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PixelPony
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30 Aug 2012, 3:14 am

Do any of you have seizures along with your diagnosis? Could you share your experiences?

I just told my psychiatrist about a bunch of non-autistic stuff from my past. One point made her think I'm having small seizures fairly frequently. I guess I was hoping to compare notes with anyone who gets them as well. Mystery will be solved next month when I get an EEG, but I'm impatient.

What tipped her off was an experience I have periodically where I'll suddenly not know where or who I am. The amnesia-like feeling lasts just a couple seconds, then my sense of self, my awareness of my past, my surroundings, etc, comes trickling back in over the next 30 - 60 seconds. After that, I'm fine and functional again, but often experience a sort of detached "mystical" feeling altered state for up to half an hour after.

But now that seizures have been pointed out, I see other instances that seem to apply as well. Like a sensation of a lightning bolt hitting my brain, or like getting hit on the side of the head with a bat; the pain is just an instant, but it leaves me staggered and disoriented for several seconds.

Anyone else have remotely similar experiences? I know it's not exactly an autism question, but it's relevant I think, since 10-15% of aspies have seizures.


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chris5000
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30 Aug 2012, 3:19 am

wow I've experience these before I did not even think that they were seizures.



whirlingmind
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30 Aug 2012, 5:01 am

PixelPony wrote:
Do any of you have seizures along with your diagnosis? Could you share your experiences?

I just told my psychiatrist about a bunch of non-autistic stuff from my past. One point made her think I'm having small seizures fairly frequently. I guess I was hoping to compare notes with anyone who gets them as well. Mystery will be solved next month when I get an EEG, but I'm impatient.

What tipped her off was an experience I have periodically where I'll suddenly not know where or who I am. The amnesia-like feeling lasts just a couple seconds, then my sense of self, my awareness of my past, my surroundings, etc, comes trickling back in over the next 30 - 60 seconds. After that, I'm fine and functional again, but often experience a sort of detached "mystical" feeling altered state for up to half an hour after.

But now that seizures have been pointed out, I see other instances that seem to apply as well. Like a sensation of a lightning bolt hitting my brain, or like getting hit on the side of the head with a bat; the pain is just an instant, but it leaves me staggered and disoriented for several seconds.

Anyone else have remotely similar experiences? I know it's not exactly an autism question, but it's relevant I think, since 10-15% of aspies have seizures.


When I was 12 years old, I used to faint. At least I thought it was fainting. I would get this altered vision that made me know one was coming. It was like the static when an analogue TV loses the channel, sort of lots of little interference dots that increased in volume until I fainted. I found out afterwards that what I was having were like epileptic attacks, as I was laying on the floor with rolling eyes and jerking movements. I had an EEG and was told there was an abnormality. I had to have tranquilisers. Anyway, they stopped after a while. Years later I asked my GP what the abnormality was, he just dismissed it and said it was something they said I would grow out of, but I found out later that it was noted on my records as 'abnormal EEG'.

I have since found out that epilepsy or seizures are more common in autistic people.

http://www.ncbi.nlm.nih.gov/pubmed/16932856

I also sometimes get something that could be vertigo. In the past it's been considered to be ear infections and treated as such, but I found out my brother gets it too, and oddly enough I had an episode of it this morning. It's really scary, it's like your brain is spinning in your head and that's what your vision goes like too, you can't even stand up, your balance goes.

Balance issues are also a part of autism.


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Quinntilda
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30 Aug 2012, 9:07 am

I was diagnosed with AS before epilepsy but that seems to be my worst problem. I have had lots of stress which can cause them. which unfortunately alot
comes from battling Aspergers. I have had alot.

I first had a violent seizure which was only about 10 seconds, they said. when I was 11 and the second one came later in the year. Both were in safe spots. I have not had alot in bad places.

The most recent was coming home from a boat show where I had to be in uniform and it was humid and 80 degrees which is one of the things that can cause one.

