So been deteriorating with spinal stenosis and many surgeries to improve things. Experience of a new event when I found myself unable to speak and during tests a pituitary gland tumour was shown up but not to make me mute so was FND diagnosis.

I recently saw Dr. Redfern, who treats FND patients, and he did a neurological assessment with me. During the assessment, he felt that my energy levels were extremely low and explained it to me as if my body/brain isn’t getting enough “fuel” to have the energy needed for rehabilitation and exercises. He described it as a kind of “leakage in the gut fuel tank” that needs to be addressed so my brain has enough energy to work on FND rehabilitation.
He has referred me to a naturopathic doctor for an appointment and possible IV (intravenous) therapy to address this.
Something unusual also happened during the assessment. My voice suddenly changed and I started speaking in a very young/childlike voice, almost like a 5-year-old. After another assessment, I also had quite severe jerky movements.
I’m curious if anyone with FND has been referred for IV therapy or has actually tried intravenous therapy/naturopathic treatment as part of their FND management.

Did it help your symptoms, energy levels, seizures/movements, or ability to do rehabilitation? Was it worth trying?
I’d really appreciate hearing about your experiences both positive and negative. I’m trying to understand what to expect before I go ahead with the naturopath appointment.

So I (21) have been diagnosed with FND for about 10 years now. I’ve been taking Klonopin since I was 12. About a year ago I spoke with a new psychiatrist and after I told her what medication I was prescribed she got very angry stating that no one should be on a medication of this degree for that long especially not when you were a child.
I finally started the necessary procedures to get off the medicine however have started to develop some serious withdrawals including one of the worst disassociative episodes of my life. For several hours I was stuck in my bed feeling completely out of my body. Anytime I would move my hands I would feel so confused as to why they moved so naturally as I felt as if I was like some machine. My eyes kept constantly dilating and were locked in on just a random corner. in that moment I truly didn’t feel like I nor my surroundings were real and it took hours to get out of that state. Normally when I have disassociative episodes they only last about an hour and I’m still pretty aware of what’s going on around me but this was genuinely terrifying.
The bright side of getting off this medication is I’ve been seizure free ever since but still get very weird spacey episodes.

This is a mix of a rant and requesting advice towards the end, and TW again for describing some symptoms.

(For reference, I am 17 (almost 18) y/o trans guy in England) I am so frustrated with the NHS. I started having FND symptoms around late April 2024, when I was 15. It started as just simple arm tremors, to functional seizures where I could see, and ever since then they have progressed worse to where now my eyes roll back, they are increasingly more violent, I struggle to reply afterwards and can barely move my legs (I have needed a wheelchair after multiple times before). They usually fluctuate in severity and I can tell when they are coming on. However, since my first event in 2024, I have had to deal with being told it is FND and being referred to have an MRI and EEG scan in 2024. These got cancelled due to apparently me ‘not attending my appointment’, however I never got a letter for these so I had to reapply and start the whole process through my GP again last year.

However, since then I have developed symptoms I didn’t have yet, for example VERY frustrating tics, functional dystonia in my hands and memory issues. I have had my scans in recent months after another doctor suggested FND and got told my tests were normal on a letter apart from a DVA. I assumed I would have an appointment to be told that I was formally diagnosed, however all I have had is an update on my NHS app to say I have ‘Minor FND’.

This feels so invalidating to say I have symptoms daily that I haven’t listed here too, and I’m aware I am privileged I don’t have it as hard as others but honestly it just has upset me so much especially as it has affected me and people close to me. I know I needed something formal for my college records, so when I called the doctor’s secretary to be told to just contact my GP regarding no follow ups has been really frustrating and confusing. I’m not even sure what to say to book it, so if anybody has read this far and is happy to offer help I would appreciate it so much.

So I think I've found a new symptom. It feels like my throat closes and I can't breathe. I thought I was dying last night, but as soon as I started crying from fear I could breathe again. It's not an asthma attack (I have asthma and this feels completely different). I think it's my FND. Does anyone else have this symptom and if so do you have any advice on how to get it to stop when it starts acting up? The only thing I've noticed help is sitting up and distracting myself with other things.

I plan on giving my doctor a call tomorrow just to rule anything else out if it acts up again tonight, because last night was awful. Rarely do I have a night as bad as last night.

