#actuallyepileptic

[whelpimnauthuman]

I wish, I wish, for nothing more than to go to sleep and not wake up sore

#chronic illness #chronic pain #chronically ill #i am. so tired of waking up sore and in pain and probably bruised bc i seized or slept funny or both #actuallyepileptic #actually epileptic #I'm. this close to tears over it tbh #at one point last week my legs were just. COVERED in bruises #mri on Friday so maybe that helps #also just got meds boosted so. waiting to see if that's helping or not

[sunkern-plus]

shout out to the people who can never have kids physically because their physical and mental health issues combined alone would put them at risk of serious harm or death if not on the right amount of pills at the right time, you guys are the real ones

#watching a the queer kiwi video about babylon bee's very unfunny shorts and like. the childless one is fucking awful #i don't want kids in the first place first of all #(not because i hate kids but because i doubt my ability to take care of any life more complex than a dog) #and second of all i literally have epilepsy so bad that i probably would die if i was off my medications #because my epilepsy is PARTIALLY TRIGGERED BY HORMONAL CHANGES #like if i have seizures if i'm on my period i will probably have seizures when i'm pregnant and that's uh. bad! #like my hypothetical baby would die of brain damage bad #like do conservatives WANT to be pro life or not because seizures + pregnant = dead baby #ableism for ts #actuallydisabled #actuallyepileptic #actuallypsychotic #actuallyautistic #actuallyocd #actuallyadhd #actuallyborderline #(because yeah without those mental health medications i'd probably die of suicide which. ALSO results in a dead baby) #again. why do they call themselves pro life if pregnancy for me would either result in brain death or suicide #(and pregnancy for people who had late onset epilepsy as bad as me and mental illnesses as bad as me)

[rebellum]

Okay so question for people with mental illnesses and/or epilepsy:

Does anyone know what causes the feeling of being crazy? Or of going crazy? Like I can tell I'm getting a little crazy rn over the past like half hour and know an episode is probably gonna happen maybe. But I have no idea what to even google to learn more about the psychology and neurology of this feeling.

Also included epilepsy bc its possible, but not confirmed, that I have a seizure disorder that manifests weirdly - or likely my brain is just a mishmash of various symptoms and chemicals etc. But I'm wondering if it's like an aura or something.

Happens before an episode (usually 30 minutes to a couple hours) where I get paranoid/slightly delusional, super insecure, and my mind feels... fast and choppy like a stormy sea.

#actuallyepileptic #pseriouslypsychotic #ocd #actually ocd #epilepsy

[a-dull-aching-pain]

Just to give disabled people the heads up.

I was watching something on a BBC channel, and it randomly cut off and starting showing a minutes silence for the Queen. Which soon turned into flashing lights without any warning.

#actually epileptic #actuallyepileptic #epilepsy #BBC #UK #ableism #disabled #Please stay safe #chronic migraines #migraines

[brainweird-moth]

that actually really do hurt . so excite for things this season could bring , but :

1 - why do players and especially staff not get real break from these events ? as players burnout is real , need more time calm down and regroup between events - and as staff , well , crunch culture cruel .

2 - when devs listen to and care for us disabled people in ways that , you know , maybe do inconvenience them and their vision little bit ? if your vision can quite literally hurt and put people in danger , then need take responsibility and give options , toggles , anything ! not fair that make playerbase stick up for each other and leave to dogs !

not have regrets about pick up this game , about characters that create and feelings that able express through everything here . but . hard not get frustrate with devs when things like this happen . when feel like safety ignoreable in favour of vision .

#moth journal #sky cotl #photosensitive epilepsy #actuallyepileptic

[disastrousbi]

I think it was one of my mutuals who reblogged it, but does anyone have that one post about photosensitivity not being taken seriously by social media creators/somewhat users but the post focused more on how its handled by the platforms? I really need it for a class oops

#actuallyepileptic #disability #epilepsy #photosenstive #flashing/lights #epileptic #social media #ablism

[springatito-moved]

No stronger love-hate relationship than that between an epileptic and a good night’s sleep

#actually epileptic #actuallyepileptic #I hate sleep but sleep makes my brain be normal. horrible.

[pilferingapples]

major flashing lights/ strobe/photosensitivity warning for Sandman episode 5, “24/7″ 

The worst of it comes once the storm starts--you’ll know--and runs through most of the climax of the episode, but there’s a lot of high-contrast scenes through the whole episode.

 I watched it in a daylit room and still had to not just look away but cover my eyes in the worst scenes and that still didn’t totally save me.  I know most of the episodes aren’t super photosensitive-friendly anyway, but this one’s especially bad.

