Epilepsy - Blog Posts

trying to figure out how to submit myself as a case study cause what the everlasting fuck is wrong with me !

Please stop trigger tagging with #epilepsy tw/cw/warning/etc.

I need every single person to understand how horrible tumblr’s tagging system is

I go into the tag for epilepsy and its all flashing lights. We can’t use our own tag because people without epilepsy fill it up with improper warnings.

Use ‘flashing’ in place of ‘epilepsy’ in your tags. You aren’t warning people of epileptics, you’re warning us of flashing lights. Please please tag properly. Epileptics say this endlessly and constantly and it’s ignored. You are risking lives by doing this.

Here’s proof of what I mean:

THIS POST IS 100% OKAY TO REBLOG, I ENCOURAGE PEOPLE WITHOUT EPILEPSY TO ESPECIALLY DO SO!

First day using my cane went bad tbh-

I didn’t have it at the correct height so it hurt my shoulder for a while and now it’s sore and some people stared at me but it stopped me from falling so many times which is great I feel really supported by it which is great! My friends say that it matches my aesthetic which idek how it does but thank god it does

I’ve noticed this too but I don’t have frontal lobe epilepsy but since my first seizure I also noticed worsened autism and tic symptoms. I am photosensitive. Has anyone else noticed this?

Just a little something about me. I've had epilepsy for 3 years now and it is tough. This just came to my mind because I have memory loss everytime. That's the name of my epilepsy 'Temporal Lobe Epilepsy'. As I've started my new job, I've been forgetting a lot of things that I've done and when I explain something new to my friends or family, I then forget what I'm saying or what I've done at work 😓. But it's not only work, I lose my memory quick anytime and takes me a while to remember. Good thing that I have an appointment with my epilepsy nurse next month. Need to talk to them more 🤲🏻💖

Seizure First Aid. 

Learn it. Share it. Know it. Use it. 

TL;DR : Please report any adverts or blaze posts you see that contain flashing images to tumblr.com/support 

After my blaze post about disability access in media was rejected due to reasons ungiven, I got in contact with Tumblr and pointed out their irony in rejecting my post but continuing to promote adverts that contain dangerous levels of flashing imagery, high contrast colours, and glitch effects. 

They told me to screenshot/screen record any of these adverts I saw and report them to tumblr.com/support along with the approximate date and time and the website they redirect to. 

Of course, for Photosensitive people who have been forced to witness these adverts, this sort of thing is nearly impossible. How can you have the wherewithal to report an advert whilst suffering from a seizure or migraine? 

This is where Allies come in! Please can you collect any and all adverts you see that contain flashing lights at a rate of 3 Flashes Per Second or higher/Glitch Effects/High Contrast Colours? Then, on 26th March (Epilepsy Awareness Day) I suggest that we all send these adverts in on mass! It’ll help to get our point across that this is a REGULAR OCCURRENCE that affects an entire community of people, and hopefully we’ll be able to enact some actual change to make this website more accessible for disabled people! 

If you are seeing this after 26th March, or worry you’ll not remember to do so by then, fear not! You can send the posts to Tumblr Support year round! It’s just useful to have a date to organise these things around for maximum impact.

Weiterlesen

There is a new Chrome extension that detects if a video you’re streaming has a strobe in it, will freeze the video and stick this warning up there until you approve it.

WHERE THE HELL HAS THIS BEEN ALL MY LIFE????

Photosensitivity warning for Good Omens season 2.

I can’t believe we have to keep doing this over and over again but in season 2 episode 1 of good omens there is a long scene (upwards of ten seconds, which to me is long for an extremely dangerous epilepsy trigger) of very bright white and red flashing lights. It’s the entire screen. Unfortunately for me I was already watching this with a migraine coming on and I’m immediately in agony. There was no warning whatsoever before this happened. It’s at almost the very end of the episode. Please reblog to save someone a migraine or seizure.

Also people forget to warn, the software itself should scan moving images for rapid changes of brightness and hide the video or gif behind a “do you want to see this” dialogue. TikTok did that, idk if it still does.

Please stop trigger tagging with #epilepsy tw/cw/warning/etc.

I need every single person to understand how horrible tumblr’s tagging system is

I go into the tag for epilepsy and its all flashing lights. We can’t use our own tag because people without epilepsy fill it up with improper warnings.

Use ‘flashing’ in place of ‘epilepsy’ in your tags. You aren’t warning people of epileptics, you’re warning us of flashing lights. Please please tag properly. Epileptics say this endlessly and constantly and it’s ignored. You are risking lives by doing this.

Here’s proof of what I mean:

THIS POST IS 100% OKAY TO REBLOG, I ENCOURAGE PEOPLE WITHOUT EPILEPSY TO ESPECIALLY DO SO!

Seizure First Aid. 

Learn it. Share it. Know it. Use it. 

