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Where is everyone ??

Posted by on Jun. 29, 2007 at 11:31 AM
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Hey there :o)  Just wondering where everyone was...I haven't seen a post on here in quite some time.
I'm in New York right now on vacation, my husband works here....anyway this is a three hour time difference from my home and I keep forgetting to take my meds and when I do it's a totally different time than I do at home, so anyway I have had this freaky headache that won't go away...bummer.
Hope you all are doing good and hope to talk soon !!
by on Jun. 29, 2007 at 11:31 AM
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jordunmom
by on Jun. 30, 2007 at 12:39 AM
Hi Kym

I'm new to this group.  I  saw your post and wanted to reply, because I look at our group posts daily, and notice also that there isn't a lot of activity. 
I've wanted to post;  but saying  "Hi, my name is Cathy, and I have epilepsy" sounds as though I'm at an AA meeting......it's still hard for me to say, even after dealing with it for 25 years............my first seizure was at 16, I"m now 42 years young.
I have been married to my best friend for almost 15 years, and we have two wonderful (okay, they can be brats) children.
I went over 8 years without having a seizure, than I messed around for a week, being lazy with my meds, and BAM, my 5 year old son (4 at the time) said "Momma, I thought someone shot you"..............I'm SOOOOOO sad that he had to witness that.  I've been seizure free for 14 months now.
I hope everyone in our group is healthy and seizure free!!!
Cathy
kymbernv
by on Jun. 30, 2007 at 10:01 AM
Hi there, nice to meet ya  :o) 

I had my first grand mal when I was 15...I'm 38 years young  :o)  now, but I wasn't diagnosed until I was 23. I haven't had a grand mal for eight years now, have had some smaller ones, but haven't been sent to the hospital, so that's a good thing. I take carbemazepine and although I don't like the side effects it stops the grand mals, so for now I'm stuck. What do you take? And how are the side effects?

~~~Hugs to everyone~~~

Kymber

jordunmom
by on Jun. 30, 2007 at 1:12 PM
I'm on one of the older medications ( if it ain't broken, don't fix it )...it's called MYSOLINE ( I take the generic PRIMIDONE)  250 mg. twice a day.
I have absolutely NO side effects with it. 

After my first grand mal at age 16, they put me on DYLANTIN....OMG, I had the most bizarre reaction to that.  Everywhere in your body where there is a skin crack.....at a finger joint, the bend of your arm, the back of your knee....etc....my skin cracked open and bled.  I became so dry and wrinkled, I looked like I was 50, at age 16.  My hair fell out.  My friends were convinced I had cancer and was going through chemo treatments.

I hate having this "condition".  I hate to sound like a whiner, but damn!!  it sucks.  I never have a clue as to if one is coming on or not.  My doctor has discussed "auras" with me; some people actually know when they are going to have a seizure, and they can take safety procautions. 

I'm praying for another 8+ seizure free years.

God bless you
kymbernv
by on Jun. 30, 2007 at 1:27 PM
Oh my gosh.....I remember Dilantin. When I had my first in high school, they put me on that plus phenobarbital. I would go to school and fall asleep sitting up..yikes. I felt like I was drugged up ALL the time. Then they wouldn't let me take p.e. because they said running cause seizures (can ya tell this was back in the day..lol) In Nevada, without your p.e. credits you can't graduate...isn't that nice? Anyway, I know what ya mean about sounding like a whiner, I don't like to either but sometimes it helps :o)
I'll pray in agreement with ya on another 8 years free of seizures !!
Kymber

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