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Outgrowing Epilepsy Falicies???

Mon, 10/16/2006 - 16:15
OK...so most of you probably are on this site because you have ongoing epilepsy. I was diagnosed at 7 yo with petit mal epilepsy. I took phenobarbitol for years and was taken off meds in junior high. I haven' thad seizures since, that i am aware of, however there are times, when i don't remember getting from one place to another, or miss things in meetings at work and have to say, huh? I am going back to the neuologist this thursday because of a tremor in my left hand, that my FP dr thought needed to be checked out. It comes and goes...i always have had a steady tremor in both hands since off pheno. however, my left hand will become quite shaky at any given time...I am a little nervous to go abck after all these years. I know it is needed, and have just kept putting it off...I guess I just fear they tell me I went off my meds to young and it never cleared up, or it reoccurred...anyone in this b oat...that thought they had outgrown it, and then it just mysticaaly started daunting your doorway once again?

Comments

Re: Outgrowing Epilepsy Falicies???

Submitted by GodivaGirl on Mon, 2006-10-16 - 17:57
Yes, I've been there. I was diagnosed at age 5. I was on zarontin & phenobarb until age 12. At age 12 they thought I'd outgrown everything so they took me off my meds. At age 5-10 or so I'd only ever had what they now call "absense seizures". At age 16, I had what I thought was a cold. Turned out it was a wicked virus, and the day I had my first tonic-clonic seizure. I've been on a variety of meds ever since and told that odds are they'll never take me off 'em. I'm now 32, taking Topomax, Keppra & Clobazam (soon to be off Topomax I hope) So, yes I'd say seizures in some form can come back. May not be encouraging, but I can say I've been on & off meds Good Luck with your doctors. Sorry this is short...I can answer any other questions you have as I have time - for now, off to the gym for the 6:30 class, helps with Keppra! Cheers, Erin

Re: Re: Outgrowing Epilepsy Falicies???

Submitted by lkm on Thu, 2006-10-19 - 21:22
I have had epilepsy since 4. I was on phenobarbital and dilantin for years. Then I went to college and I took myself off medication thinking that I was fine. I was fine until late twenties I was experiencing numbness in my back as well as right arm (I had convulsions in my right hand and arm when growing up). Then after I had my first child at 32, I started experiencing extreme weakness again in my right arm. Went to the doctor, had MRI, EEG - and my doctor put me back on Dilantin which I still take. She told me that I will probably be on medication the rest of my life (am now 38 and have had another child while on dilantin). The good news is that my last convulsion was in 1986. I wanted it out of my life after having to deal with for so long but now I can live with taking medication if it keeps me from having another convulsion. I never want to experience that again.

Re: Outgrowing Epilepsy Falicies???

Submitted by ScottR on Mon, 2007-01-01 - 23:01
Hello lilmac, I had E when i was 18 months old until 4 years old when it went away. they reduced my meds until I was completely off of them. When I turned 17 yrs old they came back and I am now 35 and am still dealing with them. Many times if you develop E as a small child you can outgrow it however often times going thru puberty can triger it to reocur. Good luck with your drs apt. I hope that all goes well. Scott.

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