Hello 'words and numbers' person~ I have TLE also and am of the visual/literary type. My neurologist says both sides are involved with seizure acitivity. I also was diagnosed recently and mis-diagnosed and mis-treated with the wrong meds... for bipolar disorder, which never quite fit.
I'm very interested in meeting others with TLE. My brother also has it but aside from him I only have one friend who can tell me about it second hand. She says her mother had TLE and later in her mother's life she was not able to go anywhere for fear that she would become disoriented and do something crazy like take her clothes off in public, which she did once in church.
I have religious experinces... thought I was a mystic. I also have had out-of-body trips that had me beleiving in the paranormal more than I would ordinarily. I am in my mid 50s. My family is somehwat ashamed of me becasue I quit working as an art therpist and have been on disability for 7 years. Often I am not able to drive and often I don't remember what I say or do for days on end.
It's quite an interesting (for lack of a better word) case of mal-happenstance.
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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