@pokeblog123

Fellow epileptics, I have some fantastic news for you. There’s an add-on that makes the internet safer for us. It’s called Epilepsy Blocker. The creator had me test it out, give feedback, he made adjustments, and it works great. It may even help those with migraine disorders that are triggered by the same thing that messes with those of use with photosensitive epilepsy (mine is a case of being absurdly sensitive).

This is the only add-on I’ve encountered made specifically for those of us with epilepsy. It’s not a well known add-on, but I hope to see that change.

i consider seeing avatar 2 in theatres a selfish act

Today is Epilepsy Awareness / Purple Day 💜 my human suffers with epilepsy. Epilepsy is a brain disorder that shows its self as seizures, auras and feeling dizzy, amongst other symptoms. We think it's important to raise awareness of epilepsy 💜🐾 - Kitten Sachie

This actually reminds me of a time I was in a hospital at an Epilepsy Monitoring Unit. It was in a pediatric hospital because I was 16 iirc. I was supposed to be there for three days, and potentially be temporarily taken off my meds while I was there. Well the woman who did my EEG there stopped it after 24 hours. She completely ignored the directions and never took me off my meds for the time I was there.

The issue is, i am diagnosed with epilepsy. I have had it show up on an EEG before. I also have PNES, for context. Right now, my epilepsy is managed enough that my PNES is the main issue.

The fact she immediately ignored all directions the moment she saw I was having PNES episodes from the portion of the EEG she saw. If she just did what she was asked, would I have gotten a better understanding of my epilepsy?

I don’t know if this is truly malpractice or not. Just felt the need to get it off my mind.

“You know that’s medical malpractice right, no doctor is actually doing that.”

Bold of you to assume doctors actually care about what’s malpractice or not when it comes to treating disabled and intersex people

I am tired. but we will persevere

PNES are PNES. It's a psychological, conversion, functional, dissociative seizure. Of course it's non-epileptic. But. Often missing the word of the seizure being functional can harm those who have non-epileptic, but NOT psychological seizures.

Non-epileptic ≠ Functional.

Get over it.

Non-epileptic seizure doesn't mean that the seizure is due to FND or PNES! There are much more conditions than epilepsy and PNES. Stop seeing only white and black, when there exists a gray side.

Sometimes it amuses me how if epileptic will have 6 seizures in one day, they will be hospitalised immediately and given treatment, while with dyskensias they just... Give the "Well, damn, but you're conscious during seizures." Yeah, I am, but why the fuck I had 6 in a row?? Sometimes, I think that tearing my ligament wouldn't be as hard as getting treatment, lol.

Calling every chronic illness a "disability", is low-key stupid, don't y'all think like that? It is almost as if y'all tried to put a label on everything you don't understand. Sometimes, illnesses can, just... Not fit in your expectations. And y'all should accept it. Repeat after me, "Not every chronic illness is a disability!".

Not all seizures are epileptic, and not all non-epileptic seizures are PNES. Hope this helps!

And still, I'm curious how an appointment which I used to go to every week a few months ago, turned into something I'm afraid of. Making me have flashbacks over and over when I just hear the word "neurologist. Made me have a whole panic attack just because I need to go to a doctor. No, please, I don't want to be treated anymore... Can't you just avoid me? Don't remember about my disease? Make me live a normal life?

No. My epilepsy is NOT a disability. Why though? Because it doesn't prevent me from doing ANYTHING. It doesn't affect me all the time. Yeah, someone could say "B-but seizures are a disability!!!" Yeah, they could be. But, have you read the criteria to get disability with epilepsy? No? Okay, I'll list.

– Frequency of seizures. If they are too intense and happening too often (for example a few times per day.)

– Decrease in intelligence.

– Mental issues.

– Impaired ability to move.

– Developmental disorders.

So, that's why epilepsy doesn't make you automatically disabled, it just makes you ill. So, I prefer to use the term "sick, but able-bodied." Instead of disabled. Y'all should accept that disability is a status given by law. So, if you're getting money for your disability, and you have this status in your documents – you're disabled. Or at least if your disease is affecting you most of the time like POTS, fibromyalgia, arthritis etc. you're disabled.

But even if chronically ill means being disabled... I still prefer to be called able-bodied. I'm not disabled. So I don't deserve to be called disabled. Leave space for someone else, not me.

I'm waiting to be hated for my opinion. I don't mind anymore. I don't want to call myself disabled and bury myself in my illness. If I'd be hated for that, but I'd still be able bodied, I don't mind. You can call me like you want, and call yourself a disabled if you have epilepsy, because I'm talking about MY CASE not YOURS.

Thanks for reading. Stay healthy.

I understand everything. But y'know what? I'm still able-bodied despite being chronically ill. Yeah, I have some diseases and yeah sometimes they affect me. BUT. I'm not like this for the whole time. I'M NOT THE PERSON WHO DESERVES TO BE CALLED DISABLED. I'm sick, but able-bodied.