My worst seizure

A chilling scream pierced my eardrums, a scream I recognised: it was me. I never knew I could scream that loudly, with so much fear. I couldn’t stop screaming, I was in no way in control of my body and that was maybe the most terrifying part. My jaw stiffened and clamped down onto my tongue, again out with my control, and I remember saying over in my mind “it’ll all be over soon”.

This was without a doubt my worst ‘major’ seizure. Technically it was no different from any normal ‘major’ seizure apart from one vital detail: I was awake during this seizure, I didn’t lose consciousness as I would normally have done. Before this seizure when people asked me what it felt like to have a seizure, I couldn’t give an accurate description because I didn’t know myself. I know how I looked to other people when I was having a seizure, but I didn’t know how it felt.

My neurologist and specialist nurse both had no idea why I could remember this particular seizure, but it is without a doubt in my mind the scariest thing I’ve been through. When I stopped seizing that night, I couldn’t breathe: I was hyperventilating from fear. I was taken to hospital and when they had finished with all the routine tests, I was given a drug which calmed me down and allowed me to go to sleep.

After that night it took me a long time to get over it. When I lay in bed at night I wouldn’t be able to sleep because I was worried I was going to have a seizure. I was constantly terrified that I had another one of ‘those’ seizures I would remember it and go through that sheer terror again. I was more afraid of being afraid than I was of the actual seizure. I was referred to a psychologist who suggested I had Post Traumatic Stress as a consequence. With her help I managed to ‘get over’ the experience as much as I could, with the use of different techniques which help me even now, two years later, in totally unrelated matters of worry.

I decided to go back on Epilim – the drug which controlled my seizures almost completely but which left me with an increased appetite as I hypothesised I would rather be overweight and seizure-free than a ‘normal’ weight and still running the risk of a ‘scary’ seizure like that one.

Thankfully since that night I have only had one major seizure and I don’t even remember the start of that one, leading me to believe it was probably a one off. However it left me incredibly grateful that my epilepsy is easier to control than some peoples, so I have a lot to be thankful for.