta sound that sorta burst in my head. But they also happened during the day, a hard-to-describe sensation, pulsating, screaming sort of thing in my head.

    As I got older, they happened less frequently. They definitely can be triggered by stress, including the stress of prolonged, intense effort. Sometimes there's a sort of after-effect, lingering feeling that continues for hours or for the day. Sometimes I think dehydration and/or hunger can cause them and lack of sleep. Also, reading from screens for long periods, such as a phone or computer.

    Those mostly stopped once I started taking medication. Now they're rare, less intense, and brief.

    What are yours like?
     
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  10. Fino

    Fino Alex V.I.P Member

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    I do remember "electrical storms in the brain," being a description used that stuck in my mind, so that's how I've always imagined them.

    Also something about my brain going too fast stuck in my mind, although I don't specifically remember hearing it. And an analogy to a wire that has a cut in it and is sparking. Not sure how to describe that right but I feel like I didn't.
     
  11. Kalinychta

    Kalinychta Well-Known Member

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    That’s intense. They must have really frightened you when you were a kid. That’s crazy that the “screaming” lasted for that long, too. My seizures last for 30-45 seconds. Suddenly I feel like I’ve snapped into an alternate reality, and I experience extreme deja vu—I feel like I’ve lived that exact moment before. Everything feels distorted. (I don’t have any experience with drugs, but I think the sensation might feel like being on a low dose of an hallucinogen, such as lysergic acid.) I also feel a buzzing or vibration type of sensation in my head, although there’s no sound or movement (kind of like your screaming sensation, I would imagine—screaming but with no actual sound, right?). They also feel really, really good, like my brain is having an orgasm. Then they end, and I feel tired and groggy. When I was a kid, the sensations were stronger, and I’d always get a bad headache afterward.

    I don’t understand what happens in our brains either. The electrical storm and cut wire analogies work. I wonder if there is a connection between our epilepsy and autism.
     
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  12. Autistamatic

    Autistamatic He's just this guy, you know? V.I.P Member

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    I'm not epileptic but I've been investigated for it thrice, following what looked (and felt as far as I can tell) like seizures but were in fact autistic burnout.
    The figures you quoted are well within the accepted range BTW. Official figures and estimates vary between 10-40% of autistics being epileptic, but even at the low end, that's a significant proportion and well above the non autistic population.
     
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  13. Streetwise

    Streetwise very cautious contributor V.I.P Member

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    When you’re talking to the neurologist again remember my grandmother sitting in her GPs office pregnant and telling her GP she was pregnant you guessed it the GP was a man so he couldn’t be pregnant according to him whatever she had he had but not this time
     
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  14. Streetwise

    Streetwise very cautious contributor V.I.P Member

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    I have a feeling an undiagnosed relative had one seizure I know of haven’t spoken to him for a long time
     
  15. Streetwise

    Streetwise very cautious contributor V.I.P Member

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    I don’t think it’s just the medical community,My mother was told by the disability department that she could not be given a washing machine because she had daughters solely because her children were female
     
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  16. Aspychata

    Aspychata Serenity waves, beachy vibes

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    l like electrical brain storm, it's very descriptive, l am going to use it if cornered on something stupid l did. Who can argue with that? To the cop: sorry officer l ran the red light- l was having a San Andreas fault moment, can we let me slide? pretty please?
     
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  17. Aspychata

    Aspychata Serenity waves, beachy vibes

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    Could you have it at nite and sleep right thru it, could you wake up from a nightmare that was a result of it shocking you to immediate alertness(seizures)?
     
  18. Kalinychta

    Kalinychta Well-Known Member

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    Interesting question. I don’t believe I’ve ever had one while sleeping, nay. I wonder why not. They had a curious way of happening when I was in water or touching water e.g. showering, water running in sink, washing dishes, etc. No tectonic action while sleeping, though! Now I’m going to think of my brain as a mushy San Andreas fault. Ha!
     
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