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Purplefluffychainsaw
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16 Mar 2006, 4:07 pm

Hey. I got diagnosed as having photosensitive Epilepsy this evening (not so surprising, seeing as I'm photosensitive anyway) and I was wondering if any other autistics/aspies have something similar. My mother and I thought that it might be to do with my autism.

Anyway, if any of you are, do you take drugs for it, or whatever? I was hoping not to have to take meds, because I don't like them and I'm bad at remembering to take them. I think I had some other things to ask, but I'll add them later because my father's asking me to go. I just wanted to how other people handle it.


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KingdomOfRats
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16 Mar 2006, 4:28 pm

I had something similar from toddler age till around 8-convulsions/seizures caused by a bad reaction to a vacination,and had to take Epilim syrup back then.
And have been on the anti epileptic drug-Tegretol/Carbamazepine now since 2001 for Trigeminal Neuralgia.


The problem with drugs like Tegretol,gabapentin etc is at a high enough dose,it's common to get hallucinations,distorted hearing and so on.
Someone I used to know [with Epilepsy] who took Tegretol told me she was driving on the motorway and nearly lost control of her car when she saw something jump out at her [hallucinations].

Decide whether medication would be a real benefit,for instance,is the fitting quite common enough to warrant taking meds,or is it rare?
It isn't worth the side effects if the seizures are a rare occurance.

It is possible own Autism is due to fitting,I was told this by the doctors I have been to,they can't prove it so it's only a possibility.


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Tally
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16 Mar 2006, 4:53 pm

Apparently there is a slightly higher incidence of epilepsy amongst autistics than in the general population, so there may be a link, but no one's quite sure really.



Litguy
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16 Mar 2006, 6:54 pm

Both of my sons are diagnosed with autism and both have seizures. There is a clear link between autism and epiloepsy, from what I understand, although, as with autism itself, they do not have a clear neurological picture as to why.

My older son is on Trileptal. The younger on a combination of Tompamax and Tegritol.

Neither one has had a seizure in years thanks to the medication.



Sean
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16 Mar 2006, 7:43 pm

If you do have to resort to using anticonvulsants, try depakote only as a last resort!



jman
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16 Mar 2006, 8:18 pm

i had seizures in my teens between 16-17 but despite periods where I dont take my meds and heavy drinking I haven't had any since..



Jerick
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16 Mar 2006, 8:39 pm

you know whats funny> well i dont have EPILEPTIC seizures but i got FEBRILE (those are the ones you get when you get a high fever) seizures (well i havent had them for a few years)... its funny cause i have AS and i dont get the mainstream sort of seizures, but i get fever seizures... funny aint it.



OTTILY
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17 Mar 2006, 5:00 am

I have some kind of epilepsy (not sure the exact name), not convulsions, it's like a wire gets crossed in my brain and I smell fire, or I get depersonalisation for a few seconds/minutes. I was on carbamazepine for a while but the way they made me feel was much worse than the actuall "fit" so I don't take them now. It only happens rarely now anyway.


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Purplefluffychainsaw
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18 Mar 2006, 10:30 am

Yeah, I knew about the hallucinations thing, and that was one of the main reasons why I didn't want to take meds. I'm mucked up enough already without meds to add to that. I'm only going to try them out if I have another seizure (not the absence seizures because I've been having them quite regually, I mean a proper fitting seizure, if you know what I mean. I can't think of a better way to say it).

Having said which, I spent last night at a friends house, and we were drinking and we spent most of the night in front of the TV and I was still okay, so I'm guessing I should be okay. Hopefully.

I know in the UK there's a law about not driving after a seizure. I'm old enough to drive, but I wasn't intending to learn to drive until after I'd done university anyway. Do you have that where ever you guys are, and if you do, do you find it a big problem? My friends have offered to taxi me, but I doubt we're going to be close enough for that to work after we finish collage (in a years time).

Anyway, thanks for the comments, guys. It's cool to know I'm not alone. :)


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18 Mar 2006, 10:59 am

From what I understand of it, I have undiagnosed partial seizures (for awhile I was considering getting them checked out and diagnosed but then I reconsidered since I want to be able to drive and they are relegated to night-time). They haven't been too serious thankfully. Not like my grandmother who had Temporal Lobe Epilepsy and was just absolutely insane it was so bad. Though from what I can tell, my seizures do seem to begin around the TL area. I have auditory, somatosensory, and then finally motor seizures. On occasion in some of the worse episodes, I've also had very mild visual hallucinations. They are very mild compared to what they could be. And most likely unless the seizures get any worse, I won't get them dxed.

