r/FND

Hi all, my GF was recently diagnosed with FND, and it has been hell for her. So far, doctors have just shrugged at her when it comes to what she can do, she’s unable to eat red meat and potatoes, she has been unable to walk for months and I fear she is reaching breaking point. I’m scared for her mental state, and am starting to fear that nothing I do will help her at all. If anybody has any advice on any of this, please help. I’m begging.

I havent had a sezuire since the 7th of April this year! Thats the longest ive ever gone and im so proud of myself. I was going to be a paramedic student in around a year and needed to start driving but obviously with sezuires you have to be free of them for 6 months and we're hopefully on our way to be at that goal❤️🤞🏻

Hi
Last weekend i was at a nightclub with my partner and some of their friends.
Everything was great at the beginning, i was having fun with my partner’s friends and it was nice (it was in our way to the nightclub).
But, after some minutes in the nightclub i began to feel really bad and i went outside where i had dissociation (i wanted to go outside alone but my partner knows me too well and went outside with me, thanks to them).
After that i wanted to cry and i was like "i’m sorry, I’m ruining the night!" and they literally said "if you want, we can go home".
And i didn’t want to go home! Because i wanted them to have fun with their friends.
At the end, we went home after like 1 hour in the club because my partner said "health before everything" and i’m so relieved i have a partner like them. Who wants me to be okay before everything. (I don’t know if that make me a bad partner, wanted to be the priority of my partner).

I think i know why i had this issues this night.
I have a lot of anxiety in the moment with big changes (i hate changes) and i had my diagnosis (about FND) recently (and i think it begins to affect my brain knowing it’s not psychological).
But also because of the bright light and the very noisy environment in the club (with so many people, that makes too many informations for me at one time).

But i’m still angry at myself because i was able to go to nightclubs before! And for now i can’t!
I hate having FND, my body (and brain) reminds me time to time i can’t have a normal life and that is so frustrating!

Hello all! To give some back story, I met someone, last year on a dating app, who has been battling fnd along with some other severe conditions as the result of a traumatic accident from several years ago. I feel like this is going to be a long post so, bear with me here. I'm going to try to be concise.

They haven't been romantically involved with anyone for about 4 years, and they are reluctant for reasons they can't fully control, at the moment, but they've also made significant strides, when feeling well enough, to begin to fold me into their life.

How do I deal with what feels like constant rejection when they have to cancel our very limited time together because they are not able (often times they say they don't have the social battery)? And also how do I deal with them saying no to me to oblige family even when they don't feel up to whatever they're asking of them. Definitely something more involved than us chilling out and watching a show together.

They do not seem to be understood by their family, at all. They have memory issues and their caretaker even says they can't understand why/how they don't remember things. It makes me sad that I'm not given the opportunity to make them feel more valued and in the midst of them trying to keep peace with their own family I feel as though I'm getting the shaft.

I'm not saying they never make sacrifices to be with me. But how can we make things better? I haven't seen them in 3 weeks and there has been multiple cancelations since then. It's hard not to feel like it's me. And I just really want to be in their presence. 😞 please know that I realize people and life are complicated. I just feel really isolated trying to talk to my normie friends about it because so many people are ableist af and look at things too reductive. I was hoping someone could help to encourage me. I don't want to give up on them!

So last monday the 11th I ended up having a seizure at therapy which turned into 14 seizures in 24 hrs and over 30 in less than 5 days. this left my whole body extremely weak. I stayed 5 days in the main hospital then they transferred me to a rehab hospital 45 min away from home. I’ve been able to bounce back well in my upper half but I’m still not able to walk without assistance.
This disorder is so frustrating because in the beginning nobody here knew what this is. my seizures have been confirmed many time that their non epileptic. It’s exhausting bc there’s nothing we can do. I’m also severe financially suffering and they’re wanting me to get so many accommodations that i’m my insurance might not cover everything.
I’m also unable to see my partner (main support who i live w) I’m thinking of starting a go fund me to help with these expenses but i never ask for help and don’t even know how to start it.
I guess i’m just looking for encouragement/advice and input if i should start a gfm.
Thanks for reading all this if u did🖤

In 2021 I was diagnosed with heart failure, and I called into the GP office to start meds. 2024 I had a stroke and they still didn’t think there was much wrong with me

Hi everyone,

I’ve recently diagnosed with FND by my neurologist/headache specialist because of my symptoms, head ache, mild tremors for both legs, weakness on limbs.