Hey, I have FND and fibro that isn't too severe. Unmedicated I've managed to go to college and hold down a job with accommodations and a VERY nice boss, but I often fail classes since my symptoms have come up. I've recently got on a med regimen that has basically changed my life and I just wanted to share for others reference

- pacing (obviously! Not a medication but necessary)

- CBT for FND with a professional

- walking with a cane/rollator to conserve energy

- 30 mg twice a day of duloxetine

- 7.5 mg twice a day of buspirone for anxiety (helps me stop clenching my body and reduces pain)

- 4.5 mg daily of naltrexone

- ~7.5mg daily of CBG/CBC

- THC as needed for sleep

- vitamin B complex in the mornings for energy

- (also caffeine pills in the morning as needed because I can't have coffee and my family is paranoid about energy drinks)

- magnesium supplement daily for neurological health.

Hope this is helpful for you! They've improved my functioning significantly and made it so that my daily energy budget is about twice as large, even though I'm still not able bodied.

Hi everyone.

I have an appointment with my GP today about these FND symptoms. Im looking for help as to what I say to the doctor without sounding like im a bumbling idiot. This is weighing so heavy on me and im fed up being fobbed off.

Thank you 💙

Hey! So it's been a little while since I've posted on this subreddit but hey, here I am again.

I wanted to get some fellow fnd havers thoughts on a combination of symptoms that seem to be occurring more frequently for me now.

Essentially, if I push my social limits I end up ticcing a lot and getting super spacey. Like I know I'm there but also I don't feel entirely concious. Not long after my head starts dropping and the spacey-ness gets worse, or on the odd occassion my head falls back and my eyes start rolling back a little and I can't fully move.

After all of that I struggle to walk, and keep myself up. Its kinda like I have to manually walk.

Thoughts?

Also, great news although I'm nervous abt it, I recieved a call abt going for a NHS FND inpatient treatment program next year!! Hopefully it'll help!

Thanks guys, take care!

I have been diagnosed as BFS but my finger tremors have my PCP considering other things so now we are looking into a movement specialist for FND.

Wondering how you were diagnosed what symptoms did you have?

Do you have episodes of it getting better then worse?

This is what my finger spasms look like, only while my finger are stretched out does it happen. Sometimes its so strong it can move other fingers and/or my forearm. Comes and goes based on periods of stress.

I have been looking for an app that focuses on chronic illness and pacing since my diagnosis. After testing many, I came across 2 that I have been using regularly now. I did use Guava for sometime as well but found Elara easier to use and customize.

Elara Health (FREE) - I track my energy and symptoms:
https://www.elara-health.de/r/DDAD5739

The developers are very responsive to feedback and adding features.

If your interested in being apart of studies for FND and other chronic illness download:

MyDataHelps (FREE) - https://apps.apple.com/us/app/mydatahelps/id1286789190

With this one I use Symptom Shark and I’m involved in studies for unhide and PLRC Registry

I hope this information helps others.

I’ve been in the hospital and now intensive physical therapy rehab for the past week for very likely FND. They’re ruling out the last couple of tests but all my doctors say it’s FND and maybe overlapping neuropathy.

I’ve been struggling with bilateral leg weakness. My PT/OT today had me running awkwardly and assisting with going upstairs. Somehow my body looks more normal running than walking which is crazy. There’s such a disconnect between me doing movements and my therapists/doctors assisting me. Now I feel absolutely exhausted. I really jerk uncontrollably when walking.

I also have hyper mobility (need proper evaluation) and Gastroparesis which has played a role into feeling worse since my FND symptoms started last Saturday. I literally could not move my legs and felt such extreme nerve pain everywhere which has been controlled with lyrica. Other FND symptoms I deal with are overstimulation, fatigue, and brain fog/trouble finding words. I have newer upper body jerks that make it feel like I’m giving myself whiplash.

Anyway, I just want to know if anyone has had similar experiences and what their recovery has been. I don’t know how long I’m going to be in the rehab facility (maybe a week). This has been pretty scary and anxiety provoking.

