At age 13, I used to be recognized with juvenile myoclonic epilepsy (or JME). It’s not almost as extreme as my sister’s type of the situation, however however critical.
After I was 15, I skilled my first tonic-clonic seizure (also referred to as a grand mal seizure), which causes muscle contractions together with lack of consciousness (most likely what somebody may think after they consider a stereotypical seizure). At that time, I used to be placed on treatment for my epilepsy.
I had quite a lot of unintended effects because of this treatment, and I wasn’t actually open with anybody about what I used to be going via. I skilled quite a lot of nervousness, hyperactivity, and insomnia. Plus, the second I used to be placed on treatment, my high quality of sleep was severely impacted. I felt very low, and unable to pay attention—that are signs of epilepsy, however I consider they have been exacerbated by the treatment, as properly. Contemplating sleep deprivation and stress are two main triggers, this was all very regarding.
Whereas individuals primarily affiliate my situation with seizures, it’s additionally about dwelling with the worry of a seizure. In my case, I used to be having shut to 1 grand mal a 12 months, however there was an incessant worry of getting one on the improper time, or what would possibly occur because of this—falling and hitting my head, shedding management of my bladder, experiencing it when nobody was round.
There are additionally totally different sorts of seizures, past grand mal. I additionally undergo from myoclonic jerks, that are little interruptions within the mind—I all the time describe them as like matrix interruptions, when my arms will kind of jerk open. I additionally expertise what’s generally known as an aura, which appears to be like like I’m zoning out, however actually it’s a sort of seizure. Plus, people who find themselves epileptic have photosensitivity, so I wanted to be cautious of brilliant flashing lights, to keep away from triggering a seizure.
Every time I had a seizure, I felt like a chunk of myself had been robbed indirectly. Each triggered mind injury to some extent and, in my expertise, a lack of confidence. It appears like your entire world has been turned the other way up. It’s completely terrifying to get up and see individuals above you, asking if you recognize who they’re, and in case you’re okay. In these moments, you don’t have any concept what occurred, aside out of your pounding headache.
There are simply so many layers to it that individuals who don’t have this situation could not think about. And, sadly, epilepsy comes with a horrible stigma, so I just about saved my invisible sickness to myself for years.
