NeuroTalk Support Groups - View Single Post - Temporal Lobe Epilepsy -- anyone else here?

shawn33 · 03-27-2009, 06:48 PM

Hi there,
I have TLE too. I have it on both ends, so it's basically tossed my memory into the toilet and it's as if my mom or a friend has flushed it. Up until 1998 i was prescribed EVERY med that was out on the market for E. But since that and the right temporal lobectomy, and the VNS didn't stop my seizures. My neuro told me that I have SEVERE epilepsy. They don't know if I was born with it, or if I got it from being in Desert Storm. I'm a Marine war vet. After the right temporal lobectomy, in the early 90's, i got the VNS in 95. For 11 years that didn't do anything for me. Than in 2006 i entered the RNS medical research study. that's helping me moderately well. I'm dying to get the seizures under controll because of the job offer that I got a couple years ago. Here in southern CA. NASA offered me a job to be a security guard at their offices at JPL (Jet Propultion Laboratory). The starting pay is $45,000 per year. But i must have a drivers license. If you ever want to talk about the seizures, the VNS, or the RNS, let me know. We can either do it on the live epilepsy chat at www.epilepsy.com or i can call youif you live any where in the USA, since I have unlimited nation wide calling with AT&T.
Sincerely
shawn33

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?