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Old 12-09-2002, 12:30 PM   #1
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Location: kearns,ut,usa
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twidmeier HB User
Post seizure disorder/any advice?

hello, i'm new to this board thing, but i have found alot of info i might use to help my seizures. i do not have epilepsy. but i do have seizures that started about a year ago. my team of docs-that i like to call them-say that i have some kind of disorder with to much gray matter in my brain thats taking over the white matter. they say this happened either by a tramatic head injury at birth(which i dont buy) or a blow to the head at some point in my life. no one in my family seems to know how this happened. i am 29 years old. i have never even had a partial seizure growing up. one day last year i woke up to get ready for work, i was in the bathroom brushing my hair, i felt like i was going to pass out-like i had been out in the sun too long. everything started to go black, i heard myself screaming really loud and i closed my eyes and covered my ears. i woke up about on hour later in my bed. i had no idea what happened. i apparently hit my head on the bathtub and hurt my neck, bit my tongue severely, and i was scared. i couldnt remember what happened, what time i was supposed to be to work or anything. that was my 1st grand mal. i still dont remember what happened that day. since then i have had numerous seizures of all types. i have almost a constant ringing in my left ear, i cant drive in the snow, certain lights & sounds set them off, but not untill recently. i had a really screwy neurologist to start with and i didnt trust him on my meds so i changed docs. i have a good one now. i am on 1500 mg of keppra and 400 mg of dilatin a day. the neurologist i have now says the gray matter is too big to operate on, they are the hardest type of disorder to treat, and i do have the seizures in my sleep. which makes me scared sometimes to go to sleep. my seizures involve twitching, making weird sounds, i stop breathing and lose consitnous almost every time. it scares me to death, there is no warning. i have a 5 year old son who is scared, he has witnessed them. i have a whole list of other problems, like emphysema, heart valve conditions, and my team of docs give me about 6 years to live if i make it that long. i suffer from severe depression and anxiety. i cant work, i cant concentrate on anything, all i do is cry anymore. and to top it all off i am pregnant for the 5th time. i have had 3 miscarrages in the past. i cant understand why all of a sudden-a year ago- that i find out i have all of these things at once. i cant understand why i'm still here. my husband tries to be supportive, but i know he's scared too. my pregnancy makes the seizures worse and more often, i went to maybe one partial every 3 weeks, to about 2 daily. if i get overtired or try to do to much,watch to much tv, anything-here they come. if there is anybody out there who could give me some advice on how to help control these things, it would be greatly appriated. my neurologist came out and told me that there was nothing i could do for them and i would just have to live with them, but its making me crazy just trying to live with them. with all my problems with docs- i dont trust them anymore on anything, especially meds. help me if you can. thank you, twidmeier

 
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Old 12-09-2002, 08:46 PM   #2
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Join Date: Sep 2002
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lazoo HB User
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Just want to say welcome and that I am praying for you. Have you tried an epileptologist? Please don't give up hope. I believe in the power of prayer and the body's ability to heal itself.

 
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