alt Hacker NewsThanks for being so open about this. Have you worn one of those diy and prosumer EEG devices? So when you have visual seizure, I can only imagine it is somewhat similar to visual migraine, that is my only reference, you tap log it on your device which triggers some web request. Have you noticed any patterns? What do your doctors think of the data? You sound ideal for working in a neuroscience lab, :)
Never heard of a DIY/prosumer EEG! I did do an ambulatory EEG for the hospital once overnight where I left wearing the fancy cap while all wired up, with a little backpack for the electronics and recording device. All the EEG leads fell off when I was sleeping overnight, so it ended up only getting about 6 hours of data, instead of 12 hours (but I got charged like $600 anyways).
My whole Django app is actually open source, including the Apple Shortcut that sends a JSON POST to Django REST Framework to add seizures.
https://github.com/ericoc/seizures.ericoc.com (lots of screenshots and examples of the live data)
I definitely have patterns. I swear my occipital lobe needs its watch battery changed. I occasionally will have 3-6 seizures all spaced exactly 10 minutes after one another. Sometimes exactly an hour apart too. To the minute.
Doctors like when I hand them a chart showing my seizures going down over time, but hate it when the chart shows them trending towards more frequent. The brain seems SO poorly understood from my perspective. I get the feeling that neurologists are not sure what to say or think about the data, since it is not an EEG or MRI.
I called my seizures "double visions" as a kid. They usually only last a minute or two. I can generally carry on a conversation without anyone knowing (besides from noticing me tapping my watch, maybe). My parents and my ex-wife could occasionally tell when I was seizing, but I live solo, commute on foot, and keep my cat alive.
My seizures really just consist of an odd minute or two of an "aura" (I know it's happening) with double vision and confusion. However, I have occasionally had much worse seizures - usually only if I miss medication, and when asleep. I once woke up to a passenger on a commercial flight telling me that they were a doctor while we were mid-air, before I threw up. I have also woken up on my bedroom carpet with bumps, bruises, and scratches maybe half a dozen times in ten years, but have never had any seizure-related injuries requiring urgent/emergency trauma care.
Stress definitely seems to be a trigger for my seizures, but not photosensitivity. I do not really mind strobe lights, but the randomness of the Sun shining through tall thick trees while driving down a long straight road is terrible.