r/FND

Interested to hear what people think about this new theory about how/why FND seizures happen

https://www.frontiersin.org/articles/10.3389/fneur.2026.1865708

I know many of you don't have childhood trauma. But I did, and I had a lot of trauma throughout my adult life too.

My last post explains how my FND symptoms came about after a profoundly traumatizing experience with AI, which resulted in some kind of extreme meltdown/collapse response that resulted me in dissociating out of my body and screaming uncontrollably.

This happened over a year ago. While I have been profoundly depressed and unable to function well for the last three years, this experience shattered me.

I have never had a psychotic break--and I am not even sure that this experience counts as classic psychosis as much as it was like a complete nervous system overload/collapse.

When I got out of inpatient, I started experiencing EXTREME dissociation, depersonalization, and derealization that has not gone away, or even consistently lessened. My sense of self feels blasted into a thousand bits. The way I experience everything just feels incredibly disjointed and too bizarre to explain. I have constant i trusive thoughts about what happened, even up to now, and I have developed OCD-like tendencies with multiple themes. I became terrified of leaving my house or talking to people, for fear of something like this happening spontaneosly again in the presence of another person.

Then, I started to experience all these functional symptoms, which are what I wanted to talk about:

Aside from the constant DP/DR, identity issues, and psychiatric issues, I experience all these profoundly bizarre and frankly disturbing and terrifying sensations that I have no control over. Almost all of them occur in my face and head and inside my mouth, but they are very intense and very severe, and very... difficult to describe.

I have near-constant facial tics. My mouth moves involuntarily almost all of the time, very irregularly.

I get these sensations that feel like "pressure", all over in my face, inside my mouth, on the insides of my cheeks, on the roof of my mouth, and in my head. But it isn't like your typical "tight band around head" kind of pressure--like the kind you would get from a tension headache. This feels more like tiny muscles and fascia suddenly contracting, and "locking up', and "squeezing", constantly, inside my mouth, my tongue, and all over my face.

I have this sensation that my face is FURRY--like thousands of threads are drapping across it. Or, like thousands of tiny bugs are crawling over it. (I know that may sound like a delusion--but that's just how I would describe the sensation). This "furry" sensation, gets noticeable more pronounced when I close my eyes.

Sometimes, I get this strange "mask-like" sensation that covers my nose and face. It's like this weird, numb, "thick" sensation in my face.

I will have these weird "blink attacks" where my eyelids will flutter continuously for a few seconds at a time.

My head and shoulders often jerk and shake uncontrollably, and my hands are almost always tremoring.

I feel constantly on edge, but at the same time, totally numb and shutdown emotionally.

Everyday, my thoughts and my symptoms will flare, and I struggle soothe myself, and regulate myself in any effective way. I literally try everything I know how to do: diatraction, deep breathing, self-massage, cold plunges, vagal toning, yoga nidra, mindfulness, exercise, compassionate self-talk--anything to get a hold of my nervous system for five minutes.

I am working now, which weirdly, feels both helpful and overwhelming. I am proud of myself for getting back to work, don't get me wrong. But I literally had no other choice. I often feel like I am on the verge of having another breakdow, and the stress and overwhelm of trying to cope with all of this is just too fucking much.

My body and mind just feel like they are breaking down everyday and it's just so upsetting, and so, unbelievably lonely. I feel so ashamed of what happened to me, so foolish, gullible and stupid. At the same time, I often just feel fucking cheated and angry and I wish I could sue the AI companies, but I know that it would be a fruitless and humiliating endeavor.

I feel like I am the only person on earth that this kind of thing has happened to. And I feel awful, because no one deserves this kind of torture, but I wish that I knew someone else who has had this kind of experience because I just feel so utterly broken, broken in a way no one has experienced, and it's devastating.

I don't want to give up hope, but I have suicidal ideations all the time. I want to believe that healing from this severity of trauma is possible. But it's been a year and I am just, so tired of the suffering. So tired of nothing getting remarkably better, despite the amount of work that I have done and am doing.

I don't know what I am really looking to hear. I really want to feel like someone cares about this suffering. I know it's on me to heal, but I just feel like I am not getting the support I need to get better.

