Hi there, I have the TLE too. I have it from a traumatic blow to the head. It's scarring on the lobes.My doc's can't trace back how it started, so I was diagnosed idiopathic. My sense for scent, and sound has increased a good amount. But because of my meds my balance is screwed up a little. What greatly reduced the amount of seizures is the right temporal lobectomy. But I still have them because I have scarring on the left temporal lobe too. after the staring spell, I go into total confusion, and half the time during the confusion I'll hallucinate. I asked my doctor why is that, and he said. "that because if the length of time for the electrical activity takes longer than normal to get back to normal. It can cause bad confusion that leads into hallucination. So don't worry you're not a mental case." If a employer refuses to accept you because of seizures, or lays you off because of them. You can take them to court with the Americans with Disabilities Act (ADA). The National Epilepsy Foundation will help you with ALL the legal issues. So where are you at? I'm in Pasadena, California. If you ever need a person to talk to on the phone that has TLE, just let me know, I'll give you a call and some support.
You're right people are sensative to the word Epilepsy. I've been trying to find a girlfriend for the past 18 years. But when I bring up the seizures, I just get rejected immediately. So I'm 40, and have yet to have a wife and child. My seizures started up with deja vu the simple partial, and then went to petit mal. Now I have complex partial, and starting in 2006 grand mal.
Sincerely
Shawn
Quote:
Originally Posted by WordsnNumbers
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?
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