#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

[thedeathwitchescats]

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

[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???

[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!!!

[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?

[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.

[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.

[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

[finnslay]

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

[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)

[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