New to HW...54 with Epilepsy

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New Member

Date Joined Jun 2006
Total Posts : 2
   Posted 6/11/2006 11:59 AM (GMT -6)   
Hello all of you,
   My name is Patti and I'm 54 years old.  I was diagnosed with epilepsy as a small child.  At first it was diagnosed as petit mal epilepsy and my parents were told that I would eventually grow out of it,  needless to say that diagnosis was wrong.  Now I have sleep seizures, convulsive seizures and absence seizures.  I have recently been told that I have intractable epilepsyand that I am not a candidate for the vagus nerve stimulator or surgery because so much of my brain is involved in my epilepsy.  What I would like to ask is if your doctors listen to you when you tell them you are experiencing weird side-effects?  I have been telling my doctors for about 15 yrs. that my feet were going numb and tingling, none of them ever suggested that this was a side effect of the Dilantin I have been on for 37 yrs.  I had never heard of that until I started reading some of these posts.  I have been on 8 different medications in the last ten years and none of them has stopped my seizures.  about 15 years ago I was told that for the Dilantin to work, I was going to have to maintain a blood-level in the toxic range, at least a 22 level.  Now I am staying at 25,but I am really having a hard time with memory, walking, and mood swings.  Still I am only having one or two convulsions a week now and the absence seizures are down to four or five a day.  Just knowing that there is a group that understands some of what I feel is great.  Patti_S 
By the way, where is the profile section?
***Edited to add title***

Post Edited By Moderator (~Jennifer~) : 6/11/2006 1:44:40 PM (GMT-6)

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