Ami’s Story

Being a kid with epilepsy is not easy.

I have had epilepsy since 6 months old. Being a kid with epilepsy is not easy. You can’t do other things kids can do. Running even triggered seizures. I missed some school field trips due to seizures. In high school, I was sent home because my pupils were dilated and they thought I was on drugs. I still get comments on my pupils.

I also learned that during my absence ones my pupils will also dilate. I’ve been on a dozen different meds and they mostly just make things worse. I’m on only one medication now cuz it’s hasn’t done anything weird to me but it hasn’t fully controlled them neither.

I also have seizures in my sleep that toss me awake and recently I went through clusters of seizures and some new seizure that I never did find out what they were. I now sometimes dig my nails into my skin when having a seizure in my sleep. The older I get the worse they get.

I use to have 100s of absence seizures a day now the main one is myoclonic. One of the new seizures I had before they upped my dose was weird. It literally tossed me in the air and flipped me over. Wish I was joking.

They never gave my mom a lot of resources and didn’t give me much information growing up so I was confused about what was happening to me. I didn’t understand they were seizures at the time.

I’ve never been able to work cause they have never been fully controlled. So I started bringing awareness to epilepsy on TikTok and YouTube. I have other stuff too so they aren’t just about epilepsy but it’s one of the main focuses.