My name is Susan and my mother was born with epilepsy. I am currently 14 years old and she died when I was five.
My mother had epilepsy her whole life. Ever since birth. (they think that the doctor squeezed her head to hard) She died while having a seizure. She swallowed some saliva and she choked. No one was home. (except my brother who was 3) Can anyone share their stories with me? Please?

Susan

Oh Susan, I'm so sorry to hear about your mom. That is not typical of most people with epilepsy, and a real tragedy. Most of us live fairly normal lifespans, and even though a lot of us go through tough times, or have seizures that are hard to control, there are new treatments all the time- many more than even 20 years ago when I was officially diagnosed (had the seizures, just nobody believed me until I found a doctor who did the right tests). I've taken care of people in their 80s with siezures, and babies who are less than a month old.

When people are having seizures like the kind your mom probably had (grand mal/generalized), she didn't suffer- she didn't know what was going on when she was having the seizure. Do you worry about that?

If you have more specific questions, it's ok to ask them. Just let us know here what you need, and someone around here is bound to have a response- it's a good board. Glad you found it :)