#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.

[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

[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

[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???

[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.

[andr3yvishn3vsky]

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

[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.

[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!!!

[finnslay]

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

[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

[therapeutic007]

The FND Workbook (Click Me)

[missmamibee]

[seasickzig]

Does anyone else feel like no one KNOWS anything (about PNES)?

I originally posted this on reddit but am also posting here.

I hate PNES so bad. No one says the same information about it and everything people say seems contradictory to other research and/or my personal experience.

“You get PNES from PTSD.” But my PTSD was CURED for two years prior to developing PNES.

PNES is called psychogenic, but it’s the only symptom under Functional NEUROLOGICAL Disorder that is called psychogenic.

“PNES can be cured through therapy!” My PNES started after five years of therapy, three different therapists, and many different types of therapy, including talk therapy, CBT, DBT, EMDR, and ART.

“Once you get diagnosed with PNES the seizures should decrease/go away!” But my seizures didn’t change once I received a diagnosis.

“You shouldn’t take medication for PNES because it won’t be affective (for long).” But medication is the only thing that stops my seizure clusters that can last for five hours straight.

“PNES are caused by stress!” But they also happen randomly, and while I’m relaxed, and while I’m happy. And it’s not just emotional stress either, any physical stress can also trigger seizures, so working out, being too warm, being too cold, or being in pain are all triggers too.

This stupid disorder has taken so much from me, my ability to drive, swim, bathe. It’s dangerous for me to be alone. It’s SCARY for me to be alone.

General care directs me to neurology, neurology directs me to psychology, psychology directs me to psychiatry, psychiatry directs me to neurology.

Will I ever get better? If my PNES are not tied to PTSD is there even hope? When PNES is tied to TBI, or autism, or EDS, or POTS, or some other incurable condition, can the PNES be cured? Do I have to live like this forever? With no one knowing anything?

[andr3yvishn3vsky]

Non-epileptic seizure doesn't mean that the seizure is due to FND or PNES! There are much more conditions than epilepsy and PNES. Stop seeing only white and black, when there exists a gray side.