#pnes

[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.

[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!!!

[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.

[feburra]

You all say that I'm valid if I have a conversion disorder, but then you won't listen to me, and bring back "traumas" that I already forgot, and which is definitely not the cause of my disease. You call it hysteria, instead of FND or conversion disorder and my favorite one... "Your illness is just profitable for you!" I literally cut myself because I'm not normal??? Or "You can't be mentally ill." Like bro, I've been having intrusive thoughts for like 4 years. Hell, I can't get up from my bed. What the hell?

[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]

[finnslay]

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

[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)

[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

[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 🤦‍♀️

[lambsearandlavender]

I'm so fucking devastated and angry and scared. I worked my ass off over 2 years of emdr, I went through the period that it gave me near-daily seizures before it got better, and when I was having one only every 4-8 weeks I took a break for a year. I was thinking this summer that I had some things I wanted to work on in emdr again, but I've also been trying to get pregnant since January and been pretty focused on that. I finally just got appointments made about looking into my fertility bc I should've been pregnant by now, which is already sad, but work has been stressing me out and I had about a seizure every week for like 6 weeks and I've been white-knuckling it.

The thing is, I'm now having them daily again, causing my mental health to also tank, and it's interfering with my job which is causing the stress that's probably triggering the seizures in the first place.

But one probable culprit of my infertility is a brain tumor that screws with my hormones, and my neuro wants to put me on a medication to shrink it, but that medication is known for causing severe depression. I surely can't do emdr while I'm on that medication and I'm not sure my job will keep me if my mental health impacts my attendance much more.

But since the seizures have become so out of control, I'm probably just going to have to put fertility stuff on pause indefinitely until they're under control again and... I'm just fucking devastated. I'm having a really hard time accepting it.

[wheelqueer]

able bodied people shut the fuck up challenge (impossible)