“I Have Epilepsy — And This Is How It Feels When I Have A Seizure”
By Kelsey Jones
“The feeling of trying to get somewhere safe, not in front of lots of people — and having no control to stop it — is horrible…”
How I know a seizure is coming…
I’ve suffered from Juvenile Myoclonic Epilepsy for the past seven years, and one of the warning signs of an impending seizure with this type of epilepsy is twitches.
My twitches can range from a jerk in my fingers, a stutter, a guttural noise in my throat, to an upper body convulsion. These are my warning signs that a grand mal seizure is imminent. For me, these warning signs are terrifying! Sometimes, when I have a small twitch, I’m able to take more medication, lie down and am alright. However, if my twitch is more severe, the feeling of trying to get somewhere safe, somewhere private, somewhere not in front of lots of people — and having no control to stop a grand mal seizure, is horrible. Often my twitches occur when I’m stressed, or sleep deprived, which can be during exams or lectures and often leaves me feeling that I’m unable to control such situations.
The agonising waiting game
The feeling of not knowing whether it’s going to happen is difficult. After having twitches and taking more medication, it’s merely a waiting game to see if, or when, a grand mal seizure will occur. I’m thankful that I do have an early warning system and am able to try my best to get to the safest place possible.
Exactly how it feels to have a seizure
During a grand mal seizure, I am unaware as to what’s going on and have no recollection of the actual seizure afterwards. But I can feel the after-effects on my body: my muscles ache due to the spasms; depending on where the seizure has occurred, I can have bruises or cuts from falling onto something if someone isn’t quick enough to catch me; and I usually bite or cut my tongue from clenching my jaw.
Immediately after my grand mal seizure, I have a severe headache and have to lie down, let my muscles relax and sleep for an hour or so. My worst feeling is waking up and realising that I’ve had a seizure, trying to recollect where it occurred, and whether I’ve embarrassed myself. Having a seizure in public makes me sad because I know it isn’t a pleasant thing for others to watch. All of my friends are incredibly supportive and know exactly what to do when one occurs, but I know it’s a horrible thing for them to see, so waking up knowing they have seen it is very upsetting for me.
All in all, though, the support I receive helps with the feelings of frustration and sadness, and knowing that through medication and lifestyle I can control my epilepsy to a certain degree.