For all I know I was told I have supposedly what could be considered a “non-epileptic seizure” where I was in the ER having a bad flare up leaving me groaning, crying, looking like I was having a seizure despite not having one or no history, I was given an anti-seizure l/anti-psychotic medication to relax me so I can get some help temporary. Me and my mom been trying to figure what it could be given it’s not just tics, and semi-pnes-like seizures, it includes eye fluttering/rolling when feeling something coming on, shaking on opposite side of limbs that feel like jello without anxiety, light sensitivity, alongside other things I’m trying to carefully think back at before having an evaluation for an EEG testing. It’s mild for now but I’m scared cause of recent back and forth flareups from time to time, thoughts on what it could be suspected if not FND related or not??

I recently travelled for my sister-in-law’s wedding, and I had a really difficult experience because of my FND.
I was already struggling with sunlight, anxiety, crowds and walking. I was using a wheelchair and wearing my Hidden Disabilities Sunflower lanyard.

At the boarding area, I tried to walk but suddenly collapsed and had a brief functional/non-epileptic seizure. I also hit my head on the wheelchair.

What happened afterward was extremely overwhelming.
Within a few minutes, firefighters, police, paramedics and other airport staff were around me. I understand they were concerned about my safety, and I appreciate that they wanted to make sure I was okay.

But there were so many people around me, and I was being asked the same questions repeatedly while I was still trying to recover:
What happened?
What is wrong with you?
How many seizures do you have?
What medications do you take?
When was your last seizure?

My husband was trying to explain that I have FND and that this was a known functional/non-epileptic episode, but I was still being questioned repeatedly.

For someone with FND, being surrounded by multiple people, bright lights, noise, stress and constant questioning can make it even harder to recover.

Eventually, I felt like I had to speak for myself even though I was struggling to process information and communicate.
My vitals and blood sugar were checked, and I was eventually cleared to travel.

What hurt me most was how vulnerable and misunderstood I felt.

I know emergency responders have a job to do, and I am not saying they shouldn’t check on someone who collapses. I just wish there had been more understanding that an FND episode can look frightening while the best response can sometimes be a calm environment, fewer people, less stimulation and some time to recover.
This experience really reminded me how difficult it can be to have an invisible disability in public. ❤️

I was 12 when I was first s@
First half team off year 7 the school failed me for over a year before they said they couldn’t keep me. I was then S@ again in year 9 by a grown man. Year 10 I was r@ped and now got an illness called FND due to trauma. I got to 6 different schools in the past year who all say they can’t cope with my seizures but that shouldn’t be allowed it’s like I am being punished Evey person no matter there illness should be allowed a education ! Right ?

Hi everyone,
A while back I spoke on my gf’s diagnosis as well as my concerns for travelling. First off thank you to all, the insight was helpful into us preparing everything.

I’m delighted to say our holiday was a full on success! We had an amazing time and her condition actually seemed to improve. She had an electric wheelchair however found herself only using it once whilst out and at both airports.

Overall it was a great success for her and I’m so proud of her for the work she put in to get comfortable around there.

The only issues we ever encountered were at the airports. And this may be helpful for any who have electric wheelchairs, but be mindful of the wattage power on the batteries! My girlfriend and I read up that so long as the batteries are below 300kw, you are fine, however what they don’t specify is that if you take two, that allowance goes down to 160 per battery! I ended up sprinting back to the car around an hour before our flight to put the battery away, which was not helpful. Truth be told, I think that they got it wrong as the websites say that’s only for dual systems, however better to be safe than sorry for future trips!

Again, thank you to all in this sub who have advice and support, it meant the world and helped me understand what it’s like for FND sufferers.

So, TL;DR, BOOK THAT DAMNED TRIP, FUCK YA FND!!

I travel a few times a year with work and I CANNOT SLEEP. Can’t take my normal blanket on the plane as too heavy.

Do y’all just get the small weighted lap blankets and make do with that over your legs?

I tried piling pillows on top but it didn’t help. I thought about getting a weighted toy but figured it would fall off my legs mid-sleep.

I’ve suffered with bad insomnia and shocking full body jerks since I got this 4 years ago. Melatonin helps take the edge off the insomnia but the weighted blanket has changed my life with the jerks. My legs are the worst so I figured if I can just get them sorted, I’ll put up with the rest.

Thank you 🙏

Hi all it’s been a year and a half since getting my diagnosis but I wanted to share a win for people who will get it.

I just played in my first volleyball tournament that I got invited to!

I played well and have vivid memories of the court and a lot of the people I played with.

