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Old 10-11-2008, 10:26 AM
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Wiix Wiix is offline
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Join Date: Apr 2007
Location: The "X" is silent. Pronounced "Oui".
Posts: 3,578
15 yr Member
Wiix Wiix is offline
Grand Magnate
Wiix's Avatar
 
Join Date: Apr 2007
Location: The "X" is silent. Pronounced "Oui".
Posts: 3,578
15 yr Member
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Quote:
Originally Posted by WordsnNumbers View Post
Hello! I just joined now after finding this forum when googling Gerschwin's Syndrome.

I found out, after a lifetime of having weird spells, that I have Temporal Lobe Epilepsy (left-side) very recently, like a year or so. I'm not taking medication since I haven't had one for a long time, but I've had them since I was a very, very young child. Except for the hyper-religiosity, I've got every single personality marker as well. Lousy memory, olfactory hallucinations and a very precise and vivid sense of smell, lefthandedness, synaesthesia (scent/taste/color), enhanced abilities with mathematics and numbers, enhanced creative abilities, hypergraphia, the works. (I'm a bit weird in all senses, though -- I've been tested at 0.375 Hz tonal discrimination as well and have to plug up my ears to sleep, and while I'm nearsighted, I can color-match to an almost creepy degree.)

It's reassuring to find out that there might be other people out there with it, but I've never met any in person, and I'm worried about trying to since publicly claiming the Big-E word freaks people out. I was terrified when I started realizing that I needed to be evaluated for it that I would be legally forced to be medicated or lose my driver's license, and that the medication would make me lose the abilities I have that seem to be related to TLE. (I became functionally literate in Welsh in about three months and have always been able to learn languages and math like drinking water, effortlessly.) I was scared out of my mind that I'd have to choose between that and working for a living, and it effed me up for a few months before I finally decided I had to get evaluated. Like I said, employers and doctors freak out when they hear the E-word, and I was scared even to mention it for fear I'd lose my rights. This is on the borderline of a "mental illness" in a lot of people's eyes, and mental patients often lose a lot of rights and privileges.

The story of how I realized I had it is its own tale, but for the moment, I think I'd just like to connect with other people who have it and learn a bit about you. This looks lots better than the last epilepsy forum I found which was run by a guy who didn't have it but whose kid had it, and while I admire parents with special needs kids, they can be incredibly condescending when they try to adopt the "because I'm daddy and I say so, honey" tone of voice with total strangers. I'd really like to hear from people who HAVE it, and not people who have kids who have it. I want to talk to others like myself.

Anyone else out there?
Yea, me. You sound JUST like me. The hypergraphia thing usually just happens after some sort of trauma, mental or physical.

I chose NOT to be medicated since I found the side effects of the meds were worse than what they were supposed to control.

I have just learned to live with it all. Afterall, I wasn't diagnosed until I was 50 and worked around my problems all my life.

One of the meds, I can't recall the name of, sounds like Neurontin, was the worst. I had 3 friends who all took this med and are now dead. Way before their time IMO.

I don't think doctors really KNOW what they are doing. They throw all these drugs at you in sort of a shotgun approach and IF there is some improvement somewhere, well, you just lucked out, but I really have no confidence in the medical Mills. I'd rather just be drug free and be the way God made me, problems and all. I tried the doctors ways and found it extremely debilitating. I am better off without them.
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