[epilepsyculture-is]

epilepsy culture is avoiding certain pieces of media, that you would otherwise really enjoy, in the interest of your own health, but then feeling like you're missing out.

[snorlax-and-co]

[aspenonthecoast]

Why I can't "just do the thing" - a diagram.

Signed, an autistic person with adhd, depression, and chronic pain.

(Still a work in progress, feel free to suggest squares to fill in!)

[haikyuupaladin]

Ok, here’s my next post for epilepsy awareness day today!

There are many different types of seizures. Not all of them are going to be visible to someone who doesn’t know what to look for. The main type people can identify as a seizure with ease without any education is called a tonic-clonic seizure. The most common types that are trickier to identify, especially from the outside looking in but also sometimes for the person experiencing them, are absence seizures, which look kind of like the person is just sort of daydreaming/not paying attention if you don’t know to look for subtle signs that may vary from person to person, and myoclonic jerks, which look kind of just like a short muscle spasm a lot of the time. (I’m oversimplifying a bit here, but they’re both easy to overlook is the main point). I’m explaining this partly for explaining the types of seizures, of which these are only a few examples, but also to explain that epilepsy can be much more “invisible” than people think. I feel like the common perception is that if someone around you had epilepsy, you’d know, but that’s not always the case, so please, keep that in mind before you make assumptions that can harm or exclude the epileptics in your life, that you may not even be aware are there.

[fuckepilepsy]

So way back when, probably 2014 or so? @waitfiveminutes started a side blog called "Just Epilepsy Things," which was a play on the popular "Just Girly Things" blog.

Wait5 deactivated the blog at some point, but I was able to scavenge these few from the depths of epilepsy Tumblr's forgotten past.

[ashuhleyepileptic]

A Blood Test For Depression and Bipolar Disorder - Neuroscience News

A Blood Test For Depression and Bipolar Disorder - Neuroscience News

A new blood test can distinguish the severity of a person's depression and their risk for developing severe depression at a later point. The

[transmanace]

In honor of today being Epilepsy Awareness day...I just wanna bitch about something epilepsy-related.

I hate having to take medication. It controls my epilepsy 100% but that's besides the point. It's really annoying that one day I'll have significant damage done to my liver and kidneys all to not have seizures.

I've been thinking about that a lot recently and it sort of makes me want to talk to my neuro about either switching to different meds that...y'know...*won't* damage my kidneys and liver one day, or try a high dosage of CBD oil in place of my meds?

I dunno. Doesn't seem like a smart alternative for meds I've been taking my entire life but it seems like a good idea to me to avoid future kidney and liver problems. 😓

[fuckepilepsy]

I also take an AED that threatens my liver. I have annual hepatic function tests to make sure that it's still in working order. A couple of times my leukocyte levels have dropped a little, which worried me, but a follow-up test indicated that things were still okay.

Still, I know that the day is coming when I won't be able to take that medication anymore, and I live in fear of it. As you say, I don't want to have to choose between not having seizures and not having a functioning liver.

[ashuhleyepileptic]

I literally chose to have brain surgery, in hope of not having to take my meds anymore. Only to have them tell me they couldn't fully detach the clump of overgrowth (I forget the medical term. It's not harmful though). So it's still sitting inside my head, 80% detached. I started having seizures on the table and they had to stop surgery.

Still gotta take 3000mg of keppra, 600 of zonegran, and b6 for the side effects. Just a fun story now to tell the grandkids.

[chomametchi]

it's fun when you're epileptic and you also dissociate a lot because you'll never know if the weird feeling is just normal dissociation or if it's actually a warning sign and you're about to have a seizure in two seconds

[haikyuupaladin]

This Friday, March 26th is Epilepsy awareness day. I’m posting this today in hopes that it will spread a bit by then. I have a challenge for all non-epileptics who see this post. Try to avoid strobes and other flashing lights all day Friday, and keep track of how many times you encounter them. This includes repeated camera flashes and police lights amount other things. Not everyone who has epilepsy is photosensitive and not everyone who’s affected by flashing lights has epilepsy, but photosensitivity is the trigger that society could most easily avoid causing that is most prominent in everyday life (and I’m not saying that emergency vehicles and such shouldn’t have flashing lights because it’s an important indicator for deaf and HoH people, but I do want you to include these things in your experiment because photosensitive epileptics have to count them as potential triggers). The point here is to simulate a small part of what some epileptics experience daily and to become more aware of some factors that make the world around you inaccessible to some of us.

If you would like to add stakes to challenge, set an amount you’ll donate to epilepsy organizations such as the Epilepsy Foundation or Epilepsy Action each time you encounter flashing lights that day

TLDR; please try to avoid flashing lights on March 26th, epilepsy awareness day, to make yourself more aware of how society is often inaccessible to a portion of people with epilepsy. If you want to add stakes that will help the community as well, set an amount you will donate to an epilepsy charity each time you encounter flashing lights

[fuckepilepsy]

Pretty sure i only have a few non-epileptic followers, so this is a signal boost from me.

[ashuhleyepileptic]

So, what do auras "feel" like? I can't ever remember having any, from blacking out during my seizures. Anything about 2 mins beforehand, is blank in my head.

I'm a lot better at sticking to my meds now, I haven't missed any in months. And on days when I push myself a bit, my head feels funky sometimes.

I've taken the past month off to figure myself out... Med side effects, how to treat them, a better line of work, etc. So when I'm sitting around all week doing barely anything, then I get going on the weekend to clean and stuff, I feel super tired if I sit down. And it's like my head is almost telling me, if I wasn't on meds, I'd be having a seizure.