I was wondering if head ache, tightness and numbness is also a symptom?

I’ve had this terrible head ache, tightness and numbness for 4 months. The pain and numbness are there all the time, everyday and the intensity varies. At worst days it feels like it’s about to explode and it doesn’t go away. None of the pain killer meds work.

Also is there any advice to improve my life? I’ve stopped school and had been attending psychotherapy, and been on antidepressants.

24M. In 2018 I cold turkey stopped psychiatric meds after about a week of use:

• Aripiprazole (Zedan)
• SSRI (Flux)
• Alprazolam (ALP)

After that I developed minor body jerks, but over the years I started having head shaking/tremor issues.

My symptoms:

• Head shakes in a “no-no” direction in certain positions
• Worse when sitting straight with my back against a chair
• When slowly turning my head right/left and returning to neutral, my head shakes noticeably even when alone
• Tremor gets MUCH worse when nervous/anxious or in public/social situations
• Lip trembling when smiling + pressure/tension in lips
• Neck/back of neck pressure and shoulder tension, especially when sitting straight

What confuses me is that I’ve seen multiple neurologists and got completely different opinions:

1. (online consultation) He said its Psychogenic Tremor.
2. (online) He said it's Dystonic Tremor.
3. (online w/ Movement Disorder specialist) She said it's all functional movement disorder/somatic.
4. (On-site appointments) He also said it's functional and prescribed me SSRI (which I didn’t take).
5. (Online Neurologist with 35+ years experience) He said it's Essential Tremor.

But it’s not persistent all the time, which is why I’m confused.

I honestly don’t know what to believe anymore because all of these overlap in some ways with my symptoms.

Has anyone dealt with something similar or received conflicting diagnoses like this? I need help thanks.

to give a little rundown, i’m 19yrs old & i’ve had FND for 5 years now. i deal with full body tremor episodes, tics, dystonia in my hands + feet, slow/slurred speech & weakness in legs. in december i lost my ability to walk completely & couldn’t walk without a walker until the end of january.

in april, i started a week long program for FND treatment. that week, my symptoms got worse after every session. it’s been a month and my symptoms have worsened since then. i’m developing new tics, and tremors (when i have episodes) & i’m working with PT to see what can help during full body episodes, but we haven’t found much.

i’m really losing hope at a normal life. ever since i was 9 ive been battling with health issues, yet this has been the worst imo bc it’s so unpredictable. i’m starting work soon & im terrified i might have an episode while working.

i’m just so tired of living this way. i’m tired of not feeling like i have no control over my body. i have barely lived my life without health issues getting in the way. it really doesn’t help one bit that ive been struggling with depression for almost 10yrs now. i have lost all motivation, i have lost all hope at getting better. i don’t know why i have to deal with all of this. there’s so much more i could say, idk i just had to get that out. it’s not fair at all

So I do still go out from time to time, I'm usually in a wheelchair, and because I'm in public I'm twitching like crazy, and I will have a seizure or two. I was joking with my wife I need a point system for when I'm out, based on comments I hear when people see me.

Here is what I have so far:

• "Are you ok?" 1 point.
• "You need help?" 1 point.
• "OMG!" 3 points
• Have them staring at me wide eyed when I come up for air after a seizure: 3 points
• Hearing my wife say "he's fine" while she is talking to someone else: 2 points.

I've been having a slight tremor in my hands when using them, which has been annoying but fine.

But today I realized just how often I have tremors. I was trying to do some arts and crafts for fun, and for the first time in ages I was using a glue gun.

It was very challenging lol

It's still a minor tremor, and doesn't really bother me, it only feels stupid and annoying.

It also happened at day spending a while back, and I felt a bit embarrassed about barely being able to use scissors because my hands kept shaking.

Why do I feel guilty when I can control my FND

I’ve been having recurring episodes for 2 years involving involuntary “locking”/freezing of my body. My hands/arms/posture can get stuck (e.g, fingers crossed, arm stuck in position) and I may be unable to initiate movement. I stay fully aware during episodes and can usually still speak, though movement is impaired. Sometimes I briefly regain control for a few seconds before it locks again. Episodes fluctuate day to day and can last minutes or longer, then resolve on their own. Triggers seem inconsistent, sometimes stress/situations, other times even neutral thoughts. This started after a severe manic/psychotic episode and has persisted intermittently since.

