Posts Tagged ‘advocacy’

Since I promised that post, here goes nothing.

I had my first seizure in April of 2019 when my mother was still alive.

It woke me up from deep sleep, and I went through the whole aura, seizure, and postdrome.

Since this was my first seizure, I didn’t know what was going on and felt like I was dying. It lasted a few minutes, but my sense of time was heavily distorted — to me, it felt like absolutely forever. And symptoms of it left as quickly as it came on, although I felt exhausted at the end of it. For me, the aura often involves experiencing an intense feeling that does not quite match the situation, and the seizure itself feels like my brain is being shocked or an egg that is thrown against hot concrete to cook. I can vocalize during these, although the people that I have vocalized to have told me that I seem “off” having these conversations. I don’t want to vocalize while I’m having them though, not unless I have to, because it feels like I’m taxing the small part of my brain that is completely aware of what is going on. I can also do very basic things during some of my seizures, which perplexes me. Others, I have to wait until it passes. There is no rhyme or reason.

Sometimes I can go months without a seizure. Other times, I have multiple seizures in a month.

I also do not have any involuntary motor movement. However, I am known to hold my head with my hands and rest my elbows on my lap, and the quieter my surroundings are when they can help it, the better. Almost all of the time I still feel the peculiar emotion that was present during my aura, although by the end of the seizure my feelings have returned to normal. Being on Gabapentin for migraines has really helped me out.

Another feature of my seizures are racing thoughts, which also completely stop when the seizures stop.

This is why I am not playing Cyberpunk 2077.

When Cyberpunk 2077 came out, I was initially excited to play the game.

However, that was short-lived when I found out that a certain part of it caused people to have seizures.

I am epileptic myself, although I retain awareness and consciousness during all of my seizures, and I have no involuntary motor movement. Even though I do not appear to be photosensitive, it wasn’t — and isn’t — a risk that I was (am) willing to take, especially if I had a seizure that… laid me out, so to speak. Even though that was almost immediately patched and friends of mine have told me that that section of the game is a lot “tamer”, I still haven’t played our copy of Cyberpunk 2077. I’m waiting for a lot more information to come out about it, especially that part of the game. My seizures feel like something is shocking my brain, like my brain is an egg thrown onto hot concrete, immediately cooking. If I can avoid them, that would just be awesome.

That also reminds me that I would like to write a post all about my epilepsy since why not?

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