#non epileptic seizure disorder

[griddleharkbrainrot]

Life would be so much easier if my body didn't hate me

[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

[skeleticcs]

Seizure types

When someone says the word seizure we typically think of someone shaking on the floor unconscious, but there’s actually a lot more to seizures! They’re different for everyone but here are my most common types and how they look on me and (kind of) how to help during certain types of seizures

Absence seizure: An absence seizure is a lapse in consciousness that can last anywhere from 30 seconds to 5 minutes. I’m completely unaware of my surroundings and unable to respond, but I’ll just look like I’m staring off into space. There’s not much you can do to help besides stay with me and make sure nothing bad happens while I’m ‘gone’.

Atonic seizure: An atonic or drop seizure is a brief loss of muscle tone that looks exactly like it sounds, I just drop. Mostly it’s head drops but sometimes my whole body will give out. These usually only last a couple seconds so no need to help much, but be aware that atonic seizures can often be warning signs of a larger seizure.

Partial seizure: During a partial seizure I’m really out of it and unaware of my surroundings. I may still be able to respond to you or walk around but I’m not myself in these moments. The main thing you’d need to do to help is try to keep me in one place and away from anything dangerous. Do not let me wander off as I’m not really conscious and don’t know what I’m doing, which could end with me getting hurt.

Grand mal seizure: These are the types of seizures most people will think about when they hear the word. Grand mal or tonic-clonic seizures are the violent ones that involve convulsions, shaking, muscle stiffness, etc. follow basic seizure first aid for this type of seizure.

[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.

[minaespen]

apparently i'm supposed to mask how i really feel even tho i dont express it at all

how dare i answer "how are you doing" with "not the best"

[finnslay]

"They aren't seizures" what if I punched you? What then?

[neuroticboyfriend]

guess i learned the hard way that repressing my plurality for literal years can end up causing PNES. so here's your warning not to repress dissociative disorders. or plurality in general since I'm not saying this can't happen to non-dissociative systems.

[seasickzig]

Summary is second to last paragraph!

Has anyone else noticed that a lot of the disorders that cooccur with FND are disorders that cause a heightened baseline or heightened dumps of cortisol and adrenaline?

With CPTSD, PTSD, and anxiety you are CONSTANTLY in a state of fight or flight and hyper vigilance. You always have cortisol and adrenaline in your brain.

With Autism and ADHD, they come with sensory issues which can cause stress and even physical pain. Having stress and pain from things every day (tags on clothing, food textures, socks, wind, lights, etc etc) is not normal. And Autistic people are at a higher risk of developing CPTSD and PTSD, too.

For chronic pain conditions, we’re always stressed because our body is under stress. Also while youre in pain your brain releases adrenaline to help you continue with your day and life and cope with the pain. Hypermobility and Fibromyalgia are the two chronic pain conditions I see alongside FND.

I believe that having too much cortisol and/or adrenaline in your system for too long “fries” your nervous system and makes it so your brain can’t talk to your body correctly. It’s not “just stress” like doctors used to believe. I believe FND is caused by basically overdosing on cortisol and/or adrenaline. That everyone has a different baseline of how much they can handle, and once they reach that point, they develop FND.

What do you guys think? Is this already the current understanding of the disorder? This is what I’ve gotten from research bc my neurologist diagnosed me over the phone with no follow up appointments to explain whats wrong with me.

[ethaninthewilde]

quick mental health rant:

(cw: seizures, depression)

first seizure in two months last night. which is fine. it was bound to happen sometime. but it was the night before the first shift i'd had in over a year since they started, when they got to the point of 4 - 5 a week and I could no longer hold a job down. and i was so excited for this fucking shift. my income at the moment is incredibly tight because I haven't been able to work for a year and i'm on study benefits from the government and even just this one, maybe two shifts was going to be so incredibly helpful. i could get my wheelchair fixed. i could finish paying off that surgery. but then i ended up in the fucking ambulance again and had to tell them i couldn't work indefinitely and its just the same thing over and over again isn't it? when does it end? does it ever end? is there even a point in trying to get better when all you do is end up in the same spot?

and it was just the two. two is nothing. two could just be a small blip. but it was 55 minutes and i had to be sedated and put on oxygen and sure that to used to happen pretty regularly but i thought i was getting better. i thought i was getting better and i am so scared of them going back to the way they used to be.

and like. why last night? did i subconciously not want to go back to work? had i stressed myself out over the importance of not fucking up the next day so much that it triggered a seizure? am i making them happen because i like the attention? do i like being able to say oh i'm not working at the moment because i have this disability? am i sabotaging myself on purpose? no. of course not. why would i?? this disorder has fucked up my life: took my job, took my license, took my studies, made me homeless. why would anyone do that on purpose? that makes absolutely no sense. and yet i can't help but feel like. maybe i'm just useless. maybe i did this to myself because i'm not trying hard enough. maybe i want to be like this.

i want to be normal again. i just want to be fucking normal again. please.

[v-tired-queer]

Y'all ever go awhile without having a seizure which make you pretty proud of yourself and then suddenly you get this feeling and you're like . . . oh no

[hahawishmeluck]

i got a walker and a support worker! i need a wheelchair- the little walking i do each day (i wfh) wipes me out with intense fatigue and pain by noon. trying to learn how to not use all my energy in the morning when im excited to have it.

FND is a mindfuck, man. the catatonia. the pain. the seizures all day long. the leg weakness. the falling.

i can’t take a shower without someone checking in on me regularly to make sure i haven’t had an episode in the shower. i have a shower chair too.

idk it’s all just a lot and it feels like it happened all at once even though i don’t think it has. it’s just reached a point.

anyway, you’re not alone, this disease is wild, and consider mobility aids if you need them :)

[griddleharkbrainrot]

Laughed so hard I had a seizure

My day is going great

[thefundisorderdiary]

Feeling a seizure creep up is honestly like my brain is sitting at the table waiting for dinner to be served banging it’s knife and fork going “seizure! Seizure! Seizure!”

[andr3yvishn3vsky]

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?

[thestarseersystem]

Having FND with DID is like watching your body shut down in real time, when you have a particularly bad/heavy switch and you're so pissed off that you can't even be yourself.

Like last night I was absolutely exhausted, I sort of switched when I was gaming with friends and knew my body couldn't hold on much longer. When I got off call with them, I just sort of shut down, switchy and breaking down mentally. While it was heavy and exhausted and angry, I was twitching violently, my head shaking back and forth in bursts, while I felt the stress run through my body. After like five to ten minutes of this, I just was too tired and needed to sleep.

I was fully conscious throughout, but uncontrollably twitchy and exhausted and angry and switchy. It feels like I shut down physically and emotionally and it was so overwhelming. It's so much.

[minaespen]

trying to do this every week 🤭