Advice or knowledge

[CaseyLou13]

Does anyone know why I would be having seizures? I've been having them since I was about 10 years old. I have the mono-clonic & granmaw seizures. I was diagnosed with epilepsy when I was 15. I've had an MRI done and quite a few EEG's, blood work, and a cat scan done. And my neurologist has come up with nothing. I was put on keppra for a year. And of course when I went to go have my EEG done for that year check up. It came back clear. So they took me off. They weren't bad for a very long time and then all of a sudden they started happening again and more often and my mono-clonic seizures were gettin worse. Instead of just my eyes and head twitching and what not. My arms would jerk, and if I was standing my knees would always buckle. And I got tired of worrying bout when or if ones gonna happen. Worrying about if I stay up too late am I gonna have one. So I got put back on my medication. I'm 19 years old I've been back on it for about 6 months now. And still no known cause for my seizures, except flashy lights, sleep deprivation. I deal with horrible migraines and if I can't get rid of it, it'll make me have seizures, if I over work my body it'll cause me to have one. Is there anything Yall can tell me about what's wrong with my brain since my doctor doesn't know? And since it seems like to me I'm not gonna grow out of them what could I do to help with my seizures without having to be stuck on medication for the rest of my life.

[Deb179]

Hi Casey...just came to post my own question and saw yours, you may be able to give me some insight too.
Flipper is right...no rhyme or reason.
My daughter too has Myoclonic and Grad mal seizures.  Weve had pretty good success keeping the grand mals controlled but the myoclonic are a different story.
I know each person is different,, what works for one might not work for another.
My daughter was on keppra many years ago...that med intensified her myoclonics.  She was tried on nearly every drug...each new drug tried with her brought on a new seizure type.  We ended up with the last resort being the ketogenic diet.  After the diet she was put on Depakote for maintenance....its proven to be the most effective drug for her.  
Her known triggers for her myoclonics that cluster are fore most illness, followed closely by stressed and also flashing lights.

Anyways...my daughter is 18, but functions near a 2-3 year old level.  She is semi verbal, a lot of swearing, always seems mad/mean.
Ive asked many including her doctors what she feels, before / after a seizure.  She still will have 100s if not 1000s of eye flutters, rolls a day, that we can not seem to control.  Her clusters I can break.
No One can seem to answer that question for me.
I often wondered if it left her with a headache...you mentioned migraines.
Also grand mal
I would really appreciate, having an idea of what she feels

Thank You
Debbie

[flipper336]

Sorry to say that sometimes there is no rhyme or reason why someone will become epileptic. As for your EEG's coming back negative or clear, please do not worry about it to much. Where your seizure activity is located could be deep within your brain and a normal EEG might not pick it up. The best thing for you to do is to avoid anything that you know of that can trigger a seizure and stay on your meds. Also you will also most likely have to stay on some type of seizure medication throughout your life. I know that is not what you wanted to hear but, it is what it is. Try and avoid stress as much as possible because that can also be a trigger for seizures. I wish you luck