Posted by Adam on March 31, 2001, at 22:06:30
In reply to TLE » Elizabeth, posted by Adam on March 31, 2001, at 21:33:02
Hmm. Now that I think about it, I seem to remember something about changes in the brain that could be manifested in other regions besided the temporal lobe. The hippocampus, I think, was a common site of lesion of one form or another (and hence a clear physiologic indicator of already noticible problems with memory that can plague TLE and other epilepsy sufferers), but I think, if I remember correctly, that this was thought to be more an affect than a cause of the epilepsy, and usually became pronounced only after years of frequent and prolonged ictal activity. I want to say mesenchymal-TLE (which would be absurd). Maybe meso-TLE? I think, as I said, extended periods (on the order of years or decades) of uncontrolled or poorly controlled seizures certainly could be a cause of changes in brain morphology. But do you think you may have been suffering from seizures for a long time? I seem to remember you mentioning once something about anxiety attacks that had precursor auras. Now I have to wonder...
> I dated someone for years who had TLE. She never had an experience like that. I was present during a number her episodes, but never witness what I would normally think of as a clonic attack (she suffered from both simple and complex partial seizures). She HAD had a pair of grand mal seizures in her early teens, but this was due to the growth of a benign glioma, which was removed. The scarring from that operation was the likely source of the delayed sequelae. At any rate, she was diagnosed and treated (with carbamazapine + clonazapam, plus some psychotherapy, FWIWW) at around age 20, and suffered far fewer problems on the medications.
>
> As I said, her seizures bore little or no resemblance to what you have described. They were frightening, to be sure, but rarely lasted for more than a few minutes, and most certainly did not leave her in need of a respirator or anything of the sort. The most common symptoms were feelings of intense dread, a sense of a malevolent presence in the room or nearby, sometimes odd or acrid smells, auras, and, if the episode was particularly serious, a kind of catatonia. Her head would loll a little, and she would stare vacantly, maybe moving her tongue and mouth in a strange manner...but it always passed quickly, and fortunately, without any clear lasting effect. At night, while asleep, she would sometimes make violent movements and repeatedly gnash her teeth together in a way that was clearly audible, but whether or not this was just normal nocturnal myoclonus or related to her illness I do not know.
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> We both read a lot about TLE. Whatever happened to you, it sure doesn't sound like TLE to me. And besides, if the abnormality is most pronounced in the region of the thalamus, why are they talking about the temporal lobe?
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> I think complex seizures are, well, complex, and so is the diagnosis. I do not want to cast doubt on your physicians, but I hope you get a second oppinion as a matter of principle. I seem to remember my ex was diagnosed by a guy at Beth Israel (?), but it was so long ago I can't remember the name. Perhaps I can look it up a list of MDs and jog my memory.
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> Best of luck.
poster:Adam
thread:58035
URL: http://www.dr-bob.org/babble/20010327/msgs/58251.html