Content Warning: This article contains descriptions of a medical event.
This last week, I hit the five-year mark from my first seizure, woohoo! I’m now a diagnosed epileptic, and I wanted to talk about my experience.
First things first, having a seizure is freaky. Losing control of my body makes me feel like I’m about to slip into a space that I’m not confident I’ll wake up from. During that first seizure, my mom saw, and she was terrified because my lips were turning blue from not breathing. I’m a little tempted to pick up some blue lip gloss now.
On a lighter note, the way I stiffened looked like I was doing the “Thriller” dance, so now I can play that to mess with her.
In a weird way, I think it was harder on my family than me. Like, my mom had to watch me seize for several minutes before it stopped, and then it took a while for me to wake up and know what was happening. On my end, I wasn’t conscious, and then suddenly there was a man asking me what year it was. That day, I was more worried about going to work than going to the hospital. (Don’t worry, I went to the hospital.)
After the ER trip was when things got rough for me. I found out that the triggers for my seizures would keep me from pursuing the career I planned, so I had to change gears with the couple of months I had before application season. I had to leave my job because I couldn’t drive for a year.
Then there were the tests. Short term EEG, a long-term EEG, and then a week-long EEG. Checking my blood levels. Scanning my heart. Never getting clear answers.
I found out after a couple of months that I am epileptic, though they still don’t know what kind I have. I did the week-long EEG twice, once for each of my recorded grand mal seizures, and while they saw activity, I didn’t have an actual seizure, so they couldn’t get a proper diagnosis.
I was going to a pediatric neurologist when I started college. That first year I kept having auras and losing feeling in my left limbs and vision in my left eye. I called her, she said not to worry about it. When I went to my adult neurologist the following year, I found out that I had over ten seizures that year, which culminated in a grand mal seizure while I was alone in my dorm room the second day of my second year.
A little side bar, auras are the short time of consciousness before a seizure. Mine is seeing a bunch of letters and images that I can’t quite pick out. You can read more about them here, at the Epilepsy Society website.
That time, I had FaceTimed my boyfriend, who had to borrow someone’s phone to call my mom because she had my room number. He stayed on the phone to time it, and the poor guy is probably traumatized. Again, for me, the stress didn’t come until after, when I had to coordinate rides for me to get to my clinical site.
Even my roommates were freaked out, but that’s probably because campus police showed up knocking on my door with no warning.
I’ve, luckily, been seizure-free since then. They’re caused by stress and exhaustion, though, so my family calls midterms and finals “watch weeks”. I have to take a medication that makes me feel constantly exhausted, but it did help with finding scholarships! My seizures happen while I sleep, though, and it took me a while not to be terrified to nap.
Still, my day to day is normal. I take a few pills, and then I’m fine. There’s always a chance I’ll have another, but I’m incredibly lucky that I’m able to live my life this easily. It’s a constant thought, but not a constant issue.
So many people with epilepsy don’t have that chance. If you happen to see someone experiencing a seizure, here’s a helpful guide on what to do, also provided by the Epilepsy Society. Not a lot can be done, but following these steps can absolutely save someone’s life. And if you’ve ever had a seizure, I’m sorry, they suck. Try to get some scholarship money out of it though!