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Epilepsy questions
Tue, 12/19/2006 - 20:29Hello all,
This side of the building is sort of all new to me, I have been focused on other stuff as you will read and I am looking for advice, thoughts, guidance.
A few years ago I was diagnosed with a brain tumor on my right temporal lobe. It was discovered because I had a gran mal (aka tonic clonic) seizure while out on a run. The tumor was removed with surgery, then radiation and chemo. Due to the "injury," as the medical world calls it, to my brain from the tumor/surgery, I am left with a scar on my brain, which perhaps is the cause of ongoing seizures. I have not had any gran mals since the first one, but it seems like every month to month and half I go through a strong bout of seizure activity, which I am today and yesterday.
The sensations are scary, as I am sure you all know, like I am being sucked into some other world, or like someone hit play on the DVD player and the memories are being activated uncontrolabley, and it all gets me frightened cause they are the strong "auras" that potential come before a gran mal. I've been told I am lucky I get the auras...
I am on 1000mg tegretol twice a day and 500mg keppra twice a day. Took lamictal which made me so anxious, I so now understand clinical depression!
The real reason I am babbling I guess is do you all get the auras and get scared crapless? What are yours like?
I was just in the supermarket about three hours ago and basically had one come on and had to leave the groceries and get to the car for fear of the whole thing. Also, my neurooncologist is finally sending me to a neuroepilepsy specialist to see if he can help = new meds???
Sorry for rambling just trying to start to become an "expert" in this stuff with people who go through this, my brain tumor buddies don't really have this problem and this journey is now seeming to take the lead; I got the brain tumor world down pretty well...
I thought it was neat to learn that the word epilepsy just means repeated seizures. The world makes you think it is akin to lepresy... Cheers and good vibes to you all...
David
Comments
Hello and welcome!!! I have
Submitted by aquila316 on Thu, 2006-12-28 - 14:20
Hello and welcome!!!
I have had E all my life, am 33 years old, and was diagnosed at 13. I currently have simple partial, complex partial, absent, and tonic- clonic sz's (used to be gran mal) and I was just put back on meds after going without for 8 or 9 years due to not having health insurance. I do still get auras without sz's and so far the doctor isn't worried. I was told that if they worsen, then the dr will raise my dosage of Depakote, and we'll take it from there.
I guess the auras are better than the sz's (the last one lasted for 45 minutes).
Hope this helps,
Susan
Re: Re: Epilepsy questions
Submitted by kls on Thu, 2006-12-28 - 13:54
i'm new to the site and it's really nice to hear from people that get what an aura even is. most people look at my like i'm crazy when i try to explain it. i've had gran mal seizures for over 20 years, and have went 2 years now since my last one. i still have auras but no seizure. has anyone else experienced this?