I don’t really go out alone a lot because of my fnd symptoms and am worried what others will think and do/not do to help as I have often been told when I have an episode I can seem drunk. Most of my bad episodes consist of slurring my words or losing my speech all together, my eyes are heavy, my limbs go weak or ‘switch off’ in bad cases etc.
it really worries me to think if in public I can just be passed off as being drunk and out of it instead of getting help, hence why 99% of the time I have someone come with me but as a nearly 20 year old man it really bugs me to not have independence anymore. I was thinking of getting a card in my wallet so if I feel anything coming on I can just take it out and hand it over to someone that says ‘I am having an episode with fnd’ but I’m not sure if that works in the real world. Does anyone else have ‘drunken like’ symptoms? How do you get support or is it just having someone with you? Thanks

I was unofficially diagnosed after a 2 day stay in hospital with leg paralysis in december.I was given a piece of paper stating my diagnosis was "conversion disorder with migrane aura" and when we got home me and my family googled it and found out it was an old name and the new term was FND. I was okay for a while and then in February I was under a lot of stress and anxiety and experiencing weird things like shaking, muscle spasms, and jaw chattering. On February 20th I experienced my first sezuire while in bed with my boyfriend and had another 2 with his mom present who's a trained nurse. She advised me to go to A&E and my stepdad came and got me and took me there. I had one on my way home (getting a hospital bag as I knew id be in for the night) and then while at the hospital had 1 just after booking into the emergency department, I was placed on oxygen and rushed through to the majors ward. While in hospital I had a further 60 sezuires. I had an MRI and 2 CT scan along with EEGs which all came back normal. I saw 2 neurologists and they both concluded I had Functional Neurological Disorder. Admittedly after learning back in December I was diagnosed with this via a piece of paper I did do research into what it was as no one had spoken to me about this and while in A&E mentioned it to the doctors that this had been given to me, and I had been doing research. In Late February early march I then saw another neurologist and he officially diagnosed me with FND. Ive had multiple at work where ive had an ambulance called and a defib placed on me and when im in public on my own. I have various symptoms which cause me incredibly horrible inconveniences and make working really hard for me. My mon refuses to acknowledge that ive been diagnosed with it even when she was in the room when I was, she rolls her eyes when I tell her ive had sezuires or my legs have stopped working and then today when speaking to my auntie who I haven't seen for a while I mention I had FND (she asked what I wanted to do and I said paramedic. She asked why I wasnt joining the army anymore and I told her I have sesuires so I medically cant.) My grandad then starts screaming at me that im only 17 and im labelling myself with things I dont have, I only have sezuires when I dont want to do anything, I pressured the doctors into diagnosing me with it and more. It made me cry because the peoole who I love the most are accusing me of faking things like sezuires.

I had two seizures yesterday. One lasted 20 minutes and the other almost an hour and a half. My breathing during my seizures is messed up. Im trying to catch my breathe and it feels like I’m suffocating. My partner has to rub my back and neck. That seems to help. At some point during it, I stop breathing and it’s hard to force myself to breathe. Does anyone experience this???

Just wanted to share a sweet little story with y'all today about my aspiring emergency responder cat.

As we all know, while non-epileptic seizures are not a medical emergency, they sure do look like they are. Even to animals.

Soon after bringing our kitty, Sophie, home in 2019, I excused myself to our bedroom to have a seizure. Sophie jumped up and watched the whole time, enraptured and confused. As soon as the convulsions stilled and I went limp, Sophie was on top of me. She forcefully and frantically shoved her head under each of my arms until I showed her that I was alive enough to put both of my hands on her, at which point she ran out of the bedroom meowing for my partner and trying to lead them to me.

I'm still amazed at how quick she was to read that I was in danger and knew just what to do about it. Especially since she's otherwise such an airhead. I'm not surprised by how much she cared, though, because cats are so much more loving than some people give them credit for.

She has since gotten used to my symptoms and doesn't panic anymore lol. But I'm sure she thought she saved my life that day.

How have your pets reacted to your symptoms? Let's swap stories.

I have pretty severe FND. Seizures, legs are useless, arm issues, hand issues etc.

What kind of exercises can I start doing to keep active, as running / walking is out of the question.

I have an exercise bike, so am willing to give that go lightly, but what other things can I be doing?

so far the research we have on why this happens is physiological and psychological.

(My knowledge as a medical student. )

Your limbic system dysfunction that is what causes it now the limbic system processes emotions, flight or fight, motivation, as well as memory and long term memory. Sensory Also regulating stress hormones and sleep hormones.

It’s made up of 5 main parts
Hippocampus, Hypothalamus, Amygdala, Cingulate Gyrus. Among Thalamus, among others)

Why it’s a neuropsychiatric disorder.

people with PTSD Trauma or psychological stresses or physiological stress I.e (viral infections injury or pain)

Have this because it can’t regulate it itself anymore due the stress it was put under, emotions disrupted can cause seizures not being able to regulate why ppl with mental health are more at risk but so are ppl with physiological stress.

