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ClosetAspy
Deinonychus
Deinonychus


Joined: Jan 17, 2008
Age: 57
Posts: 384

PostPosted: Tue May 26, 2009 9:03 pm    Post subject: Reply with quote

I used to have temporal lobe seizures until about 10 years ago. No one could figure out why they started. The doctor I have now said that sometimes they go away at menopause, which seems to be the case here.

There does seem to be a connection between AS and seizures. I am not sure why that is, and it might be something for me to look up on-line when I haven't anything else to do. When I was first diagnosed with epilepsy there wasn't much known. I remember telling my neurologist that I had the ability to control my seizures when I felt one coming on and he said very curtly that was not possible. Later another neurologist said that there had been some research into using biofeedback which seemed to indicate it might work in some people. From what I understand, epilepsy is a very complex condition and there are different kinds and different causes. It is just like AS, there is a lot of research going on, but it does not always filter down to the local doctor's office or clinic.

Not only that but my experience has been that many doctors and clinics are understaffed and overworked, and if you don't have the means to pay and the determination to fight the insurance companies, you are not going to get quality care. Especially if you have an on-going condition that is poorly understood. So you have to educate yourself which takes work.
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Hokua_oe
Emu Egg
Emu Egg


Joined: May 28, 2009
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PostPosted: Thu May 28, 2009 2:31 pm    Post subject: Aspergers Reply with quote

I was told by my son's psychiatrist who said he had Asperger's and that she thought I did too that she thought I was having pitmal or frontal lobe seizures too, when I described some blackouts I was having.

Sometimes, "The room goes black as I am walking through a room. A tingling sensation shoots through my ear and it is like somebody hit the down volume button on the entire house. The entire left or right side of my face goes numb depending on which side of my face the hearing went out on. Their will be a sensation of what feels like a hot rod (not painful just hot) being pushed from the front to the back of my head. (not fun at all.)"

Other times, "The hearing will go down in my ears and I'll start shaking uncontrolably in my arms and hands. If I am suppose to be talking to someone, I will start stuttering and stammering as I fight for control. (probably not a great idea, but I like to be in control). My head will ocassionally twitch." If I was talking to someone I usually politely excuse myself.

Usually I am very upset or scared at the time of these events or just under a lot of stress. I have friends now tryingto help relieve my stress, and and all natural diet along with catuaba bark seems to help. They said even my temperment has changed for the better, but they say I'm like a teenager with a high set of moral values. I hate noise and crowds. They scare me.
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Hokua_oe
Emu Egg
Emu Egg


Joined: May 28, 2009
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PostPosted: Thu May 28, 2009 2:43 pm    Post subject: Some helpful information Reply with quote

Careers to avoid – suggestions
Careers that rely on short term memory should be avoided. e.g.:
Cashier
Waitress
Taxi dispatcher
Air traffic controller
Receptionist

Career Suggestions for Visual Thinkers:

Computer programming
Drafting
Commercial art
Photography
Equipment design
Mechanic
Appliance repair
Handcraft artisan
Webpage designer
Video game designer
Building maintenance
Building trades

Career Suggestions for Mathematicians or Musicians:

Accounting
Computer programming
Engineering
Journalist, copy editor
Taxi driver
Piano (or other musical instrument) tuner
Filing positions
Statistician
Physician
Mathematician
Bank teller
Telemarketing

Here is a place with some good information for people with Asperger's:
aspergerfoundation dot org dot uk


They have info for:

An introduction to Asperger’s Syndrome
The Effects of Living with Asperger’s Syndrome
Issues for Partners of Asperger’s Syndrome Adults Responsibility
Further Education and Colleges
Employment
Career Ideas
Sensory Issues
Depression or Mental Health Problems
Diagnosis of Asperger’s Syndrome
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desdemona
Blue Jay
Blue Jay


Joined: May 27, 2009
Posts: 79

PostPosted: Thu May 28, 2009 11:38 pm    Post subject: Reply with quote

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
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Featherways
Snowy Owl
Snowy Owl


Joined: Nov 06, 2005
Posts: 151

PostPosted: Sat May 30, 2009 9:46 am    Post subject: Reply with quote

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.
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desdemona
Blue Jay
Blue Jay


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Posts: 79

PostPosted: Sat May 30, 2009 2:32 pm    Post subject: Reply with quote

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

--des
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OregonBecky
Phoenix
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Age: 60
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PostPosted: Sat May 30, 2009 2:40 pm    Post subject: Reply with quote

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.
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Rordiway
Tufted Titmouse
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Joined: Apr 13, 2009
Age: 38
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PostPosted: Sat May 30, 2009 3:10 pm    Post subject: Reply with quote

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.
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Hovis
Phoenix
Phoenix


Joined: Jul 10, 2006
Age: 40
Posts: 1016
Location: Lincolnshire, England

PostPosted: Tue Jun 09, 2009 5:29 pm    Post subject: Reply with quote

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.
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Aoi
Phoenix
Phoenix


Joined: Jul 17, 2009
Posts: 683

PostPosted: Sat Jul 18, 2009 12:46 am    Post subject: Reply with quote

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.
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tonka
Snowy Owl
Snowy Owl


Joined: Jul 22, 2009
Posts: 165
Location: Brisvegas, Australia

PostPosted: Wed Jul 22, 2009 3:55 am    Post subject: Reply with quote

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...
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Aoi
Phoenix
Phoenix


Joined: Jul 17, 2009
Posts: 683

PostPosted: Thu Jul 23, 2009 1:08 pm    Post subject: Reply with quote

tonka wrote:
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 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).
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tonka
Snowy Owl
Snowy Owl


Joined: Jul 22, 2009
Posts: 165
Location: Brisvegas, Australia

PostPosted: Sat Jul 25, 2009 6:40 am    Post subject: Reply with quote

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
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Aoi
Phoenix
Phoenix


Joined: Jul 17, 2009
Posts: 683

PostPosted: Sat Jul 25, 2009 9:32 pm    Post subject: Reply with quote

tonka wrote:
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.
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flyingladybird
Hummingbird
Hummingbird


Joined: Jul 10, 2009
Posts: 21

PostPosted: Sat Aug 01, 2009 10:14 am    Post subject: Reply with quote

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.
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