There is history in my famiy but the other people have had 3 seizures same problems, and the otehr person has one alot but due to another cause.



Last edited by Quinntilda on 30 Aug 2012, 10:11 pm, edited 1 time in total.

Sanctus
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30 Aug 2012, 9:14 am

PixelPony wrote:
I also sometimes get something that could be vertigo. In the past it's been considered to be ear infections and treated as such, but I found out my brother gets it too, and oddly enough I had an episode of it this morning. It's really scary, it's like your brain is spinning in your head and that's what your vision goes like too, you can't even stand up, your balance goes.

Balance issues are also a part of autism.


I had exactly that yesterday.. combined with nausea... it freaked me out 8O



onks
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30 Aug 2012, 1:56 pm

PixelPony wrote:
Do any of you have seizures along with your diagnosis? Could you share your experiences?

I just told my psychiatrist about a bunch of non-autistic stuff from my past. One point made her think I'm having small seizures fairly frequently. I guess I was hoping to compare notes with anyone who gets them as well. Mystery will be solved next month when I get an EEG, but I'm impatient.

What tipped her off was an experience I have periodically where I'll suddenly not know where or who I am. The amnesia-like feeling lasts just a couple seconds, then my sense of self, my awareness of my past, my surroundings, etc, comes trickling back in over the next 30 - 60 seconds. After that, I'm fine and functional again, but often experience a sort of detached "mystical" feeling altered state for up to half an hour after.

But now that seizures have been pointed out, I see other instances that seem to apply as well. Like a sensation of a lightning bolt hitting my brain, or like getting hit on the side of the head with a bat; the pain is just an instant, but it leaves me staggered and disoriented for several seconds.

Anyone else have remotely similar experiences? I know it's not exactly an autism question, but it's relevant I think, since 10-15% of aspies have seizures.


If you mean that kind of fading out and panic or panic and fade out, I have that, too. But not that often.
But I have petit mal seizures more often.

Is there maybe a connection in between panic and seizures in that case?? What comes first?



PixelPony
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31 Aug 2012, 2:52 pm

onks wrote:
If you mean that kind of fading out and panic or panic and fade out, I have that, too. But not that often.
But I have petit mal seizures more often.

Is there maybe a connection in between panic and seizures in that case?? What comes first?


There's not really any panic in my experiences. I mean, I get panic sometimes, but it doesn't seem to be related to seizures. Although they've happened mid-meltdown before, so maybe. If so, it's panic or other strong emotion first. I usually feel a bit better after; almost like a reboot of the brain.

I've mentioned this to some friends, and what I usually get back is "That would make sense. You do just suddenly space out more than most people."



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04 Sep 2012, 7:00 pm

Sanctus wrote:
PixelPony wrote:
I also sometimes get something that could be vertigo. In the past it's been considered to be ear infections and treated as such, but I found out my brother gets it too, and oddly enough I had an episode of it this morning. It's really scary, it's like your brain is spinning in your head and that's what your vision goes like too, you can't even stand up, your balance goes.

Balance issues are also a part of autism.


I had exactly that yesterday.. combined with nausea... it freaked me out 8O


My episode that morning turned into the most severe full-blown vertigo I've ever had. I'm now on medication and starting to recover. I looked up some details and mine appears to be this:

http://www.hearinglink.org/balanceprobl ... fAodpQgAlA

(see the section down the page on Neuritis (or neuronitis) (inflammation of the nerve). Horrible stuff. Hope yours is better.


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onks
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05 Sep 2012, 4:02 am

whirlingmind wrote:
Sanctus wrote:
PixelPony wrote:
I also sometimes get something that could be vertigo. In the past it's been considered to be ear infections and treated as such, but I found out my brother gets it too, and oddly enough I had an episode of it this morning. It's really scary, it's like your brain is spinning in your head and that's what your vision goes like too, you can't even stand up, your balance goes.

Balance issues are also a part of autism.