But I could also just be jumping to the extreme, bc I'm so used to it happening. Any sign of stress and I immediately worry. Idk 😶

[fuckepilepsy]

The other day I walked in on my friends (at school) talking about a kid in their elementary class who had epilepsy. 

At first, it was fine. We just trashed one of their teachers because they would flick the lights on and off to get the class to settle down (though they were aware it was one of his triggers).

Then, the conversation moved to “OMG it was so scary when he had a seizure.” And the group consoled her.

Idk. I guess my point is: How do you tell your friends they sound incredibly selfish and that, as ‘scary’ as it was for them, the guy who was pretty much harassed by his teacher into having a seizure had it a lot worse?

Submitted by @bandshirts-andbooks

[ashuhleyepileptic]

It's so misunderstood, bc it's "invisible". No one can see what's going on in our heads. So they assume we're fine, until something happens. Med side effects , are just something else dramatic.

Like everything has been flipped around and I still have periods of depression (or maybe I've just been slightly depressed this whole time lol and it got worse a bit ago so I was finally treated).

Just blah

[king-of-the-rain-and-wolves]

• Memory Books •

Thoughts on epileptic memory loss

My memory is like a huge library, but without any sort of Dewey decimal system or any type of sorting. I sit there in my head surrounded my books and books of memories; some of them old, probably decaying, some of them newer. Sometimes, my librarian gets a request for a memory book. They have stocked all the shelves and handled all the memory books, so in theory they know what each one looks like. However, there is no catalog system, and the library is so big, with so many books, and there are more books being added every day. The only way to retrieve a memory book is if the request includes specific details of the memory; the librarian will dart of in search of it, trying to remember and find the last place they saw that memory book. The higher the detail, the higher chance the librarian finds the right book. Sometimes they find it. Sometimes it takes a while to find and the librarian retrieves it and brings it up to the requester, even if it's a day late. Sometimes they don't find it at all.

Others' memory have decaying and old books as well, it's true, but they have catalogs. They have orderly rows of labelled shelves and organized categories. They might even have a whole staff of librarians, depending on how sharp they are. I have stacks and heaps and disorderly shelves of books, with no catalog, and one librarian who is doing their best.

[ashuhleyepileptic]

I've been talking to my mom about moving in with her. she lives in another state, and I'd have to change my custody agreement. she asked again if I had talked to his father about it, then was annoyed that I hadn't. meanwhile, I was upset that she was annoyed with me. It turned into this huge argument , about how my "issues" (that's literally the word she used) are annoying also, bc I'm always asking the same things, over and over, and then she has to tell me the answers multiple times.

I got upset that she called my epilepsy an "issue", and she's like, "well, what do you want me to call it" , in a light voice. Like you'd do if you were talking to a pet or baby.

It was basically generational differences. How their gen didn't "baby" their diagnosis' , they sucked it up and moved on. While our gen is adapting and embracing mental health, trying to change things.

Idk. Makes me feel even more like the family outcast though.

[clowwnsoup]

epilepsy is like ... we gonna give u so much abnormal electrical brain activity ur not gonna kno what to do with it .... but ... for example .... perhaps ... muscle spasms? lapses of memory? lack of feeling in ur whole body ? dissociation? sudden laughing? almost dying?

[rendzina]

over coffee with my mom this morning: “sometimes we hesitate to invite people into our life because we feel like our space isn’t good enough yet. things are a little messy, or our place settings don’t match, or our situation isn’t quite what we want it to be. don’t let that stop you. invite people in anyway.”

[bellwitchfaggot]

This is so stupid but I literally have epilepsy and was clinically tested for it over 5 years ago and didn't realize till the cyberpunk seizure inducing shit that they flash those lights during epilepsy screening eegs to trigger seizures I really was having an eeg at age 16 having them flash seizure inducing lights in my face and was like well thats kind of rude...and I never questioned the purpose till I saw people talkin about the cyberpunk shit. Idk what I thought they used those lights for. I just remember seeing them behind my eyelids and being like well hello I am sensitive to flashing lights...that is so inconsiderate........

[fuckepilepsy]

“Are you jerks TRYING to make me have a seizure? I’m trying to get treatment for epilepsy here! How rude!”

Perhaps that was a failure on the part of your health care providers to explain the specifics of what they were doing. My EEG was a long time ago but I do remember them telling me what the strobe was for triggering seizures, which I was very not cool with, but it’s not like I had any say in the matter.

[haikyuupaladin]

I feel like EEGs are one of those things that doctors somehow manage to simultaneously overexplain and under explain. Like... they’ll explain the process every single time no matter how many times you’ve gotten an eeg, but they never explain what each part actually DOES really. It took me way too long to realize that the blowing on the pinwheel part of the eeg was to see if stress was a trigger.

[fuckepilepsy]

Like I’m gonna be stressed out by a pinwheel! I was in high school; all they had to do was say “Your Grapes of Wrath project is due tomorrow” and my blood pressure would have spiked instantly.

[ashuhleyepileptic]

I think I am light sensitive, and I tell everyone that, but I've only had seizures from super quick, intense strobes (on a theme park ride). It was before I was diagnosed. I just loved the ride a lot, and I remember getting on, and off it, multiple times.

It was enclosed in a large, warehouse type building, and would just go around in circles, sometimes stopping to reverse the direction. And the strobe lights flashed in time with the music, like a dance club almost. I would get off of it and I felt super dizzy, stumbling, I just assumed it was from the spinning though. With it being dark, if I did have one, whoever I was with wouldn't have noticed.

Fire trucks and police lights make my head hurt, and LEDs, I notice when they flicker. But the test itself, it's like it wasn't enough to induce one 🤷‍♀️

[clowwnsoup]

ooooo seizures coming in clutch!!!!!! being stabbed possibly in the month of June for having a wack brain ✊🏼