Hello, I sympathize/empathize with everything you say here. But, I must say that the seizures are the least of my worries. I have been an odd ball since I was very young, and lost in my own world of hallucinations, that "Alice in Wonderland" thing they speak of, an excess of creativity. It's no fun. It's gotten worse for me over time and now I do take meds... Lamictal. I haven't been able to work for a few years ... too much stimuli of light/sounds and people-chaos make me seize.
It's more of a lifestyle problem for me. Feeling like a freak of nature, knowing that, as you say, it's only a slight touch away from madness in the psychiatric sense. My world has become closed off, lonely and unproductive. I make prayer beads now. Lots of quiet. Contacts over the internet, walking my dog, not supposed to drive until after 6 months with no seizure which hasn't happened yet.
I need to know I am not alone. It's good to read what other TLE people have to say. Cynthia in Massachusetts
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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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