I had exactly that yesterday.. combined with nausea... it freaked me out 8O


My episode that morning turned into the most severe full-blown vertigo I've ever had. I'm now on medication and starting to recover. I looked up some details and mine appears to be this:

http://www.hearinglink.org/balanceprobl ... fAodpQgAlA

(see the section down the page on Neuritis (or neuronitis) (inflammation of the nerve). Horrible stuff. Hope yours is better.


I had that kind of think once under water during diving. Very unpleasant. Well it went away at the surface but still I had to keep calm whilst everything was slowly turning around...
I guess one ear was warmer than the other

Is there a connection to epileptic seizures also here?



Dillogic
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05 Sep 2012, 4:21 am

Only as a toddler. I grew out of them.



Ca2MgFe5Si8O22OH2
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05 Sep 2012, 4:31 am

wikipedia says 11-39% of people with ASD also have epilepsy. that was actually one of the clues that helped me realize I was on the spectrum to begin with.

I get simple partial seizures all the time. I get jamais vu...it's not as bad as your amnesia-like version, but I'll have moments where suddenly absolutely everything in my room or about what I'm doing and where I am is just...completely unfamiliar and wrong, you know? like I'll still know intellectually that "this is my bed, that is my bookshelf, I am in my parents' house", but it just all suddenly feels completely horrible, like one of those moments in dystopian novels where you realize "holy s**t, soylent green is people!" or something, except there's no reason for it.

I also frequently get depresonalization episodes (feeling like I'm above and behind myself, a long way off, and nothing that's happening is real) that are often accompanied by sensations like suddenly down is no longer "down", but back and to the right is "down" instead, and like I'm really, really small or something.

other than that I've had multiple religious visions (only one full-blown, lose complete touch with reality kind of experience...which was the most beautiful of my life...I was an atheist at the time, haha, but saw the Goddess Nuit. I'm also not a Christian but I've seen the Virgin Mary, which always confuses Catholics) and occasional waves of sort of surreal, peaceful sensations that are as profoundly nice as the jamais vu experiences (which are less frequent) are unpleasant.

the jamais vu and the random waves of serenity can occur at any time, though usually not when I'm keyed up (in either a good or bad way), while the spatial distortion, depersonalization, and such tends to happen when I'm sitting down, alone, and writing, for some weird reason. granted for the last 15 years, I've probably been sitting down, alone, and writing more frequently than any other activity but sleeping, so this might just be coincidence.

I'm not diagnosed with epilepsy but there's pretty much no other explanation for all of the above. it's never interfered with my life or functioning and I've never lost consciousness (unless the Nuit experience counts, and that happened when I was already in bed, albeit awake, and seemed to take no time at all) so I've not brought it up with a doctor. (my psychiatrist has the philosophy that if it's not interfering with your life or making you unhappy, there's no reason for us to talk about it, and I don't have a regular doctor) between that stuff and a friend who told me I write like I have Geschwind Syndrome (I fit almost all of the other personality traits as well, hyper-religiousity, hypergraphia IN SPADES, hyposexuality, "intensified mental life", and I've gotten flack in the past for a tendency to be moralistic in inappropriate settings...if you can really say there's a wrong time to be moral, haha) it seems almost certain I have Temporal Lobe Epilepsy.

between that and the social-anxiety-disorder/depression I have, I didn't even realize I was an aspie until last month. I kept thinking "huh, I'm sure similar to someone on the spectrum" and then writing it off because I could attribute my idiosyncrasies either to the epilepsy or the anxiety disorder, which I thought were alternatives to aspergers rather than common comorbid conditions.

I've also had Bell's Palsy (the left side of my face was paralyzed for several weeks) and get random muscle spasms (confined to my face and small movements, not like flailing limbs, more like my thumb quivers faster than I could move it consciously for several seconds and then stops), so I'm just a bundle of neurological fun times.

edit: my brother is an aspie too, and he had at least one grand mal as a child, and my mom (who is NT but prone to depression) told me she gets the spatial-distortion SPSeizures too.


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