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Trying to find someone like me
Tue, 11/12/2013 - 05:24Hi, my name's Patrícia Santos. I'm 18, I'm portuguese and I have epilepsy ever since I can remember. The problem is that my kind of epilepsy is very weird and my doctors don't know what to do with me.
I haven't had any seizures for quite some time. I take Keppra and it has really helped me, so the seizures are not a real problem for me now.
The issue is that I have what my doctors say are paresthesias and they stop me from having a normal life. I always have this weird feeling in my right leg and because of it I can't sit still. There are times in the month when they are worse and I have spasms and I feel constantly that I'm on the verge of a seizure even though nothing really happens. i have to walk all the time back and forward in my house because if I go outside I feel worse.
Right know I should be in college but instead I'm home because I can't sit in a classroom without feeling like I'm about to have a seizure and my spasms keep me from paying atention to what the teachers are saying,
What I want is to figure out if there's someone out there with my kind of symptoms, because I have never met someone like me. It would help me feel less alone.
Thanks
Re: Trying to find someone like me
Submitted by mereloaded on Tue, 2013-11-12 - 13:45
Those could be evidence of seizure activity that does not develop into a full blown seizure., people that are on anti convulsants can feel the sign of a pending seizure but then they go away, that just shows that the medication IS working. There. Is a video on YouTube about this female weight lifting champion that describes her life with epilepsy and she explains that she does not have seizures anymore because of her medication, and that all she can feel is a strange tingling in one arm, but then it goes away and that is it. Another thing that comes to mind, those could be anxiety attacks or it could also be add. When the fidgeting and urge to move I refers with learning, it is suppose to be Attention deficit hyper activity disorder or ADHD. You can potentially have both epilepsy and ADHD. Another possibility, there is such thing as restless leg syndrome, perhaps you can google it. My son has recently been diagnose with epilepsy at age 15. He has always been fidgety at school since I can remember. Teachers always complained that he could not sit still in the classroom. They tested him several times for ADHD, add and all the repeated test came back negative. Years later then he gets a seizure. It explained why he could not sit still in school. Even today, when he sits in the classroom, dining room etc. he moves his right leg (as if he is in a hurry to go somewhere). When I ask him to stop he stops, so it is not like he is having a focal motor seizure.