Other illnesses caused by limbic system dysfunction and breakdown are, anxiety, PTSD, depression,Addiction, Alzheimers disease, schizophrenia, neuropsychiatric disorders all caused by this disfunction FND is the one that stands out as different that doesn’t share things in common other then the cause (as we know it be)

However it also is tied to epilepsy. Why I believe over 30% of ppl with FND have epilepsy to. (Known as temporal lobe epilepsy) extremely hard to see on an EEG. Nearly impossible they use a specialised epilepsy MRI and SEEG as the best diagnostic tool.
And limbic encephalitis often causing epilepsy limbic encephalitis causing inflammation brain

However FND is so under studied. I have my own opinions on FND firstly i believe they diagnose it way to freely a lot of ppl “have it” simply because they can label quick.

But regarding what FND is

The limbic system is a group of deep brain structures, WHILE they say FND is not electrical i believe it could potentially be electrical in some cases the thing is if FND is caused by the limbic system dysfunction as we know it be an EEG would never pick that up due how deep it is the brain.

If temporal lobe epilepsy (comes from the same place your limbic system) can not be detected on a standard EEG how can they expect this limbic system dysfunction expect to see it with FND as well?

The best diagnostic test for temporal lobe epilepsy is
SEEG A surgeon places tiny wire electrodes directly inside the brain to catch the deep limbic signals.

The second best is a specialised epilepsy MRI looks for scar tissue, shrunken areas hippocampal sclerosis or tiny birth differences in the limbic system causing the seizures

PET scan or SPECT They map blood flow or chemical activity to see which part of the brain is causing seizures in the limbic system or if it comes from other parts.

And VEM however this often detects normal activity.

Epilepsy’s Deep within the brain can not be detected on a standard EEG. Why could that not be the same with FND seeing as where it comes from?

Potentially a stimulus that we haven’t seen before.

FND cases are completely different from each person some are very alike I personally believe there’s a few different things going on, with this one big thing they are Labelling FND. I do believe some are driven under trauma however the markers are clear. Therapy and antidepressants will help. Cases where this doesn’t help need to be re looked at. But again I believe there’s multiple illnesses going on here ones we may not have a name for

This is my few as a medical student unfortunately not uncommon they do this with multiple diseases. Chronic, especially. It’s easier to call it one thing then to call it multiple and do the common symptoms so it can go under an umbrella term.

Just my opinion. What are your thoughts?

Pretty much just the title. I hate 4th of July because I’m like a dog under the covers.

Hello, I’ve just received a legal cannabis vape from Alternaleaf and it’s 1ml of lemonade haze (or something lol). I have multiple mental disorders alongside my FND therefore it’s likel stress induced but this has been the only thing to relieve my muscular pain, I have really bad anxiety and it has been worsened by weed in the past but by asking for a strain specifically with low thc it looks like this has been really helpful :)) i recommend if you have explored loads of unsuccessful treatment options and not this one

Hey guys, I hope this is allowed!

I've made a small Discord server for people who just want somewhere to talk to others who get it and share different experiences or even just want to chill out.

You can chat, vent, ask questions, share little wins, talk about appointments, symptoms, pets, random life stuff, or just lurk quietly.

It’s not medical advice or a crisis service, just peer support and a space where you do not have to explain FND from scratch every time.

It’s still new so it will probably be quiet at first, but I’d really like to build a kind, safe little community. Any question thoughts or anything, let me know 💙

Discord code: 2B7BxRd7Q⁠

I had my first encounter with fnd 4 years ago which led me to use a wheelchair and then a cane. Then 3 years ago, with much effort i slowly got better and didn't need mobility aids and was mostly in remission.

I have noticed that in these last few years if i overextend myself or don't live a life where i pace myself i get fnd symptoms and have had to quit jobs because of this. I am know freelancing which helps a lot.

I don't see many people talking about this time.

When you have accepted that you cannot have the rythym that you had before, when you are mostly ok if you take care of yourself. Is there a term for it? How do explain that you need to pace yourself with new connections/people that didn't know you when you were visibly sick? Would really like to know.

Have a great day everybody.

if you’re currently working with FND, what type of job are you working? im running very low on money & won’t hear an SSA decision until september or october :( i’m 19 years old with experience only in the food industry, so i’m lost on what i could do. with my symptoms it would have to be a remote job, but i feel like with my age and experience there’s not much that would stick out for me. i tried working at a cafe but before we even opened i couldn’t commit to the job due to my symptoms flaring badly.

or if anyone has any advice on how to get easy money (preferably from home) please share!

