#pnes

[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

[3liza]

a lot of people INCLUDING DOCTORS are completely unaware of this but it's not that uncommon for people to get so stressed out they will have a seizure, without being epileptic.

these people can experience any of the symptoms of seizure but will get a negative result on the standard epilepsy tests. this is the epilepsy foundation website and is not a bullshit website, this is actual epilepsy experts and advocates saying "you can have seizures from being too sad, too traumatized, or too stressed". unfortunately a lot of doctors will hear a patient report this, test them for epilepsy, and when the tests are negative, stop the diagnostic process there because they just don't know what else it could be or how to help their patient. bad doctors will make a mental note than the patient is hysterical* and/or malingering. terrible doctors will start diagnosing them with personality disorders that will prevent the patient from receiving adequate care later on (histrionic personality disorder, borderline, bipolar, etc). well, it can just be stress and trauma.

but it's pretty simple, sometimes even non-epileptic brains can overload and boil over and trigger cataplexy, muscle spasms, absence episodes, hallucinations, and all the rest of the seizure behaviors. one of the papers I read on Psychogenic Non-epileptic Seizure (lmao PNES) mentioned that diagnosis alone was sufficient to significantly reduce or completely cure a lot of cases, presumably because if you know what's happening to you in a psychogenic illness and why, a huge burden of fear and stress is lifted from the disease process. unfortunately the combination of all these factors (tests negative for epilepsy, caused by psychological stress, resolves when diagnosed) produces an impression of the patient "faking it". this is true of most psychogenic illness because our culture doesn't consider the processes of the brain to be "real", but again, I have to emphasize, this is the official epilepsy foundation website and they have no reason to blow smoke up anyone's ass about this

* they're technically correct, hysteria as a classical diagnosis before it got turned into "she's making it up" documented a lot of these same symptoms, including the "hysterical arch" posture of a patient experiencing a full body spasm seen sometimes in stress seizures

[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!!!

[softmushroomboy]

HELP FUND A DISABLED, TRANS SYSTEM’S SERVICE DOG TRAINING!!

Currently: $2010/2590

our next periodic goal of $2590 is due by August 4th!

If we get $25/day we will be able to reach this goal in time!

This will help us pay for 1 package of 10 school days (this will last us 10 weeks now since Dallas goes 1x week) that is $810, that we have been invoiced and are hoping to pay by august 8th AND a private lesson with our trainers that is $200!

Thank you so much for your continued support. You have no idea how thankful we are to be able to continue Dallas' Service Dog training to be Bryan's service dog. She is his lifeline!

1 package 10 school days = $810 (lasts 10 weeks, we pay at the 5 week mark instead of right when invoiced to help raise more funds in time)

1 private lesson a month = $200

[missmamibee]

[heartnosekid]

hey friends, i wanted to share some things that are going on in my life right now. mostly for possible support, since it is really difficult going through this right now and i wonder if any of y’all have been through the same.

in july, i had three psychogenic non epileptic seizures (PNES) which required me to go to the hospital. they were caused by extreme nervous system stress, i.e. ptsd and panic attacks combined with the fact i was trying to self medicate with cbd and delta 8. super scary, never experienced a fear and strangeness like that before.

since then, i have had like. no full seizures but instances where i felt like i did before the onset of having the three in july.

i am now coming off cymbalta, the second SNRI i have had to come off in the last three years. i am experiencing pretty intense withdrawals and i was wondering if anyone else has had experience with cymbalta withdrawal as well and if anyone could tell me what their experience was like.

essentially my withdrawal symptoms are feeling similar to how the onset of the PNE seizures felt, and i am kind of just. i guess super scared. i have a support system IRL, but regardless of that, whenever i have these symptoms, i feel so alone and isolated. not necessarily in a lonely way, but in the way that i feel the extremest thing is going to happen and no one will be able to help me, if you know what i mean.

so yeah. i’m sorry to vent here, health problems have really been kicking my hind-end in recent years and now the seizures and withdrawals on top of it has really made things more complicated. and i wanted to know if anyone else has any similar experiences, because if someone has shared my experience, it will somehow calm me down. i will be responding to all comments left on this post btw.

as always, i love you all. very very much. if i miss any trigger tags on this post, please let me know and i will fix it accordingly.

- ish 💕

[the-withering-system]

The line between is this a seizure, migraine or tick attack gets fuzzier everyday

(more like, they overlap more and more tbh)

[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.

[finnslay]

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

[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.

[luna-drinker]

When my brain gets a little too stressed

[kesterite]

informational comic abt my main disability, PNES! I've found that little to no one I talk to knows abt non epileptic seizures, so I brought together some information that I would've really liked to see before I was diagnosed.

IMPORTANT EDITS: - conversion disorder is now known as functional neurological disorder and my comparison was oversimplification. FND is very real, and has its own unique struggles. PNES is closely linked to it in awareness and communities. - not all PNES episodes are caused by emotional stress. we still don’t know exactly why that is for each person. - the cause is HEAVILY debated. I just chose the prevailing theory at the time of writing the comic that seems to make the most sense.

[songbird-oracle]

Denying your disabled child a proper mobility aid and then telling them to “use their legs” (knowing legs are a big part of the problem) to manuever a transport chair, when you have a perfectly fine wheelchair you refuse to let them use because “what if your grandmother who never visits needs it” is fucking disgusting. ✌️😌

So now I’ll either buy my own fucking wheelchair, or find a way to convert the transport chair into a wheelchair I can maneuver.