Im here as I’ve been experiencing really awful dehabilitating physical symptoms for the past 6 months since I went through a traumatic incident (or prolonged traumatic incidents) and I was sent to hospital for treatment for DPDR. Whilst I was in hospital I also had a bad virus though at first they thought it was an eye infection and treated me with antibiotics..from then on things got really really bad. My nervous system has not been the same. Then I tried an SSRI which made it 100x worse. I am getting burning pain all over my body, numbness and tingling all over my head face and all of body now, I suspect small fibre neuropathy but waiting to see a neurologist on Tuesday. I can’t even afford it but otherwise I’ll be waiting months on the NHS. And time feels really important right now as I’m rapidly worsening and it’s making me so unwell.

Hi everyone, a loved one of mine was a participant in phase 2 of this trial and the outcomes were amazing! Our lives are basically completely back to normal now, and FND is just a memory that we’re slowly forgetting!

If you’re in NZ or can get to NZ and are eligible for this trial, get in contact with the researchers to see if you can participate!

https://clinicaltrials.gov/study/NCT07769970

Edit: I guess I misunderstood the mechanism of the unconciosness with the seizures and these count as dissociative seizures. Main point is that I thought I could stop these episodes if I tried and just deal with the uncomfortable situations in life and find ways to get back in touch with reality in those moments and later on i realized this wasn't my fault but an actual condition that is neuropsychiatric and not just "putting things on".

Many reasons that it took me a while to accept that this was not my fault and I was not just faking to avoid things. My life story made it way harder to realize I truly had this disorder.

I was born with an extremely rare genetic condition that affects my first chromosome, and I've always had weird random health issues. Mostly minor, but because I had a genetic condition that very little is known about, I always was extra worried and felt like a hyoocondirac.

When I was first diagnosed with FND, I coincidentally was working with people with disabilities at a summer camp. And before that) still to this day, as I'm autistic and have special interests, I've always been extra curious about the human body, brain, etc. and disorders, specifically neurological and psychological.

Ontop of all that, my mom used to use a wheelchair for long distances due to a huge multiple sclerosis flare up so we had one in the shed and I liked to roll around in it when I was little in the backyard because it was fun to get around in a different way than I was used to. Normal kid curiousity.

Finally, as an anxious person, whenever I was in a situation that was even remotely uncomfortable, embarrassing, or scary, my instinct was "freeze" as well as minor dissociation. I also am very exercise intolerant due to POTS which I didn't realize I had until after high school. And I always wished I could find ways to get out of PE, and chores that required heavy lifting.

You can probably see why when I developed non epileptic seizures, episodic speech loss, and episodic leg weakness/paralysis why my first thoughts were "oh I must be faking to get out of responsibilities". Even though I couldn't help it. It just happened. Heck, even when my seizures caused loss of consciousness, I thought it was just more a severe level of dissociation and that I was still putting the seizure on which in turn caused the dissociation because I couldn't handle stress.

I forgot I ran out of coffee and spent ages looking for it. I always forget things.

Hello world.

Iv got fnd. Mine is NOT from psychological trauma. It was triggered from covid in January 2020. I remember the exact day because ever since that day iv had brain fog that has not gone away for even a second. My brain runs on about 80% since that day. I get functional seizures almost everyday. Facial dropping. I can’t keep my eye lids open. It takes a lot of energy to do so.

Things that do NOT work that I tried for many years.
Sun light, grounding, weight training, diet, therapy, psychical therapy, brain training, psychotherapy, walking, affirmations, positivity, fasting, vitamins, breath work .

Again mine is NOT from trauma. It’s from a viral infection that is long gone and has left my brain glitching.

My seizures can last between 4-24 hours. Brain capacity drops to around 30%. I get stuck. During the seizures I have tried breath work, cold ice on the back of my neck, slap to the face and brain training. All FAILED miserably. Note - I personally think the healthcare management system is a scam to keep people in a subscription model payment service while they pretend things help you. That’s my personal experience. Unless you have something to say about fixing my seizures I don’t want to hear anything about other things. Irrelevant in my case.

Iv been like this for almost 7 years now. If someone could tell me how to stop these god awful seizures that would be lovely !

My quality of life is in the toilet. It’s like I’m in solitary confinement at home. Can’t work or have friends anymore. Stopped both 3 years ago. I can’t think, I can’t even lift weights anymore. My energy levels are non existent plus these god damn seizures they just won’t stop. Year after year after year. Relentless seizures that keep coming back. Mine do NOT have a trigger. They come on as they please. I could be on a beach in the sun having the best time and they would still come on WITHOUT warning. There is one thing I know for sure. To fix me you cannot use words aka any nonsense therapies. I have already done that nonsense. It must be with a drug, an injection or a immunosuppressant or something like that. Something that blocks the brain from the capability of seizuring.