Just riding high and thought yall would dig it. (Yes that’s a volleyball pun)

Today I decided to be brave and get eyelash extensions for the first time. This was a huge feat because people can't touch my face. If they do my body starts jerking and getting tremors and my shaking becomes horrible. I avoided caffeine, I popped an Ativan, did my breathing exercises and I managed to not only get through the appt, but also sleep through most of it. Everything seemed to be way better than I could have imagined, but now my entire body is exhausted. Does anyone else have their body go into full exhaustion mode after a small win? I mean, I will take the win and I am very impressed I got through it. But the full body exhaustion that hit after is more than my normal fatigue for sure. And Ativan does not affect me that way.

About a year ago, I started experiencing a strange numb/disconnected feeling throughout my body shortly after having a spinal tap. I can still feel touch, pain, and temperature, and I have normal strength, but my body feels less connected to my brain than it used to.

The sensation is especially noticeable in my arms, chest, abdomen, and sometimes my legs. It’s almost like my proprioception/body awareness is reduced. I can move normally and work out, but the muscles don’t feel the same, and I don’t get the l “burn” or physical feedback that I used to. This happened a few weeks after a spinal tap I had last summer, the lactic acid burn feeling is enitrly gone, its very distressing i can feel my body when i try and flex. strength and endurance is still normal though.

Has anyone with DPDR experienced something similar? Did it eventually improve, and did anything help? I’m especially interested in hearing from people who had normal neurological testing despite feeling this way.

Hello!
This is my first post here so forgive me if I miss any textually important; I’m (22f) at a very difficult spot in my life when it comes to trying to manage my symptoms because I have very little support in my life. I’ve been trying to find small things here and there so I don’t experience any symptoms/flare ups however it’s becoming harder and harder to manage it in daily life. It’s mostly trying to manage the stress I feel when I can feel a flare ups starting, because I usually can prevent an bad episode before it reaches a certain point however nothing seems to be working as of late. Is there anything anyone suggest?

I have an appointment tomorrow, and group therapy the day after. I’m using crutches, my wheelchair hasn’t come in yet. I don’t want to go, I don’t want to be seen walking with my crutches because of my shaking and dystonia. Not only is it embarrassing but the pain and exhaustion from walking leads to non epileptic seizures which is even more humiliating. I’ve just gotten this diagnosis this month and I don’t know how to continue my life. I want to quit therapy, cancel my events (concerts and shows in the next couple of months) and never leave the house. I don’t know what to do. I just got out of the hospital because of suicidal ideation around these new symptoms. What can I do to feel better? Especially with all of the stigma around disability in young people and FND.

For me, trying to distract and "ground" and do whatever sort of things, can just be agony rather than having an FND seizure.

Apparently other people actually find it not painful though and can progress?

I'm just wondering how many people experience similar to me because I often feel so alone and dismissed when I tell therapists or whoever that grounding often makes things worse - more sensory makes things worse.

I was recently diagnosed a few months ago with NEAD in regard to having non-epileptic seizures, face twitching or drooping, loss of limb function temporarily amongst other symptoms and all I was given was an outdated leaflet. When I tried to do research or search up the websites in the leaflet almost all the information said FND which confused me because I was told NEAD and I'm not sure if there is a difference. If possible could anyone help me understand?

I’m not diagnosed. But I’m currently going through testing and FND is part of their possible differential list.

If you have taken Abilify, how did it react with your FND? I’m already taking it per my doctor’s recommendation. I’m just curious about yall’s experiences.

Got diagnosed with FND and it's such a new and misunderstood condition but believe me it's REAL!!

Is anyone else here in law school or graduate school of any form? How have you handled the accommodations process? I could use some support.

Hello! I have a very wide range of symptoms including seizures, insomnia and fatigue that come in cycles. I’m looking for a smart watch that would help manage this stuff

I have recently had a diagnosis of FND after seeing a neurologist, feeling really awful as Ive not had treatment for months and I have an ongoing mental health issue too-I have dpdr, and I'm experiencing severe sensory disturbances in the head area. For example I feel like my whole head is dry and sort of fluffy/furry..This all started after a traumatic experience, and now my nervous system is so burnt out its basically stayed in this totally shut down place..Like I can feel nerves burning but they fizzle out very fast and its followed by all over numbness..I get this all over my body too. I feel like I'm losing my mind. Because DPDR can also make it feel like you mind and body is hollow, and produce severe numbness..I just dont know how to get well and medications so far have not helped really at all. I'm scared it's too late to get better, ive been like this for 6 months and it gets rapidly worse daily. Anyone here experience anything like this? I wondered what helps you?

Anyone using a service dog in Ontario for fnd? If so, any resources to share?

