#pnes

[sysboxes]

[Text: This system experiences seizures.]

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[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.

[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

[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

[arcticduckie]

Shoutout to people with Functional Neurological Disorder

Shoutout to people with functional tics

Shoutout to people who have dystonia

Shoutout to people with Psychogenic non-epileptic seizures

Shoutout to people with paralysis and or weakness

Shoutout to people with tremors

Shoutout to people who shut down/unresponsive episodes

Shoutout to people who have walking difficulties

Shoutout to people who have numbness

Shoutout to people who have speech problems

Shoutout to people with vision problems

Shoutout to people with hearing problems

Shoutout to people with memory loss

Shoutout to everyone with FND

[hyskenek]

Photosensitivity/Epilepsy warnings for Cloudward, Ho! Episode 1: On High We Go

Since the dropout team hasn't been including them, here are the flash warnings :) Each timestamp is a few seconds of bright flashing as a transition and in between is a vintage newsreel filter that has milder flickering black spots.

2:40-2:58

3:26-3:47

4:06-4:59

5:21-6:49

7:06- 9:15

9:27-12:07

12:19-13:34

13:58-14:51

@dropoutdottv @dimension20official please add appropriate flash warnings !!

[andr3yvishn3vsky]

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

[azucar-skull]

I'm falling behind.

My therapist had to basically explain to me yesterday that people are like machines. Some machines are different models that can do more of one model and/or do less of another model. And the amount of gas it takes to fuel these models and what tasks they do varies. And that I shouldn't be comparing myself to others because my model's makeup is uniquely my own.

I don't know how to handle that breakthrough though so here's a Donnie vent-

Also wikipedia's definition of PNES is HORRIBLY inaccurate so I copy-pasted a Cleveland Clinic article instead. Someone with a wikipedia account, can you get that updated? Thanks.

[luna-drinker]

I remember I was having a seizure at the Mayo clinic and a lady at the front desk actually said "Ma'am, you can't do that here!" like????? Sorry I guess???

[wheelingwithgrace]

Realizing how insanely flawed and horrible the American healthcare system is.

I am STILL advocating for myself.

What’s incredibly disheartening is how quick doctor’s are too slap a label on you instead of simply saying “I don’t know” and continuing to help you.

I am still fighting to be taken seriously by doctor’s when I go to the ER because of having tainted medical records due to previous incompetence.

I recently found out and now have to fix a current issue:

I had a video EEG with a clear tonic clonic seizure (as written in the results) - it was unreadable due to movement artifacts therefore results were inconclusive. Doctor’s took to this as “pnes” because they weren’t able to get a clear answer from it.

Later on, diagnosed me with Epilepsy.

Since I have the previous PNES label, I am accused of “faking” my seizures.

This doesn’t even begin to top the fact that a lot of physicians don’t even know what seizures are beyond their textbook idea of a Tonic Clonic.

It’s saddening, Seizures/Epilepsy are a fairly common condition too and we can’t even get the proper treatment and help.

[mushroommanchanterelle]

I did it. I graduated college today. As of right now, I have a bachelor's in English.

It's a massive achievement. The whole process, my mom kept telling me I'd flunk out. She did everything she could to prevent me from graduating so she could lord my failure over me. She prevented my grandparents from paying for my college so I'd be saddled with debt. She did everything to hold me back, and I still fucking graduated. Despite alcohol addiction, burnout, being afflicted with PNES and arthritis. Despite it all. Despite my mom trying to ruin my life

I fucking did it. I did it. And nobody can say I didn't. And I'm putting it up on the internet for the world to see. I fucking won today.

[anonymouslydisabled]

Having an episodic medical condition means having to write detailed documents for people on what they should do in the event of an episode, walking them through every scenario, having to explain your episodes to everyone whose going to be a recurring figure in your life, wear extremely obvious medical I.D., and constantly try to raise awareness about your condition because ignorance kills.

And that's all just in HOPES that people will use basic common sense. And still your episodes are still handled incorrectly on a regular basis.

[finnslay]

on top of pride month, i am also 4 months seizure free!!

[tallymarksystem]

"you can't have all of these disorders at the same time you have to be lying" if I could have less I would!!!

[sluggishcognitivetempo]

"sends you this post with a soft blanket and zero pressure" 🌼🕊️

if your body sometimes hits an emergency alarm—seizure-like episodes, but EEGs show "no epilepsy"—you might be navigating PNES (Psychogenic Non-Epileptic Seizures). let’s hold space for this:

🌀 PNES can feel like:

seizures without epileptic activity (your brain’s distress code: "overload!!")

trauma or stress stored in your body (even if you can’t pinpoint why right now)

frustration with misdiagnosis ("it’s just anxiety" — but it’s so much more)

guilt or shame (as if you’re "faking," even though you’re not)

your symptoms are REAL. they’re just speaking a different neurological language.

healing isn’t about "stopping" your body’s cries—it’s about listening to them. 🌱 this PNES Workbook offers:

trauma-informed grounding tools

ways to track triggers & early warnings

gentle nervous system resets

[missmamibee]