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Ive never come to terms with my epilepsy
Tue, 07/31/2012 - 18:32Firstly, thanks for taking time to read.
Im 21 and ive been diagnosed since i was 8 years old. You would have thought that i would have been able to come to terms with it by now but i havent.
What im struggling with most is the not being able to drive. People dont understand how much it means to me and its so out of control its scaring me. My epilepsy has pretty much ruled my life, and has sent me into countless depressions, and ive lost a lot of friends over it. Ive been on every type of medication in the UK thats available to epileptics and none of them have worked. Ive been considered for surgery but i had scans and they couldnt determine where in my brain my epilepsy starts so they couldnt operate. This upset me even more.
I have grand mal and absent seizures and ive recently started randomly twitching everywhere all the time and its scaring me. Im on Sodium Valproate (epilim) and Lamotrigine and im taking 10 tablets a day and its still crazy. I dont know what to do :( It upsets me alot. I often get confused and sometimes i know what i want to say but i cant seem to put a sentence together and talk or the word will be there but my mind cant process it to come out which frustrates me.
My physician says that my epilepsy is rare in the sense that most people who are diagnosed so early grow out of it and that they havent been able to achieve full control in 13 years.
Please, if anyone can share any tips on coming to terms and dealing with epilepsy id be so grateful.
Many Thanks
Codie
Comments
Re: Ive never come to terms with my epilepsy
Submitted by wmgmather on Wed, 2012-08-01 - 12:32
Hi Codie-
I was diagnosed at 18 months old. I've been on every med possible as well. I started on the celiac diet since that seems to help the seizures. It does seem to help for me.
Your twitching might be do to the valproate meds or even the lamictal. The generics that you are taking might heve a side effect as well. For some, taking the generic rather than the name brand, might have greater side effects.
I have the same side effects as you. Twitching, sentence completion, and after a seizure confusion. those side effects seem to be due to the valproate or it could be due to both meds being together. I'm on Depakote ER, lamictal and klonipin.
I just had the new VNS put in and my seizures seem to be better but the side effects are what bother me now.
Hi Codie-
I was diagnosed at 18 months old. I've been on every med possible as well. I started on the celiac diet since that seems to help the seizures. It does seem to help for me.
Your twitching might be do to the valproate meds or even the lamictal. The generics that you are taking might heve a side effect as well. For some, taking the generic rather than the name brand, might have greater side effects.
I have the same side effects as you. Twitching, sentence completion, and after a seizure confusion. those side effects seem to be due to the valproate or it could be due to both meds being together. I'm on Depakote ER, lamictal and klonipin.
I just had the new VNS put in and my seizures seem to be better but the side effects are what bother me now.
.
Submitted by ryansdad on Thu, 2012-08-02 - 09:09
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