#pnes

[this-is-seizurism]

The goal of this account is to spread seizure awareness, education, ableism/discrimination of them.

Please feel free to send in asks regarding your experience with seizures and they will be responded to.

This account does take inspiration from those such as @this-is-ableism @thisisparamisia @this-is-audism and all the others that are out there.

Seizures can occur for many different reasons and this account does not discriminate on the reasoning

I’ll be adding links to my educational posts here as they are created.

What is a seizure

Seizure triggers

Seizure Diagnosis

[yrfemmehusband]

It's so funny to be diagnosed with "Pain We Can't Find The Source Of Disorder" or "Brain is Physically Fucked and we Don't Know Why Disorder" or "We Don't Know Why You Have Seizures Disorder" and instead of more research, tests, etc being performed, you're told to get Cognitive Behavioral Therapy. Bonus points if your diagnosis of Exclusion was the 1st-3rd conclusion your doctor came to.

[gooserings]

Art for my fic Blink (posted here)

For @linked-disability ‘s alternate prompt 1: Rare disease/disorder. I don’t think I can even begin to describe how I felt when I saw PNES listed as an example for this prompt. I just knew I had to make something for it.

PNES (psychogenic non-epileptic seizures, sometimes called functional or dissociative seizures) are seizures that resemble epileptic attacks but are caused by psychological distress instead of abnormal brain activity. They are a form of Functional Neurological Disorder. 

It’s a bit difficult to do an art piece that properly showcases PNES, which is why I wrote the fic. But since I’m a visual artist before anything else, I made this animation to go along with it, showcasing what it feels like (for me, at least) to have a PNES seizure. One second it’s daytime, and the next second it isn’t.

[disjournaled-scrolls]

Been unable to go to school since Tuesday as I keep having seizures and don't have a seizure plan, and because of that, if I have a seizure in class they're going to call an ambulance-- which sucks because my insurance is no longer covering any of my fucking treatment because somehow NONE of it is "medically necessary" anymore, so I'll be in even more abysmal medical debt if they call one <33

so now I'm trapped in my house depressed and seizing and unable to attend classes <333

I love America <333

[witcheshollow]

If you feel the need to gift your chronically ill friends things for whatever reason, here is my "starter pack/gift guide"

A pack of their favorite gateorade flavor, great for hydration, tastes good, easy and quick. Body armor, prime, etc are also good options if they dont like gateorade

Some of their favorite powder electrolytes. Liquid IV and drip drop are some good options. There are also the generic brand electrolyte packets at Walmart, I think they taste good. There is also bouy if they like the squeezy ones, i dont but if they do bouy has an unflavored one as well as like 30 different options

Kt tape. Regular, extreme strength, cooling, heating, literally any type of kt tape. They can probably find a use for it. Most ((not all but most)) chronically ill people, at least the ones I know, suffer from some type of joint issues and kt tape is a life saver. On this vein, I would stray away from braces unless you know what joints/muscles specifically give them the most trouble, kt tape is a bit more versatile

Compression socks, there are cute ones on Amazon, Walmart, many small business sell some nice ones. I would go for a higher compression, or at least upwards of 15 mmhg, for the best chance of them being worth it

Temperature devices, im putting these in the same bullet point bc it felt unnecessary to put ice packs and heating pads in different points. Ice packs are really nice for swelling and heating pads are really good for pain. Both are a good option ALWAYS. I will say, the reusable ice packs give you a better bang for your buck than the single use crack and use ones.

Their comfort foods. A bit of an ed tw for this bullet point, but i have noticed quite a few of my fellow chronic illness sufferers deal with an ed, and while it isnt all of us, those who do probably find it a bit extra hard to eat on rough days. So comfort foods/snacks

If they have to take their blood sugar for things, lancets. They usually come in like 100 packs for really cheap, like under 5 bucks cheap. Just check to see the brand of their lancing pen before you buy them tho

Batteries, it sounds weird but stay with me. Do you know how many medical devices I have that require batteries?? MANY. My hr monitor, my glucose monitor, my blood pressure monitor- like bro, a pack of triple a batteries will mean more than you think trust

A weighted blanket/stuffie. Stuffies are cute and easy to carry around, blankets are nice when you need some extra weight

If they have a service animal, an accessory for their vest/leash/collar could be nice

One of those reacher things that grab things for you. I want one of those. When your stuck in bed, cant move, ill, in pain and suddenly drop your mother fucking phone cord off the side of your bed and now you have to MOVE and grab it- 10/10 worst experience. One of those grabby things would be amazing

A migraine cap. I got mine from target but I have seen them at Walmart, on Amazon, weirdly one on depop, some on shein, some at places like tj maxx, etc. Migraine caps are especially wonderful for those days where your shut in your room, blinds drawn, fans off, three ice packs on you in constant rotation, barely mobile and for some gods forsaken reason your blinds wont close all the way so the light keeps catching your eyes and making you want to lose your ever loving shit bc you cant move to fuck with them. And more normal experiences Im sure lmao

If your short on funds, just being there with them, listening to them, watching a movie, body doubling so they can get some help with chores, running errands with them, literally anything so they remember their a human person with human feelings that you love and care abt. Who knows, it might help you feel better too

More than anything, listening to what they want and need is a bigger gift than most think

[endosdonotinteract]

Having Dissociative Identity Disorder is strange because why was I diagnosed with a rare disorder and now I can't live normally without people going like 'omg do you like.. have fictives' or 'im endogenic' or 'did isn't real' or a bunch of misinformation being spread about it.

Like... worry about my seizures rather than if I have introjects or not. And get a fucking job in the real world rather than moderating an 'endogenic' discord server.

[sluggishcognitivetempo]

A Rant About Living With PNES

Let me tell you about the most isolating, infuriating, misunderstood hellscape: living with psychogenic non-epileptic seizures (PNES).

You know what’s wild? Having your body betray you in ways that leave you crumpled on the floor, shaking, gasping, or frozen—only to have people (including doctors) side-eye you and say, “But the tests are normal. It’s just stress, right?”

Just stress.

As if stress isn’t the quiet killer that carves its initials into your bones. As if surviving trauma, anxiety, depression, or whatever else brought this monster into your life isn’t real enough to deserve compassion. My seizures aren’t “fake” because they don’t show up on an EEG. They’re my body screaming what my mind can’t put into words. But nobody wants to hear that scream. They want a quick fix. A pill. A reason to look away.

And the worst part? The gaslighting. From yourself. “Am I doing this for attention? Why can’t I just control it?” Shut. Up. I’m so tired of the guilt that follows every episode. Tired of canceling plans, losing jobs, missing out on life because my nervous system decided today was a good day to play Russian roulette. Tired of people saying, “You don’t look sick,” as if chronic illness owes them aesthetics.

Oh, and let’s talk about “treatment.” Therapy helps, sure, but it’s not a magic wand. Unraveling years of trauma while your body keeps score? It’s like trying to defuse a bomb while blindfolded. And when a seizure hits in public? Cue the panicked stares, the 911 calls, the paramedics who don’t believe you when you croak, “It’s not epilepsy.” The shame is a living thing.

I’m not asking for pity. I’m asking for people to stop conflating “psychogenic” with “not real.” My seizures are real. The exhaustion is real. The fear is real. This isn’t a performance—it’s a prison.

To anyone else trapped in this invisible storm: I see you. I believe you. Your pain is valid, even when the world refuses to map it. We’re not broken. We’re survivors. And someday, the world will catch up.

Until then? Let’s rage, cry, and hold onto each other. Because sometimes that’s all we’ve got. ______

Highly Recommend This PNES Workbook

[felixwhiteee]

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