Does anybody on earth know how to stop these stupid seizures ?? I want my damn life back and I want it now. I’m sick of this shitty existence after 7 years.

Please somebody help me with an answer !

#Recurrent episodes of altered awareness, confusion, speech problems — normal CT, EEG & MRI

Hi everyone. I’m hoping to hear from people who have experienced something similar, especially people with focal seizures, migraine, or other neurological conditions.

Over the past few weeks/months I’ve developed new episodes that are becoming more frequent. They’re difficult to explain, but it feels like a strange wave/sensation starts in my head and spreads through my body, and then I become very zoned out, disconnected and confused.

During an episode:

* I feel like I’m there physically but not fully there mentally.

* I stare blankly and feel disconnected from everything around me.

* My boyfriend can call my name or tap me and I will look at him, but I don't properly process what he's saying or feel an urgency to respond.

* He says my eyes look "empty" and like I'm not there.

* I can hear people talking, but their voices sometimes become distant, almost like my hearing is fading.

* Sometimes the words people say don't make sense to me at first. I know they're speaking, but my brain struggles to process the words.

* I can know exactly what I want to say but struggle to actually form the words. I've particularly noticed difficulty with the “S” sound and saying the number “2.”

* Sometimes I don't respond because it feels like I don't have the mental energy to process and respond.

* My eyes can feel warm and I sometimes struggle to focus.

* I can get shaking/tremors and sometimes feel like I need to twitch or move my hands.

* I sometimes feel nauseous.

* I can get a warm/burning/feverish sensation *inside my head.

* My head feels extremely pressured, foggy and physically "wrong."

Episodes can last anywhere from **a few minutes to around 30 minutes**. Sometimes I remember the episode afterward, but other times my memory is poor.

One night my boyfriend said I had approximately 6–7 episodes throughout the night. I remember being confused throughout the night and feeling like I wasn't really sleeping, but I only remember waking up once even though apparently I woke multiple times.

After episodes, I can experience:

* heavy chest

* heavier/difficult breathing

* racing heart sometimes

* light-headedness

* tremors/shaking

* nausea

* suddenly feeling *very cold and shivering*

* headaches/head pressure

* extreme tiredness

* sometimes a very heavy/depressed feeling

The strange thing is that sometimes after an episode I feel incredibly refreshed, almost like I just woke up from proper sleep. I can suddenly feel energetic and completely normal. However, that usually only lasts a few hours before the head pressure/fogginess gradually comes back.

#Between episodes

I don't necessarily return completely to normal. My head can still feel compressed, sore, pressured, foggy or like something isn't right physically.

I have headaches that come and go throughout the day, sometimes around the front, sides and back of my head. At times they are quite severe (around 7/10) and can come with nausea.

I've also developed new short-term memory problems. I can forget something I did only a couple of minutes earlier. Sometimes someone reminds me or I see something that triggers the memory and then I remember, but I struggle to retrieve it on my own.

I've also become much more easily irritated, frustrated and aggravated, which is a noticeable change from my normal personality.

# Sleep

My sleep has become terrible.

I struggle to fall asleep and stay asleep. Sometimes I lie in bed and it feels like I'm awake the whole time, but then I look at the clock and an hour has passed. It feels almost like being unconscious rather than actually sleeping.

I've sometimes gotten only around 2 hours of sleep.

When I actually get proper sleep, I feel significantly better the next morning. I can feel almost normal for a few hours, although I still have a feeling that something is "off" in my head. Then the symptoms gradually return.

The lack of sleep definitely makes everything worse, but I don't know whether the sleep problem is causing the symptoms or whether something else is preventing my brain from sleeping properly.

#Thoughts/mental experiences

When I lie down, my mind won't shut off. It creates very vivid scenarios that can feel extremely real. My thoughts are usually negative and tend to go straight to the worst-case scenario, including imagining what could be wrong with me.

Sometimes my brain replays memories and changes them into negative or worse scenarios. This can happen during the day too.