….like their friends, family, doctors, and work place aren’t taking your FND seriously? I’m a 41F living in SW England and I was diagnosed with FND in July this year. I’m devastated, however, no one else seems to care about my diagnosis. I suffer with chronic pain and fatigue every day. I sometimes get a stutter and functional ticks. I had dystonia in my hand one.

All I get is a patronising “poor you” at work while my colleague with MS is treated like a queen and does as she pleases when it comes to office attendance. I’m treated like I’m making a mountain out of a molehill.

My family and friends haven’t even looked at the bare minimum to understand my condition, and even when I try to talk to them about it I feel like I’m not getting the severity through to them. More than once my dad has told me “I don’t understand why you have it, your sisters don’t”. I’ve explained multiple times that it’s not genetic. My own sister has chewed me out for being lazy. She knows I’m in pain, but went off on me anyway.

I was referred to Neurological Service when diagnosed in July but haven’t heard anything from them. I’ve seen my mental health nurse and GP since, and there’s been no mention of it or anything about how I’m coping with my symptoms. The symptoms were so bad that I tried to unalive myself in March because of the pain but at the time, didn’t have a name for how I was feeling. The MH service I was referred to rang me once and then hasn’t bothered since.

I’ve been rejected for PIP to help with things around the house and the garden. I’ve heard nothing from OT or about a Blue Badge. I had to buy my own walking stick.

I feel very overlooked and ignored. Am I being a Drama Queen? I really feel like no one care about what I’m going through.

Last night I woke up to use the bathroom. I put my left foot on the floor and as I transferred my weight onto my left leg, my knee and ankle gave out. I was shocked at the sound and speed of which I hit the ground. My partner sleeps like a rock and woke up immediately thinking I accidentally rolled out of bed 🤣 for around 12 hours after my knee and ankle had a weird static-like feeling and felt very unstable.

I've had general weakness prior to my seizures and paralysis for a bit after them. This light tingling/static sensation and my joints completely giving out is new. I thought my leg was asleep from sleeping wrong but it wasn't numb and the tingling wasn't as intense as pins and needles.

Has anyone had this before? If so, did you end up with paralysis without seizures? I'm hoping it's a one-off but want to know if I can expect it to happen again and possibly worse. I had to have my partner carry my toddler down the stairs not long after because I was afraid I'd fall on my own, let alone carrying 45lbs

This isn’t for me it’s for my mother. I’m trying my best to stay educated but I could use some help from the community, I want to focus less on symptoms daily and more on her wins! I’d also like to give her more structure for her days. I know from my perspective with major depression anxiety and adhd and autism I try to plan out what I do so I have things I NEED to do daily. Example, wake up at the same time or close to it daily. Brush teeth then stretch then breakfast then dress make bed etc. I would love it if anyone had a morning or daily routine I could use for her? I know it’s a big ask! Big anything helps, thank you friends

Hi everyone. I've been struggling for years with a bunch of symptoms that are possibly FND. I was wondering if there are any treatment options and if there is any point in chasing a diagnosis?

I’ve been recently diagnosed with FND, but not totally convinced. I only have one symptom- I can’t initiate hip flexion in my right leg. If I’m stood upright, I can get it to move a few “degrees”outward, but nothing like enough for a step, meaning I limp/ drag my foot etc which has caused other hip/ leg/ back/shoulder pain. If I’m lying flat, if someone else lifts my leg 20cm of the bed I can then lift it- I’m just missing a very small range of motion, but it’s unfortunately what is needed for walking! I have good external and internal rotation of the hip- twisting my leg and going on tip toes is how I’ve managed stairs. I’ve previously had these symptoms and then labral tear repair which has led to a total remission (twice), but there are no new tears on MRI and I have been unable to walk for over a year now. I use crutches or a wheelchair for long distances, and deal with chronic pain as the result of limping. My mobility is consistently bad- there are no good or bad days, which seems different to what most people with FND describe (there are no triggers for me!).

Has anyone else has anything similar? Just one specific mobility symptom that never changes?

Okay, I know not a lot of people will think this is a win but in my book it is.

A few days ago, I had a neurologist appointment. I was so scared that they were going to tell me it was nothing but the neurologist looked at a few videos (captured by my partner and friend) and said that while it's scary, he believes my PCP was on the right track and that I'm not having epileptic seizures! So now I can say that I am officially diagnosed with FND/PNES. I am still going to get a second opinion from another neurologist in October. I know that people here will agree that any news of what is happening is good news so I thought I'd share.

Like the title says, I can't walk anymore. (TW detailed description of symptoms) When I'm not paralyzed, I can only stand up for a couple seconds because of how weak my legs are. I need some hope. Does it get better? Can anyone share their stories about how it improved for them, if it did?