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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 severe.
When I used to be 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 (in all probability what somebody may think once they consider a stereotypical seizure). At that time, I used to be placed on remedy for my epilepsy.
I had a number of unwanted effects on account of this remedy, and I wasn’t actually open with anybody about what I used to be going by way of. I skilled a number of nervousness, hyperactivity, and insomnia. Plus, the second I used to be placed on remedy, my high quality of sleep was severely impacted. I felt very low, and unable to pay attention—that are signs of epilepsy, however I imagine they have been exacerbated by the remedy, as nicely. Considering sleep deprivation and stress are two main triggers, this was all very regarding.
While folks 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 yr, however there was an incessant worry of getting one on the improper time, or what may occur in consequence—falling and hitting my head, shedding management of my bladder, experiencing it when nobody was round.
There are additionally completely different sorts of seizures, past grand mal. I additionally endure from myoclonic jerks, that are little interruptions within the mind—I at all times describe them as like matrix interruptions, when my palms will kind of jerk open. I additionally expertise what’s generally known as an aura, which appears 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.
Each time I had a seizure, I felt like a bit of myself had been robbed not directly. Each one precipitated mind injury to a point and, in my expertise, a lack of confidence. It appears like your complete world has been turned the other way up. It’s completely terrifying to get up and see folks above you, asking if you understand who they’re, and should 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 might not think about. And, sadly, epilepsy comes with a horrible stigma, so I just about saved my invisible sickness to myself for years.