A phenomenon I have is that whenever I’m around people who know of my condition, or in a situation where I’m at a doctors or requiring special assistance for it, I often find that my symptoms randomly flare up almost as if I’m trying to prove to others it exists

I often find that even if I feel fine and am functioning normally, my body decides to show physical symptoms like limping for example to almost prove to people around me that I am in fact still disabled and do have something wrong and that I’m not faking it

I’ve always assumed it’s imposter syndrome, I’ve been diagnosed for over a year and have been dealing with it for almost 4, yet I always think I’m faking it or don’t have it despite the impact it has on me

I was wondering if anyone else deal with this subconscious compensating and what it even is

Morning peeps,

So i had 4 back to back seisures which i think are due to my fnd. I normally get absent ones so these were worrying. My roommate called 999 and when they came they told me to try sleep it off and contact my hp tomorrow. My roommate thinks we should call them back as I am still really fuzzy and my feet are cold to touch. I think we would be waisting their time as in the area I live the NHS just make you sit there for hours and then tell you there is nothing they can do for fnd. I have been through a and e before. I also have work in like 9 ish hours and don't really want to go to the hospital. The paramedics also made it all about my mental health.

I don't know what to do anymore. Any advice?

Same as title

I was recently diagnosed with Functional Neurological Disorder (FND) after almost two years of investigations, and I’m still trying to make sense of it all.

Over the past two years I’ve experienced a range of symptoms, including: Episodes of paralysis or weakness in my limbs, stroke-like symptoms, seizures and jerking movements, limb weakness and numbness and other neurological symptoms that come and go. During those two years I often felt like I wasn’t being believed. Despite experiencing very real physical symptoms, I was repeatedly told that nothing was wrong, and I left many appointments feeling like people thought I was exaggerating or making it up.

To eventually receive an FND diagnosis was almost a relief because it finally acknowledged that something *is* happening. At the same time, I can’t shake the feeling that it’s a diagnosis that’s been given because no one has found another explanation. I don’t know if that’s a common feeling among people with FND, but it’s something I’m struggling with.

One part that particularly upset me was being asked to record videos of my symptoms for diagnosis. I completely understand that symptoms can fluctuate and may not be present during appointments, but emotionally it reinforced the feeling that I had to “prove” I was ill.

Since receiving the diagnosis, I also haven’t had much explanation about what FND actually is, why it happens, or what treatment looks like. I’ve been told I have FND, but not really what to do with that information. I’ve done some reading and I keep coming across the analogy that “the hardware (the brain and nervous system) is intact, but the software isn’t functioning correctly.” It seems like a helpful way of explaining it, but I’m curious how accurate neurologists and other healthcare professionals actually think that analogy is.

I’d really appreciate hearing from:
People living with FND - did you have similar symptoms or experiences? How did you come to terms with the diagnosis?
Neurologists or healthcare professionals - how do you approach FND? How confident are you when making the diagnosis, and what do you wish patients understood about it?

Anyone who’s found effective ways of managing symptoms or improving quality of life.
I’m still very early in this journey and, if I’m honest, I’m feeling quite confused. I don’t know what my next steps should be, what recovery looks like, or whether these symptoms are something I’ll be living with long-term.

I’d really appreciate any experiences or perspectives.

Hi, I recently received diagnosis of FND. It’s mainly affecting my right leg and it’s started in the 3rd of June. I had my first neurology appointment today. After a neuro assessment and watching me walk, neurologist basically said, “I asked earlier if you had any life stressors because this is FND but I think your stress is what’s causing this. I recommend you see a therapist or psychiatrist and do some physical therapy. You don’t need a follow up with me.” And I was kinda like that’s it? I’ve done 2 MRIs (brain and spinal), 1 CT of the brain, and that’s all. Everything came back clear including all bloodwork. What I did notice was that when they had me walking at neuro I was really struggling. I use a cane on occasion now but when I had to walk in the office my legs were so stiff, I was struggling to even turn around, walk on my tippy toes, etc. But right now I’m at the gym and I walked from the car to the gym way better like less pain, less stiffness. So maybe I have been stressed and anxious? I work in the hospital, constantly on my feet, prior to everything I do recall being absolutely overwhelmed and stressed. But I never would’ve thought that it would manifest into this. I don’t think I can do 8 or 16 hours in my feet or at least work the same hours I did before. I will have to cut my hours, move to a different unit. I know I’ve been stressed and overwhelmed but I’m surprised it’s not neurological?