Epilepsy

[Kalinychta]

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?

 

[Aspychata]

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.

 

[Trophonius]

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.

 

[Fino]

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

 

[Kalinychta]

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

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).

 

[Fino]

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).

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?

 

[Kalinychta]

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?

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

 

[Kalinychta]

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?

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

 

[Fino]

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

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?

 

[Fino]

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

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.

 

[Kalinychta]

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?

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.

 

[Autistamatic]

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.

 

[Streetwise]

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.

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

 

[Streetwise]

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?

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

 

[Streetwise]

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.

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

 

[Aspychata]

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

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?

 

[Aspychata]

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)?

 

[Kalinychta]

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)?

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!

 

[Skyblue1993]

Just read this article that says 20% of people with Autism will also have epilepsy. I didn't realize the comorbidity was so common!

 

[watersprite]

I didn’t know about this apparent likely co-morbidity of epilepsy with autism. I have noticed that a deja vu is more likely to happen to me when I’m under some sort of stress. So is the - always dreaded - nightmare.

There’s the scary one that makes me bite my tongue, and an extra weird one that happens very occasionally, in which a loud bang or gunshot-like-noise sounds in my head. That always made me worried I have un-diagnosed epilepsy.

I have spent a few minutes reading various previews/abstracts.

Here is a quote from the NIH, about déjá vu.

“For more than a century, the déjà vu experience has been examined through retrospective surveys, prospective surveys, and case studies. About 60% of the population has experienced déjà vu, and its frequency decreases with age. Déjà vu appears to be associated with stress and fatigue, and it shows a positive relationship with socioeconomic level and education.

Scientific explanations of déjà vu fall into 4 categories:

dual processing (2 cognitive processes momentarily out of synchrony),

neurological (seizure, disruption in neuronal transmission),

memory (implicit familiarity of unrecognized stimuli),and

attentional (unattended perception followed by attended perception).

Systematic research is needed on the prevalence and etiology of this culturally familiar cognitive experience, and several laboratory models may help clarify this illusion of recognition.”