“I used to be scared of the seizures, but my worst fear now is the side effects of the meds and condition.”
“I wish people could see what else happens to me outside of the 20 seconds to 2 minutes when I have an absence seizure. I think people think that the seizures are the worst part of having epilepsy, and that it is the only thing we have to deal with.
I used to be scared of the seizures, but my worst fear now is the side effects of the meds and condition. As I have grown older, my headaches and brain fog have got worse. I have been told that the cluster headaches are linked to the condition by my neurologist. I work full time and my memory is a big impactor on that. I have devised ways of helping myself but forgetting people's names is an issue, especially when I've known them for years. Also when I coach people, I sometimes forget odd words and it's embarrassing. Lots of people don't understand this. I expect it will get worse, but I'll continue to fight it off. My workplace is very supportive and it helps me to let people know what they can sometimes expect, alongside the seizures themselves.
I've almost walked off a train platform 3 or 4 times in my life . My biggest fear is that it would be classed as suicide, when I actually was autonomous and just had no control at the time during my seizure.”