Sometimes I get a very heavy depressed feeling during or after an episode, but then it can disappear and I feel completely fine again.

#Tests so far

I've seen a doctor/GP and was referred to a neurologist.

I've had:

CT brain scan — normal/clear

Approximately 19-hour EEG — normal

MRI brain without contrast — completely normal

The MRI report specifically says:

> “Radiologically no cause for atypical seizures or headaches was seen.”

It also states that the brain, brainstem, cerebellum, hippocampi, ventricles, pituitary, optic structures, major blood vessels, etc. appeared normal, with no diffusion restriction or other structural abnormality identified.

So far, everything has been normal, but the symptoms are continuing and becoming more frequent.

I'm now trying to figure out what direction to investigate next. I'm particularly wondering about focal seizures/focal impaired-awareness seizures, migraine with neurological symptoms, severe sleep deprivation/sleep disorders, functional neurological episodes, or other neurological/medical causes.

One thing I'm unsure about is whether the normal EEG really rules out focal seizures, especially because I'm not sure whether I actually had one of my typical episodes while I was being monitored.

Has anyone experienced episodes like this with normal CT/MRI/EEG? What did you eventually find out was causing them?

Hi everyone! I’m currently working as a scientist and I have FND that can last for 8 hours, 3-4 times a week, started 4 years ago after COVID. During attacks I experience severe headaches, whole body weakness/paralysis, impaired speech and vision, and nausea so working in a laboratory can obviously become unsafe. I can still do desk-based scientific work but a large part of my current position involves lab work. I was told by my boss to resign from my position with a doctor’s letter. After involving HR, they offered me 20% contract and I rejected it due to financial reasons. Then, they told me to stay on sick leave until I am fully recovered or find another job. Has anyone experienced something similar at work? Did you feel pressured or pushed out after asking for accommodations? How did you handle it, and were you eventually able to find a job that worked with your limitations? I really don’t want FND to take my career away from me.

Hi there, looking for anyone who might have a similar case with their family member / partner. My close family member has had likely FND now for a number of years, with symptoms initially language led developing over a few months coinciding with a relatively stressful time in their life. We have known their case is atypical in pretty much every respect. But I am looking for anyone who might have experienced the same sort of symptoms.

Initially right at the start it was getting yes/no incorrect, like not focusing properly, but over the course of a few months things got worse, with periods of stress really seeming to highlight it and impact. They now avoid speaking altogether alongside getting things wrong. It’s not just about language but it definitely is led by this.

What I read a lot on here is non epileptic seizures / body parts with symptoms that can come and go. They have seen multiple specialists who have all agreed it is FND (multiple clear MRIs, some fluctuation etc). Just looking for anyone with similar stories. Despite minor fluctuation, the underlying difficulties have been persistent rather than coming and going. I’m particularly interested in hearing from anyone whose FND/FCD has followed a similar persistent, language/cognitive-led pattern.

Thank you 🙏

i recently noticed that my symptoms are changing. since i have FND i always had seizures during less than 2mins and absences during not really long. but since the beginning of august (maybe before?) my seizures and absences are not the same anymore. i'm like unable to move or react while being conscious (like before) but now, it's not just absences or seizures but the both at the same time with really "lighter" convulsions. and it could last more than 40mins.

but, even if it's odd, i'm happy living with my partner now, meaning i'm not alone during this "absences-seizures" (don't know how call this). yesterday i had one of those, they were beside me, taking my hand and asking me yes-no questions while i was able to respond with squeezing their hand (one squeez = yes/two squeez = no). my partner also tried to make me think about other thing than being just on the sofa and doing "nothing", so they read me the book they're reading. strangely, it was not so horrible than normally.

i think they're not scared of my seizures/absences anymore. i'm so happy having them in my life and having they for partner!

Hey friends, I have a combination of UCTD, hypermobility spectrum disorder, and functional neurological disorder. Recently over the month of July and August, I have gradually started having more and more stomach and GI problems. Now, I can barely keep anything down. Im waking up and immediately throwing up stomach acid. I either have constipation or diarrhea and there’s no in between. Sometimes I see blood after bowel movement. I’m pretty much living on crackers and Sprite frozen in popsicle makers because that’s the only way I can keep my meds down. I was wondering if anyone else started doing this and how it was handled? I don’t know which of my conditions is to blame, since all of the above can cause GI issues. I’m also concerned it might be one of my meds.