I find they have some general triggers though these triggers for me don't seem to act on them immediately but only raise the probability that later that evening I'll have some small seizures: spending a long time on the computer in the evenings; watching tv in high contrast environments for a long time; and finally absolute quiet seems to finally bring them on. It's good that these have such avoidable triggers and so I'm better able to regulate their severity.

What's interesting though is that I've found I can stop a seizure if I put on headphones and play music. It's something about that utter silence at bed time that finally brings them on. And probably gives more credance to their focal point being in the temporal lobe, most likely the right TL.

As for the occurence rate of epilepsy and ASDs, there is a lot more than a slight rise in occurence rate than in the general population. I believe some have sited that up to 30% of us will have a seizure (if not outright epilepsy) at one time or another. This is the highest percentage I've heard and I think it was Mish who gave it. I might have slightly misquoted her though.

I think in the general population, epilepsy is usually less or around 1%.


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18 Mar 2006, 11:05 am

I've had Epilepsy for 5 years and I take Lamictal. I'm not photosensitive.



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19 Mar 2006, 5:41 pm

I've had Temporal Lobe Epilepsy all my life (I'm 33) and take medication (Carbamazepine).

The seizures have never been controlled by medication and I still have them. Every couple of weeks I will have a simple partial seizure (ringing in the ears, confusion, also jamais-vu & panic attacks on occasions).

I took Sodium Valproate for a while and went up to nearly 20 seizures a week so I stopped taking it.

Phenitoin: I have an allergic reaction to it
Lamotrigine: makes seizures worse
Keppra: I won't take it, can cause depression and suicidal feelings.

I've got used to it over the years and while epilepsy remains irritating it is just something like me having blue eyes or brown hair.



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19 Mar 2006, 10:00 pm

Torak wrote:
I've had Temporal Lobe Epilepsy all my life (I'm 33) and take medication (Carbamazepine).

The seizures have never been controlled by medication and I still have them. Every couple of weeks I will have a simple partial seizure (ringing in the ears, confusion, also jamais-vu & panic attacks on occasions).

I took Sodium Valproate for a while and went up to nearly 20 seizures a week so I stopped taking it.

Phenitoin: I have an allergic reaction to it
Lamotrigine: makes seizures worse
Keppra: I won't take it, can cause depression and suicidal feelings.

I've got used to it over the years and while epilepsy remains irritating it is just something like me having blue eyes or brown hair.


Oh, you've had ringing in the ears, too? I'm glad to find another person who's experienced this symptom. Mine always start with that. I've suspected that mine have their focal point in the Temporal Lobe, but thank you for adding more confirmation to that.

I believe (though am not totally sure) that I've been having complex partial seizures. It's hard to tell whether my consciousness is affected or not because the symptoms are just plain distracting so that my attention always turns inward.


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Chimaera
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03 Apr 2006, 4:50 am

I became aware of my seizures as a young teen. They began as dream-like states. At 19 I began having grande mal seizures. I have been on many anti-convulsants but Lamictal is the only drug that has controlled mine completely.

I also have a strange sensation in my ears before seizures and when I am under intense stress or illness. I have temporal lobe epilepsy.

When you have it under control you can have a fairly normal life..lol.
If you can figure out what normal is.


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emmaC
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16 Mar 2008, 2:03 pm

I don't have epilepsy, but what's it like to have it? How does it feel if you feel a seizure is coming?



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16 Mar 2008, 2:34 pm

emmaC wrote:
I don't have epilepsy, but what's it like to have it? How does it feel if you feel a seizure is coming?
It isn't nice, well for me it isn't, I start out not being responsive to anything/anyone, vision goes blurred, then the seizure hits me (grand mal type, the really nasty one), I come out of that and know I have had a seizure, I usually am very tired afterwards, so I go to sleep at the first opportunity, fortunately for me I have not had a seizure since 2001 as I am on meds, which allows me to get on with my life as normal.

As I have both AS and photosensitive epilepsy, I am extremely photosensitive, I can see things flickering that most people cannot (usually TVs, computer screens, certain types of lights, and, (and this was one I didn't realise until 2003/4) some electronic destination boards fitted to most new buses, some others of those don't flicker though, but I cannot ever figure why, also this (obviously) means strobe lighting is something else I have to avoid, otherwise I can get on with life uninterrupted


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