Seizures and Asperger's Syndrome

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I also had psychomotor seizures that were long staring spells (though my sense of time was altered). Anyway they stopped about 10+ years ago, and went away peri-menopause. I still take the meds though, as I haven't gotten around to seeing someone so I wouldn't need to. I don't know if I count, I am not officially dxed. But I was dxed as having nonverbal learning disability. However, I have the special interest characteristic.

--des

The proportion of those with HFA/AS and epilepsy is certainly lower than for those with LFA/LD. From memory, it drops from around 15-20% in LFA to around 7-8% in HFA/AS.

I'd also guess, no stats at all, that lfa have more grand mal seizures.

--des

My daughter has grand mal seizures. When they happen, it's usually within an hour and a half after waking. She started having them shortly after puberty.

I have AS and I have had seizures for the past 10 years. They did not occur until I was 22, but once they did they occurred with relative frequency. At first the seizures were taken very seriously by medical professionals, but once they determined that the seizures were not related to a life threatening tumor or other affliction I was dismissed. In the past year I have been diagnosed with AS and have also found out that the seizures are related to this syndrome. One question that I have for others who have AS related seizures is do you have a pressure in the base of your skull before the seizures occur? This the way mine present themselves, and have wondered if this is common to this type of seizure.

I have strange episodes that I've considered might be simple partial seizures. I quite clearly recall having them - exactly the same - between the ages of 5 and 10, then they seemed to stop for some years, then started to happen again when I was around 19. I can not have one for months, then have several over the course of a week. There are definitely two distinct kinds:

a) a change not in actual vision, but in perception; the sensation of things some distance away being close up against my face. A very claustrophobic feeling. Accompanied typically, for some reason, by a numbness in my hands. This is what I remember having when I was young.

b) a feeling of unreality with my surroundings, or being in two places simultaneously. Familiar places look unfamiliar.

Through both kinds I can keep walking/functioning/etc., and although I have never attempted to have a conversation during one, I think I could, although I would probably sound somewhat confused and distracted.

I used to 'sleepwalk' as a child, getting out of bed and walking around doing things and talking to people, but it was clear from what I was saying that I was talking about things from a dream and trying to act the dream out. I've since read that this can happen if a seizure occurs during sleep.

I have HFA (AS) and seizures. Tentative diagnosis of TLE from one neurologist, but two others revised that to seizures secondary to Asperger's. So I'm maintained on clonazepam, which has greatly reduced the frequency and intensity of the seizures.

My seizures include mostly sensory and affect issues, not motor issues. A really bad seizure used to "ground" me for days, and I have gaps in my memory from some of those times. I otherwise have a good biographical memory. But since sensory issues are themselves a part of my AS, it's hard to parse what is going on sometimes. I've also been diagnosed with Sensory Integration Disorder by one psychologist, and neurologists concur that I have sensory issues or SID.

But through trial and error I discovered that a "low stimulation lifestyle" helps reduce the likelihood of seizures. Strong light, particularly sunshine, is a powerful trigger, as are high-pitched or low, throbbing noises. Air travel is therefore problematic, as is summer.

I also have been through hallucinations in all five senses, dissociation, and derealization, and been treated with neuroleptics and antipsychotics during these periods (the meds did not work, as I am very intolerant of most medications, and the majority of foods).

Obviously, I am not as high-functioning as many here. I still consider myself HFA, but with obvious caveats.

The best suggestion I can make for anyone with seizures and/or AS (ASD) is to get tested. I've had MRIs, EEGs, full neuro workups, and despite the cost, am glad I did. I've seen three neurologists, four psychiatrists, six therapists, and also been evaluated by several other specialists to check related issues. Being able to understand, strategize, and manage my condition has greatly improved my confidence and quality of life, even if it did strain my bank account considerably.

hi guys and gals,

i'm also interested in this comorbidity issue. i was suspected of having temporal lobe epilepsy when i was younger, but have recently been diagnosed with asperger's.

my question is, would a diagnosis of temporal lobe epilepsy mean that my diagnosis of asperger's is incorrect? there seems to be some correlation though.

i have a feeling that the doctor saying that i had temporal lobe epilepsy may have been wrong as apparently i had big arse tantrums when shopping or other sensory overload situations... maybe he didn't consider asperger's (it would have been early 80's)

i don't know... will take it up with the psychologist...

I went through something similar. Since I'm in my 40s, I grew up as psychiatry and neurology in the U.S. matured, and AS and ASDs became better understood. So I went from possible schizophrenic to TLE to Asperger's with seizures and sensory issues. At this point I'm less interested in the label than the treatment and management protocols. What helps me live more comfortably is good regardless of its name.

I'll be interested to hear what your psychologist comes up with, tonka. My last psychologist was too uninformed to be useful (she struggled to remember my name, and had no recall from session to session of what we talked about).

turns out the diagnosis of temporal lobe epilepsy was a misdiagnosis. i was treated with medication with no difference and then seen by a more senior neurologist who then confirmed TLE was not the problem.

so i guess this confirms my diagnosis of asperger's

Not sure if that's good or bad news or what, but at least you have an explanation. Hope it proves useful.

it seems, to my mind, mature folks with a longer track-record of living with AS/ASD and associative disorders have got a lot to give, aoi.
it's a real shame, we rarely find publications/books on mature, older Aspie adults, who did or didn't have early interventions.

At least we have forums like this one.

That is true, aoi though I was quite horrified to see sexually orientated, dudes' thread titles in Adult section. does that "Adult" mean, XXX? didn't read what they were discussing but I didn't feel safe there lol

wish there's a Mature, "Grown-ups" section. a lot of things which had been said on publications, we have known and have done (but some of mature folks learned to adjust so that we can live?) Certainly, I'm not doing a lot of things I used to do as a toddler!

Kids-centered world in ASD. (I bought a few books on ASD/AS of late, some books were for kids and parents though the description suggested otherwise...)

anyway, my perception on this site may well change as I get used to it, but overall, more need to be said on folks who are no longer 23 and wisdom these folks can provide (you know longer you have lived in NT world, you are bound to have more insight and experience generally..)

thanks for listening, folks..

Yes, my daughter ~ undiagnosed AS ~ has Cortical Dysplasia. She started having simple partial focal seizures at the age of 2. She takes Tegretol and the seizures are well controlled. There is a small lesion on her Perital Lobe that causes the seizures. She is now 11 and the seizures haven't changed at all and still only occur 2- 3 times a year on average. AS runs in my husband's family ~ my husband, his father, 3 of his 4 brothers, 2 nephews, one niece and my daughter ~ in my opinion all suffer. They are all very high functioning, with very high IQs just poor social skills, little eye contact. I've done a lot of research on my own and I feel there is a strong relationship between AS/Autism and seizures. But that is simply one mother's opinion.

I have Asperger's, Add and Epilepsy although I have not had a seizure in over ten years. My epilepsy started at age 8 because of a drunk school bus driver, went into a coma, came out and suffered many seizures, some days long.