looking for advice

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New Member

Date Joined Feb 2005
Total Posts : 5
   Posted 2/2/2005 11:58 AM (GMT -6)   

I'm just starting to delve into the disorder I've had for the past eight years. I feel incredibly irresponsible because I’m reading what you all have to say, and you seem to know such much, what form of epilepsy you have, what types of seizures you get, and I know nothing. How can I hope to get better if I don’t what I’m being treated for? But at least I realize this now and, well, I’m learning. I was hoping someone might has some advice for me.

I’m 24 and had my first seizure (grand-mal) the night before my sixteenth birthday. The first year they weren’t sure if my seizures needed meds, but then they put me on Depakote, which I’ve been on for the past eight years. My seizures stayed pretty steady for the next six years, about 2 or 3 a year, all grand-mal, nocturnal and never any warning. My neurologist keep increasing the dosage to it’s current level of 2000 mg ER. Finally, almost exactly two years ago, I had intense cluster seizures that put me in the ICU. After that I went on Keppra, 1000 mg, and that really seemed to help. I was seizure free until right before Christmas. I had a grand-mal one night right before I was going to go shopping. In the car of all places!! So much for my hard won license and thank god I wasn’t driving! Then, Christmas Eve was spent in the ER because I was having what my Mom thought were absence seizures all day. However I retained consciousness and my arm would jerk throughout. My Keppra dosage was upped to 1500 mg and ever since I’ve been extremely anxious and moody.  I don't know if I should change doctors, meds, or what?  I’d really appreciate any and all advice.

Veteran Member

Date Joined Jul 2003
Total Posts : 585
   Posted 2/2/2005 12:36 PM (GMT -6)   
I am so sorry you have not found good control! Sometimes getting a second opinion can help. Fresh eyes on the case, as it were.

Do not worry about not knowing much about the disorder. We each start out that way. I have been on the net learning about it for 3.5 years. Took me 3 years just to find info(I was NOT into computers before then, at all) It was hard to find good books in libraries or book stores. Most that I find now are on line.

Hang in there. Keep learning!! www.epilepsy.com is a good place to learn more about seizures. Also there is a resource list here for more sites.....

Regular Member

Date Joined Sep 2004
Total Posts : 24
   Posted 2/2/2005 3:48 PM (GMT -6)   
Have you had any more current test ran like a EEG?
This could tell them if you are still having some seizure activity of course it does now show up on everyone.
What about a MRI or a Cat Scan?
Our son is the one with seizures but hes suppose to have a EEG atleast one time a year unless hes having some problems same thing with the MRI.
His did show his seizure activity and it pin pointed it to what kind of epilepsy he has his was frontal lobe epilepsy. We just started all this over last summer with his first seizure. The teen years seem to trigger alot in kids.

Regular Member

Date Joined Sep 2004
Total Posts : 38
   Posted 2/2/2005 5:30 PM (GMT -6)   
A second or perhaps a third opinion may point you in a direction that you have not thought of yet.

Regular Member

Date Joined Nov 2004
Total Posts : 163
   Posted 2/2/2005 5:41 PM (GMT -6)   
I have had seizures since 1997. My Neuro. has sent me to a EPI Clinic. They are running test on me so I guess It is a second opinion I should of got A while back. Second opinions never hurt. Good Luck! Mary
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