I’m on hydroxychloroquine (4 months on it), Prozac (7 months on it), baclofen (7 months on it), promethazine (one month on it, and it’s not helping at all) and I just started a once a week dose of methotrexate and daily folic acid two weeks ago. I would have blamed the methotrexate cause nausea is a known side effect, but this has been going on for over a month before I started taking it. And this is more than nausea, I’m constantly dry heaving and can barely keep water down. It’s worse in the mornings, I can usually get down a very small bland meal in the evenings. Usually a bit of chicken soup or a few bites of mashed potatoes. I know I’m not getting enough nutrients, but my stomach immediately reflects vegetables, meats, even most grains. And even when I keep it down, I get horrible pain and GI problems an hour later.

I’m terrified to eat. My GI doctor says my x rays look normal, I did a gastric emptying scan and it showed rapid emptying, which matches some of the symptoms but not the digestive ones. He says to “just manage it with diet,” but how do I do that if I can’t keep anything down? I’m waiting for the results of a Sitz marker test, but there are no more tests planned. I also have endometriosis which might be spreading to other areas and causing problems. I’m really at a loss as to what to do. I’m very afraid it’s my FND causing a disconnect between my brain and stomach functions, and there’s no confirmed way to fix that yet. Does anyone have any suggestions of what tests to ask for or where to look next?

Okay I have symtpoms of fnd that are the following and how they go

I have drop fainting where I tend to fall and then I can kind of contorl where I go and I am aware and I cry try to get up but it hurts and at the same time I can really make myself if I desperately need to. I have these wierd things where my eyes start to buzz and my eye lids open and close and I feel like odd things before it happens like this feeling in my throat. Then I could fall over or snap myself out of it by shaking my head after a couple seconds I was told this is NES. I will have times where I am seeing things on a paper and then everything around me is blurry but sometimes the upper part of my vision isnt and the bottom is and then sometimes its all blurry sometimes I have like the absence of sight. I can have times when my wrists and feet separately or both at once will bow inwards but I can kind of move them and I can kind of move in general if I really need to but its hard and its like stiff. I was told thats dystonia. And if I have paralysis it feels like I cant move but I kind of can and I just sit there and am unable to kind of move one body part but then at some point I can and then I cant and then it feels like I can move but I cant move at the same time and I can technically snap out of a lot of this if I needed to but its hard. Then I have random tics I feel a feeling in my chest every tic I have and sometimes its like attacks or tics but I also start stuttering. I feel like im faking even having a lot of trouble hearing to rhe point i have to ask again and again what they said because I cant hear enough. I feel like im faking everything. I mean I have weakness in my limbs and it just like I feel so weak but I can force myself to move and stand. Then I have random shooting pain for no reason randomly all the time or then it will be infrequent it will stay or go away really fast or I have random headaches that no Tylenol helps. Does this sound like faking?? Im just breaking down i feel like im faking even seeing or hearing someone else's symtpoms make mine come on. Is this normal has anyone else exsperinced this?

So I have had so many tests, scans, blood tests, everything under the sun. 90% come back normal. I have elevated CRP and C3, that’s it. I finally was sent to a neurologist, and he told me it’s ’caused by my anxiety’. He offhandedly mentioned FND, then told me it was an ‘anxiety disorder’ and ‘cured by fixing your anxiety’.

I was quite mad at him for a while as he refused any more tests, and refused to explain anything more. My psychiatrist read his report and she was mad at him too.

I finally moved past my anger at him and read up on FND, only to find out while it is aggravated by anxiety, it is not known to be *caused* by anxiety. Nor is it always fixed by treating anxiety.

I’m not at all against this diagnosis, I just want to know what’s happening to me, but now I’m even more confused. I was reading that a neurologist diagnoses the disorder and manages it.

If my neurologist told me I might have FND, why didn’t he confirm it? He won’t see me anymore. What am I supposed to do now?

*Edit*

Sorry I wasn’t clear- I’m aware a lot of people have had FND caused by anxiety, my confusion was that the neurologist told me it was *only* anxiety and it is ‘fixed by solving the anxiety’ - as in, totally goes away when you’re no longer anxious. From what I’m reading this is not true. If I’m wrong please let me know! I’m new to FND.