Hephaestus help me 🤦‍♀���

[wheelqueer]

able bodied people shut the fuck up challenge (impossible)

[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

[heartnosekid]

well, friends. i’m sure a good lot of you have seen this post. i was denied today. i have to contact a lawyer and i don't even know how to begin advocating for myself outside of simply contacting the firm an ex-friend of mine used to obtain disability.

if you would rather not read the whole vent, i completely understand. but if you would still like to provide answers or support to me, here are my main issues.

i need advice from others who have been denied disability and have gone through a lawyer to obtain it. i need advice on what to do about getting started with victim advocacy. that's about it, i reckon. i love you all. my dm's are open. you will be blocked if you clown.

and yes, i realize my stim blog is not the place to talk about this. i understand, but this is my largest audience and i feel i would be a fool to not post this somewhere it may be actually received.

tw for mental health talk / long vent under the cut, particularly of the despairing kind, and also mentions of CSA / CSAM, psychosis, and my general disabilities. if this post needs more trigger tags, please let me know and i'll add them.

my whole life i have been treated as if i am not struggling because i can do the bare minimum to keep myself alive. i can survive, but never thrive, and even surviving now has become difficult. i can't feed myself regularly, my guardians do that for me. i can't stand for longer than a few minutes at a time without extreme duress and pain, which makes cleaning, showering, and going out super difficult and beyond draining. i can understand abstract concepts and certain ideas and am emotionally intelligent, but i struggle heavily with understanding money or how government works, particularly when it comes to laws and loopholes. i don't know when i'm "being had", as it were, and others have pointed this out to me throughout my adulthood. it feels as though this entire disability journey has been me "being had". they gave me something to cling on to, the possibility i may be able to receive real help, and it seems as though they basically knew the whole time they were going to deny me again. for the fourth time. i know that is unrealistic but, it does feel that way.

i wrote several full length books when i was a child / young teenager, and had two published. i won't share the titles because i have outgrown what i wrote and find them childish and frankly embarrassing, but everyone upon learning that i have written and had novels published, immediately jumps to the conclusion that i am some kind of self-sufficient, incredibly intelligent and capable person. i have never once been able to effectively take care of myself. without my guardians, i wouldn't be able to manage money, insurance, bills, cars, groceries, among other things. i don't even halfway understand how insurance on anything even works despite having been shown how it works.

i can see something, be "taught" to the best of someone's ability, and i will still not be able to learn. this has been a constant issue throughout my life, and the american public school system has continually helped these issues perpetuate. all schooling has done is teach me how to parrot back concepts and ideas, remember them for a limited amount of time before losing them to the void, and not how to fundamentally understand and learn them or utilize them in daily life. even higher education was like this, and i was not able to thrive throughout my experience with college despite making mostly okay grades (i cheated and lied a lot, okay. i'm not proud of it but i felt i had to get through or i would be severely punished). i had to a sign an agreement that i personally still do not fully understand to "obtain" my associate's degree, and i do not know why despite the fact it was explained to me, in detail. the information has not registered, and i now no longer have anyone that was involved in said agreement to explain it to me. everyone i say this to is like, "what? that doesn't make any sense." and i'm like. yeah. it doesn't, and i have zero ability to explain it to them in a way that makes sense.

i mention my associate's degree because i am sure in some form or fashion it was used against me in the disability process, since i was "able to complete higher education". also it should be noted i did an early college program. also probably has been used against me. also cheated through most of it.

people have always considered my kind of autism to be hyper competent, since it appeared that way when i was a child, despite showing several signs that i was struggling with a math-centric learning disability, called dyscalculia. i have since deteriorated to the point of barely having the knowledge a young adult should have, about how life works financially and honestly in general.

i have extreme fear about what may happen to me without proper assistance. my guardians will be able to take care of me for some time, but after that? that feels like a black hole to me. it doesn't exist nor will it while i am under-assisted, and this black hole fills me with utter despair. i try not to let it permeate my daily life, so as to not dwell in a future that doesn't exist yet and has the possibility for change. but god. it fills me with literal existential dread, and it is becoming so much more difficult to ignore the older i get.

a lot of factors have been used against me my entire life to deny me assistance, and these reasons being yet another factor has really dredged up a lot of shit from my past.

this is besides the point, but i also learned recently that CSAM was made and distributed of me when i was a child and wow. that has hit me in ways i cannot even describe. part of me is like, why was i not allowed to know after the fact, even when i became an adult? i was directly involved. why did no one tell me my abuser was convicted for counts of spreading CSAM, and that they lied directly to the court system about their inappropriate actions with me? i was disenfranchised in more ways than one by more than one person on allowance of my abuser, and i am just now hearing about it. i don't know how to deal and i don't know how to get started with victim advocacy in my area.

but at the same time, whilst being treated as severely more competent than i am, i have also been infantilized relentlessly, by nearly everyone around me. how does this make any sense. i feel incredibly stupid and uninformed and at the same time privy to things about my disabilities others are not, while not being able to effectively communicate it. i feel i am screaming and begging for help, nearly at my wits end with a lot of things, and all of it is reading as "owie booboo" to anyone who could do anything to help. i feel i am falling through the cracks, and i fear having to crawl back up through them. i fear i won't make the trek. i fear i will lose motivation and let myself rot. it feels like no one in a position of power has taken a true effort to really help me and i cannot help or advocate for myself. i am very scared.

on top of all of that stuff, i am withdrawing pretty heavily from cymbalta, experiencing heightened panic attacks every day, PNES (psychogenic non-epileptic seizures), more episodes of psychosis and hallucinating than i'm used to, all of my mental and physical issues are out of control, and now this disability stuff. i also won't be able to see a psychiatrist for...maybe a week or so more, so no bridge meds till then.

these last couple weeks have just really kicked me down. thank you for reading if you got this far. i appreciate you more than you know and i have no idea where i would be without y'all and this blog. i love you all so very much.

-ish