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So with the heinous epilepsy-related stuff we’re hearing about Cyberpunk going around, I thought it would be good to make a thread of some #epilepsy information that the general, non-epileptic public may not know. There’s lots of misinformation going around. 1/
I have generalized epilepsy, and I’ve had absence seizures and tonic-clonic seizures. Which starts me off with my first fact: there are different types of seizures! 2/
The media-portrayed seizure, where a person drops to the ground and shakes and is generally non-responsive, is called a tonic-clonic seizure. This used to be called a grand mal seizure. 3/
Usually, when a person has a tonic-clonic seizure, they are not aware that they are having a seizure. When I had my only tonic-clonic seizure, I thought I had fallen asleep and that everyone freaking out around me was overreacting. 4/
There are also absence seizures. They used to be called petit mal seizures. These are the hardest seizures to identify without the use of an EEG because it doesn’t typically involve any spasms or atonia (loss of muscle control). 5/
I called it “spacing out” bc it just looks like I’m looking off into the distance. They generally only last a few seconds. My consciousness is impaired during this time - I’m not aware of what’s going on - and my speech is stopped or slowed. 6/
Usually I can only tell if I’ve had a seizure if I’ve been talking and trail off. That might not sound very bad, but consider what it’s like to be driving or doing some other dangerous task and suddenly not be fully conscious for a few seconds. Yeah. 7/
There are also focal seizures (aka partial seizures) which only affect one part of your brain. Sometimes you remain conscious, sometimes you don’t. They’re different seizure to seizure depending on where in the brain they happen. They can affect your senses and emotions. 8/
There are many, many different types of epilepsy, and different causes. It can be genetic, or it can be caused from a traumatic brain injury, stroke, or infection. 9/
One seizure does not an epileptic make. Up to 10% of people will experience a seizure in their life, but only 1-3% of people have epilepsy (depending on age). My dr joked that you get “one free seizure” before they really start looking for epileptic conditions. 10/
And how do they find epilepsy, you ask? Good question! They use an electroencephalogram, or EEG for short. Basically they stick a bunch of electrodes on your scalp (it doesn’t hurt) and measure your brain activity. The electrodes look like this: 11/
And the readout of an EEG looks like this. The spikes show when a seizure happens. 12/
EEGs can take place in a doctor’s office or at home, and they can take different lengths of time. I’ve had 1-hour EEGs at doctors’ offices and 24, 48, and 72-hour EEGs at home. Here’s me during a 72-hour EEG, at home. (They put a small stretchy cap over the electrodes.) 13/
The different lengths of time are for various reasons. The doctors want to know if certain activities trigger seizures for you, or if different times of day have more seizure activity, or if there’s a difference between when you’re awake and asleep. 14/
EEGs are painless. The worst part of them is they put a gel on the electrodes so they stay stuck to your head and conduct the brain waves properly. They say it’s water soluble but it’s a fresh hell to wash it out. Anyway... 15/
Sometimes during in-office EEGs they will do a test to see if you have photosensitive epilepsy. Photosensitive means that certain light patterns will trigger a seizure. Only 5% of epileptic people are photosensitive. 16/
The test consists of sitting in a dark room with strobing lights that gradually get faster and faster to see if a certain pattern triggers seizure activity, and if so, at what speed. 17/
Level of photosensitivity varies from person to person - one person might only react to actual strobe lights, one person might react to ambulance lights, one person might react to flash photography, one person might react to high-contrast gifs. 18/
(At any rate, our entertainment has no use for strobing effects as seen in The Incredibles 2 and Cyberpunk 2077, or at concerts or haunted houses, but I digress...) 19/
Some tips if someone around you has a seizure: 20/
Do not mess with their mouths! You may have heard the rumor that in a seizure, a person could choke on their own tongue. THIS IS NOT TRUE. Do not attempt to put ANYTHING in a seizing person’s mouth. All you will do is break their teeth and risk getting bitten. 21/
If you know someone with epilepsy, ask them what their protocol is if they have a seizure. Some people will request no ambulances bc (#1) they know how to handle themselves post-seizure, & (#2) depending on the country they live in, an ambulance could be an unnecessary cost. /22
THAT BEING SAID, unless you have specifically been told by this person ahead of time not to contact EMS, you SHOULD call for an ambulance. Seizures can involve hard falls and head trauma. /23
Other seizure first aid info can be found here. PLEASE READ. https://www.cdc.gov/epilepsy/about/first-aid.htm /24
Let me know if you’re interested in more epilepsy/seizure info or if you have any questions! And please RT the thread for visibility. Epilepsy is a disability not many people know a lot about so it helps to inform as many people as possible. 
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