Edit: Sometimes my jaw opens wide and I involuntarily smile in an awkward way or I repeatively say the word 'stay' (it's so annoying but I don't know how to stop it) I also have episodes where I struggle to touch or hold things like my phone, and when I try to hold paper, I may crumble or throw it involuntarily. Sometimes I try to go to the bathroom, and I’m standing there looking at the toilet trying to go, but my brain refuses, so I have to walk back and forth for a while until I can finally go. There are many other odd symptoms I’ve experienced, but including them all would make this post too long. Overall, it feels like my brain refuses to listen to me and my body becomes extremely agitated or I get crying spells when trying to break out of it, even though I remain calm most of the time, it's like my body detaches from me and does it's own thing. It’s very frustrating to deal with.

Anyone experiencing something similar?

Almost every time I lie down my legs jerk every few seconds. This can go on for hours. Some nights it's not so bad and I can sleep but sometimes it's pretty violent. I also have Fibromyalgia and can get really bad leg pain so I need to lie down a lot. I've tried distraction techniques or moving other parts of my body and that will work temporarily as long as I'm concentrating on it. I've tried everything I can think of to stop it. Sitting up works but I physically can not sleep sitting up. Trust me I've tried. If anyone has any tricks or meds that have worked for them, please let me know.

Has anyone had tried taking Selank and Semax? I’ve read good things about them for calming the nervous system. I’m curious

I worried I might have to have surgery on the side of the left leg and the top of the foot, as it has been numb since the end of January. I have a step-gate foot drop/flop, and so far, with PT, it has not improved. The compression socks haven't worked, as I have been wearing them for two months now.

I had trauma in my early childhood and undiagnosed adhd until my late 20s.

As a result to navigate the world I had to become very self aware and I guess hyperware of my body and mind to be able to function within society and survive certain situations.

I was very quiet and would have to think very carefully before speaking also.

This was due to growing up in a family, school, society where people would often (constantly lol) highlight how I was doing things wrong, weired etc. I just wanted to exist in peace so had to adapt.

I feel that made me more subseptable to FND because I already had a brain that was condition to look for danger and pre-empt danger I guess.

Instead of just being a kid, my brain (edit) had to develop heightened ibtrospection.

Has anyone else had similar? Sorry FND (actually understanding the condition vs what I was told) is new to me and trying to make sense of something that I can't.

Edit: I think another thing I was trying to say and just found the words for is

for context: i’m a 26 year old black woman, an established history of TBI (concussion — 2019) & dysautonomia (POTS — diagnosed summer 2025) who began having unprovoked, sudden onset of seizures beginning in October 2025. after tons of dismissal from my local neurologist + emergency department, i was finally diagnosed with non-epileptic seizures secondary to FND after a hospital stay last month to the date & handed the usual packet with CBT as the primary recommendation. although the hospital i stayed at was worlds more helpful than the one back home, the neurology team there still seemed to defer everything to my primary PCP/psychiatrist.

[cw for symptom discussion & brief description of seizures]: >!i typically have full body seizures resembling tonic clonics, with an overall loss of awareness + unresponsiveness, “ictal noise making” & drooling occasionally, and injuries to my lip and tongue during really bad episodes from biting or hitting myself. i also experience brief lapses in concentration & staring spells — kind of like something taking over my body & overriding everything that i can’t do anything about — and seizures during my sleep. my postictal state can last up to 2 days until i’m able to remain awake & i often lose the ability to speak for hours afterwards. my seizures have never been longer than about a minute & a half, and they often occur in clusters when they’re severe, maybe 20-30 seconds apart.!<

since the beginning of my seizures + diagnosis, i’ve noticed other things such as >!cognitive/memory issues, speech issues including stuttering & word slurring, left sided weakness immediately following a seizure (which was noted in the ED notes but not during my actual admission), severe shoulder pain, and i’m completely reliant on my rollator + mostly bed bound these days as i’m beginning to experience trouble walking and staying upright especially on my left side.!< i recently started 100mg of gabapentin TID for possible seizure control (though i had to tell my psychiatrist that it was for anxiety 🫩), have been in CBT for two weeks with a therapist who has experience in FND, and she’s pushing hard for physical/speech therapy for me.

here’s where i’m starting to worry, though — >!i’m beginning to notice that i’m starting to have what i can only describe as “mini seizures”. while laying down especially, typically my leg or my arm will start shaking & jerking uncontrollably, lasting between 30 seconds to a minute tops. sometimes, this evolves into my body shaking, but just the one side, and i’m often jerking to the side with my head or eyes rocking back & forth sort of. this too can last for up to a minute, but nothing more. the thing is, sometimes i’m “aware” that it’s happening but unable to move, speak, or control my body, but sometimes they occur when i’m asleep as my parents have witnessed them due to seizure alerts on our apple watches.!<

my question is: is this something that’s common for people who have non-epileptic seizures with FND? is this an adverse medication reaction? something i should bring up to a doctor? just to clarify, i’m NOT looking for medical advice or a diagnosis, as i know that only a neuro (who takes me seriously lmao) can give me those answers — but i’m moreso looking to see if maybe this is a shared experience or more details to provide & document for a doctor. thank you!

