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Old 06-07-2011, 07:06 PM
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new seizure type!


i'm not sure if i posted about this already, but i don't think i did. my dr discovered that the overheating episodes i have that cause seizures, are seizures in and of themselves. she increased my depakote and, within two weeks, they decreased from everyday to once in one week. it was amazing.

it worked for a while, but with the heat right now, i've been having alot more. she said it has something to do with the way my brain deals with temperature. the heat from weather or excercize causes it.
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My brother said to me; "it's not fair, epilepsy and then lupus all in the same year, what else is coming? and why is it happening to you?"
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Old 06-07-2011, 07:28 PM
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That's interesting to hear -- I'm glad the Depakote increase is helping. Can you do things to stay cooler? Maybe carry your own fan? Take lots of showers? There's a kind of scarf thing that you can soak in water, wring out, and then put on your neck that works well to keep you cool. I think travel outfitters sell it.
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Old 06-07-2011, 09:37 PM
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I'm so sorry you've been going through that. But Fascinating... the number and types of different seizure triggers amaze me.

Nakamova is right about the Kool Ties. I have one and love it. I got mine a year or two ago at REI, but in person and not online. They work best in dryer climates, but they'll work in humid ones, too.

http://www.rei.com/product/691097/kafkas-kool-tie

Looking this up on REI online for you I just saw that they have headbands, too. Makes me wonder if they would help with headaches??? Or if I could get polymer granules and make my own "headache helmet" type of thing.
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Old 06-08-2011, 03:52 PM
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I'm glad your doc discovered this. and Nakamova said what I would in terms of best efforts to keep cool despite unavoidable hot weather temperatures.
And like Endless say-it never ceases to be amazing just how many seizure types and triggers there are.
As I am in the probable simple partial category, I can attest to ridiculous triggers. I had one last night simply upon laughing. It could be laughing, or like if I make an audible "hmmmph type editorial one line comment", like pfffft when you hear something that you're rolling your eyes up in sarcasm at. Occasional it's a sneeze too that brings it on.
And it's like poof, the olfactory/gustatory aura goes on just like that. But not always-as LOL, I laugh plenty and sneeze plenty!
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Old 06-08-2011, 05:58 PM
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Originally Posted by gr33nr0se View Post:
my dr discovered that the overheating episodes i have that cause seizures, are seizures in and of themselves.
Yay, that you've found the answer and a change in meds has decreased your episodes!

You mentioned before that you were having these episodes, and from a month or so before, I'd started having them too. My doc and I were dealing with something else at the time, but finally got 'round to this one, and he's referred me to a specialist (don't have an appt yet) but I hadn't thought of this being a seizure.

For me, it may also be a reaction to my anti-d, and another doctor confirmed this on Monday. It is listed as a side effect. My overheating episodes were also at their worst when I wasn't eating, and now that I'm back at my "normal" weight (overweight), they've stopped.

Of course, while I wasn't eating, my blood sugars were frequently low, another seizure trigger, so it's still possible these flushes were a seizure for me, too.

Epilepsy is a never-ending learning curve!

Thanks gr33nr0se!
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Old 06-10-2011, 09:00 PM
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i'm glad you guys can relate lol. and i will definitely look into the cooling scarves and stuff my birthday is coming up so i think my parents might get me one
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My brother said to me; "it's not fair, epilepsy and then lupus all in the same year, what else is coming? and why is it happening to you?"
I said, "Everyone has crappy stuff to deal with in their life. The fact that it is all happening to me now, means that I won't have to deal with it later. I'm getting it over with."
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