#never sure what to tag these #actuallyepileptic #honestly this episode took me out for most of a day

[guitarlove6437]

With all the talk about photosensitivity in regards to recent movies, I wanted to talk about this in a different setting. A few years back, my sister was coming up for a visit for Christmas and she wanted to go to an-almost-all-December event the local zoo puts on. The whole zoo is lit up for the holiday season. I saw there was an accessibility section, which was nice, and I saw no mention of possible strobe effects. I emailed the support team for accessibility. The email I got back essentially told me there just too many lights to know for sure and to just not go. This is a zoo. This is a place primarily geared towards families. I recently went there for my nephew's first birthday. There were a TON of families with infant-seven? year old kids. Kids who've probably never seen strobe effects before. This wasn't the holiday season but now it's on the back of my mind. On a related note, I'm a big fan of theme parks. There are so many rides, thrill rides and flat rides, with strobe effects. The most recent disappointment I had was when my mom and I went on a trip to Holiday World. There was a new water coaster called Cheetah Chase, and it had strobe effects. Most coasters at Disney have strobe effects. My family brings up the idea to go but there are so many rides there I just can't ride. I don't know if I have photosensitive epilepsy or not, but it does tend to give me terrible dizziness and headaches. Strobe effects have become so normalized and I'm tired of it. It's ableism, plain and simple.

#actuallyepilepsy #actuallyepileptic #my stuff #ableism

[justepilepsy]

So when I was stuck in the UK around New Years 2020/21 i organised some extra meds from the UK, as I was running out of the ones i had brought for my initial visit.

Same medication, but different company/brand obviously.

I started now slowly using them up and I'm never taking them in the morning again. Those other-brand fuckers make me so sleepy it's hard to fathom. Holy shit...

#medication #valproid acid #actuallyepileptic #actually epileptic

[whelpimnauthuman]

Found a meme generator so guess who's roasting their brain

(memes below the cut

#tbh these are mostly me roasting myself bc i had a realization myself and then got carried away and went from there gjdndb #actually disabled #actually epileptic #actuallyepileptic #listen- LISTEN I 100% understand the side effects and why they happen and that I'm not necessarily going to experience them all #but the fact that it's POSSIBLE (and the ones i AM experiencing ex drowsiness+insomnia) are just funny fksnsn #I'm not mad just amused

[impunkster-syndrome]

I'm once the fence about neuropunk because it feels super autism/ADHD centric from the outside.

Honestly it's exhausting. I have barely ever seen discussions of stuff like epilepsy being neurodivergent/neuropunk. It's constantly seeing autism and ADHD as the center (mostly specifically when comorbid). Which... good for those people with those (ADHD person myself here). But I can't relate at all and it feels like the community is so hostile to anything but autism and ADHD being visible that it is exhausting.

Maybe it's the fact that the #actuallyepileptic tag is basically dead. That there's no community for it so it gets drowned out by everything else. Maybe it's because I don't post about my ADHD because it isn't the most distressing condition I have and there is virtually nothing new that I can say about my experience that hasn't been said better by someone else.

It's fucking heartbreaking to try to be in a community only for it to feel like your right to be there is not recognized and is spoken over.

If you know of any spaces to talk to epileptics that are active, please, tell me about them. It's more physical than my ADHD and BPD, but less than my hEDS, POTS, and celiac.

#neuropunk #vent #neurodivergent

[sacreddisease]

um UM apparently you'll be able to turn off flashing during storms in the minecraft java 1.18 update

please tell everyone, this is actually very important, i'm just too excited to process this.

#minecraft #mineblr #actually epilepsy #actually epileptic #actuallyepilepsy #actuallyepileptic #disability #accessibility #dinnerbone asked on twitter for small things that have been bugging you about minecraft forever. guess what i asked for

[crayonmilkz]

the tag flashing was recently blocked from IOS, please use eyestrain instead if you want to still reach IOS users thanks

#epilepsy #actuallyepileptic #tumblr #mushy says #edit after getting 10k notes (OMG haha): if flash warning and all that works then thats fine! #i was not intending to get this many notes thats insane. #i have epilepsy and this is what i thought was best

[sunkern-plus]

topamax is shit imo. it makes you depressed and gives you brain fog if you get seizures or any other neurologic dysfunction i rate it a 5/10 at best and even then on topamax when i had to wean it off because it was affecting my grades i immediately had ANOTHER seizure where i pissed myself that time. fuck topamax worst anti seizure drug ever i’ll never take it again

(though thankfully zonisamide’s much better. thank god for zonisamide, at least for me, controlling my seizures well with literally NO side effects)

#idk about other people's experiences with topamax because i have fle and most people have tle but...that's mine i guess #actuallyepileptic

[thedramaticcorpse]

A one person larp between me and my medication where im the superhero and my pills are keeping my awesome but dangerous superpowers at bay

#epilepsy #actuallyepileptic #epileptic #disabled people #disability #actually disabled #chronic illness #spoonie #spoon theory