Living with Myoclonic Epilepsy: A Daily Struggle

Keppra made my seizures worst tegretol is all that works for me

God bless your heart your going to be ok Im in the same boat full grandmas all the time especially in the morning I hate that feeling when you come out of a seizure and u don't even recognize your own house it's so scary

Hey! I was diagnosed when I was 12. Just a normal day at a town BBQ and fell to the ground and had my first seizure. They thought maybe from the heat but I had been on and off the water slide all day then test after test they came to the conclusion of epilepsy. I'm the first in my family and I honestly wish I was never born sometimes because of it. I finally got the birth control bar put into my arm in September 2020 (16) to see if adding extra hormones would reduce them and it did but I was on my period for a year straight😂 finally got the pills bow I'm on a regular cycle. Mid 2021 I started having myoclonic seizures and so I got prescribed Guanfacine. Im suppose to take half a MG once daily but I don't take it cause I feel like it's just a placebo. I was still having them after a month of taking it and it hasn't done anything to help. Almost a year later and they've only gotten worse but I've managed to find some triggers. It's definantly hard on a day to day basis. Especially when going out and starting to have the "tics" and then you have people giving you weird looks or kids pointing. I'm 17 bout to be 18 and i don't know if I'm ready to be on my own with how my epilepsy effects my mental state. I can't even talk to people/family about it cause nobody truly understands. I did meet 2 people while gaming 2 weeks ago who have epilepsy. The first people with epilepsy who I've met since this started. It made me so happy. Especially having someone to call when I feel like I'm gonna have an episode who truly knows how I'm feeling and helps prevent it.

I've definitely felt like this especially recently when my seizures have started coming back. It's been difficult to be positive. Epilepsy cannot define us, I've learned that over the years but it's definitely been extremely hard to do.