Hi, I'm new here - having seizures a bit more frequently & am really struggling, it's all I can think about. I tell myself to stop thinking about it - but that is still thinking about it! If I wake up in the night I get in a panic & have to get up to go distract myself. I'll tell you a bit about my epilepsy - some of you may have similar cases. I had a giant grand mal seizure in one side of my body when I was 6, the docs had to knock me out with Valium to stop it. I was in hospital for a week whilst they did a load of tests but found nothing, it was recorded as a "mystery brain virus" and that was that for 10 years, out of site out of mind. Epilepsy came to me as a big surprise when I was 16, I had a few grand mal's & had various scans but nothing was found. I was put on lamotrogine for a year & told it might get everything back where it should & sort it out. Well I was clear for 50 weeks, then the focal seizures began. I've had them frequently for 10 years, I'm still taking lamotrogine, I've tried Keppra but it gave me anxiety & panic attacks, making the seizures worse. Zonisimide which made no difference & currently take locosamide, I have done for at least 4 years but I still have them, and have began to have a few bigger ones now where my knees go & I fall to the floor & twitch. News to me - I don't know what's happening, I can get this kind of sense one is going to happen - I can be disorientated afterwards & do strange things, or can behave perfectly for hours then wake up, find myself somewhere doing something - take a deep breath & carry on.
There has always been a theory that the massive seizure I had when I was 7 could have left a tiny scar on my brain somewhere that gives me epilepsy. The idea has been that if it could be located then I could have brain surgery to remove it & hopefully stop the seizures. I'm from the UK & have spent weeks in hospitals over the years having scans without success (it's hard to have a seizure on command!) Scanning equipment is supposedly better in Belgium so i was sent over there for another scan but no luck. The docs in Belgium told me to come & have another go in a few years as technology is always advancing & I could be successful next time.
I try to remain positive & not let it control my life but it sure can be challenging - I've had a focal seizure holding a hairdryer against my skin a couple of times & burnt myself quite badly, many of you will know biting your tongue unaware is severely painful! I don't know anyone else with epilepsy, it would be great to speak with some of you who understand what I'm going through.
There has always been a theory that the massive seizure I had when I was 7 could have left a tiny scar on my brain somewhere that gives me epilepsy. The idea has been that if it could be located then I could have brain surgery to remove it & hopefully stop the seizures. I'm from the UK & have spent weeks in hospitals over the years having scans without success (it's hard to have a seizure on command!) Scanning equipment is supposedly better in Belgium so i was sent over there for another scan but no luck. The docs in Belgium told me to come & have another go in a few years as technology is always advancing & I could be successful next time.
I try to remain positive & not let it control my life but it sure can be challenging - I've had a focal seizure holding a hairdryer against my skin a couple of times & burnt myself quite badly, many of you will know biting your tongue unaware is severely painful! I don't know anyone else with epilepsy, it would be great to speak with some of you who understand what I'm going through.