I developed FND last year and it was bad. FND was not explained to me properly, I was told it was just tics and not to watch tic videos and not to Google about it, so that's what I did.

I had no idea of everything else that came with it. In heinsight I believe alot of my FND symptoms were put down to mental health and just anxiety or Ptsd - it was also what I kept getting told and put on medication after medication that gave me awful side effects (I now think the side effects were actually FND). I was in agony for months and months and I couldn't get taken seriously.

Then something traumatic beyond belief happened within the hospital system and I am still recovering from it - I don't know if I ever will.

I short. I have no faith in the medical system, to be believed, taken seriously or that I won't be put through hell again.

I have just started living alone. And after months of having no seizures, I had one and it was different to how it used to be.

I started to feel really off, and ended up on the floor. My eyes were open (always used to be closed) I was paralysed like I could not move my body.. my head (this is hard to describe) shook but it wasn't in the side to side direction it used to be. The after I felt OK for a bit but then became really slowed. Like trying to unpack things and it was like confusing figuring out where something belonged. That's all I really remember from it.

It was scary. I am so alone and this fucking desease is torment.

I have never had an episode alone, looking back they were I think there was a correlation between people become overwhelming talking about my trauma and the stress of trying to get them to stop. So being alone and it happening out of the blue was petrifying.

I also get like pins and needles randomly throughout my body. This isn't new. But it feels like hell and won't go away even when I distract myself.

Sorry about the long novel but I have no one to talk to about it, my trust is shook because there is no one in my life that understands.

My issues started about 4 years ago. I noticed I was tripping and falling frequently while trail running, I had always fallen occasionally, like a few times per year when running, even on roads, but that was always from catching my toe on something. Now it just seemed like I was falling for no reason.

I went to a neurologist and they did a whole work up — MRI, EEG, blood test. All came back clean so they just kinda said nothing is wrong, even though clearly something is.

I still fall a lot while trail running (at least once a week but usually more often), but then I started having issues just walking in public places a couple of years ago. It just feels like my legs don’t work properly, especially when crossing streets or parking lots. I’m only able to walk semi-normally if I’m pushing a cart in a grocery store, or pulling a wheeled bag behind me like I do when I go to work. I can walk normally when I’m walking my dog too, but if I have nothing to hold onto, I feel like I have no stability. The weird thing is, I feel totally comfortable walking on dirt, grass or rocky surfaces even with other people around, but I can’t seem to walk on sidewalks, streets or even indoors unless it’s my apartment or my parents’ house.

I feel like a fraud though because all during this time, I’m still able to run on trails, albeit a lot slower and for shorter distances before I have to hike than I used to a few years ago. I even did 31 miles of hiking/some running last week during an ultra race, though I did use poles for most of it for stability on the rocky terrain. But like, why do I feel ok running and hiking on trails for 30+ miles at a time but can barely walk on concrete or asphalt for short distances without feeling like I’m gonna fall?

I’m in the process of trying to get diagnosed because this really feels like FND but I don’t know if a neuro is gonna take me seriously when I’m able to walk normally in some circumstances but not others. This just feels like it’s ruining my life because I have to avoid doing things like going out to eat with friends because I can’t walk from the car into the restaurant. I’m scared every day I have to cross the street at work. But at the same time, everyone sees me doing these trail runs/hikes and thinks I must be fine. I don’t even know if getting a diagnosis will help, but I’d like to know that there may be treatment options so I can hopefully get back to walking like I did before.

Also to note, a lot of my falling/balance issues seem to stem from being startled by sudden or loud noises. It’s frustrating because I feel like I can’t control my body’s response to hearing something unexpected, and its response often seems to be falling or at least stumbling. That’s why it feels hard for me to cross streets or parking lots because cars will often be honking or just being loud and it catches me off guard.