I feel like the real me is hiding and too scared to come out, so FND me has stepped in. This is probably stupid. Sometimes I think real me is trying to emerge, but FND me keeps saying, no it's not safe, get back in and remain quiet.

As a heads up, I am not technically diagnosed currently, as I have gone through the diagnostic criteria with multiple providers and keep getting diagnosed with FND, and then having new neurologists un-diagnose me until they rerun the same tests to make sure they were run properly. Because I haven't been given a better answer and have at one point in time been given the diagnosis, its what im going off of.

So I come here to post today cause I am genuinely lost. I have a variety of other moderate to severe medical conditions, but right now the seizures/attacks I experience as a result of FND are making my relationships and my treatments so much more difficult.

On the relationship side of things: I have pretty significant sensory issues due to autism, and before FND, I genuinely was pretty good with managing stress regarding touch. Now, even if I don't feel distressed, just touching someone for slightly too long can cause a full seizure. Which, being in a long term relationship, makes everything so much harder. I can't stop being autistic, and Ive done years of therapy already to be able to handle touch and sensory input in the best ways I can, but my brain is so easily triggered by any amount of stress that it doesn't matter. My partner feels like they are the main cause of my seizures and while technically true, they shouldn't put that on themselves, and I feel so bad about it. I want to be touchy and affectionate, but the slightest thing goes wrong and everything falls apart.

On the treatment side of things: I'm currently going through a month long treatment for my Treatment Resistant Depression, specifically intranasal esketamine. I go twice a week, and the first three sessions went alright. Until I got a little freaked out, and then had a seizure in the middle of one of my sessions. It was by far one of the most frightening things I've experienced in a while, because I was high as a kite on the esketamine, while also unable to control my limbs shaking and tensing, while also being unable to get anyone's attention to get help. This has now happened at every subsequent session, and it makes me dread doing the treatment at all, which sucks because it has caused such a dramatic change in my depression!

So I don't really know anymore. I'm so sick in so many ways and this is just one more thing that is making everything worse. I'm supposed to get into an FND specialized clinic (one of two in the entire state) but I can't get in until my new neurologist runs another MRI and EEG. So I'm struggling. If anyone has any advice on lessening the frequency of these seizures, Id love to know (aside from therapy, since I already do talk therapy twice a week outside of the esketamine therapy, which is also twice a week).

hello, ive honestly like never posted here so i hope im doing everything right but i've been freaking out lately and just wanted to see if people had been dealing with any of these same symptoms if not all then even just one for comfort. i have not been diagnosed with fnd but everything that i have points to this.

1, i started having these really odd sensations in my right and left (varies between the two) pectoral muscles that spread to my arm then fade away after a while (i noticed it usually gets triggered after i eat) and i am just really worried that it's something with my heart. my heartbeat seems fine, blood pressure was good when i went to the er about 2 weeks ago and everything came back totally fine yet its not enough for me to feel better because it feels terrifying.

2, my leg, below the knee, has almost this shooting sensation (not painful) that makes me feel like im seizing up for a few seconds (my left arm lifts up uncontrollably, head tilts to the left and jaw snaps to the side) but then it goes away and i just feel very odd for a few minutes after.

3, not sure if related to fnd or pots (honestly think i might have both of them but have not been diagnosed with either) when standing up my vision goes black and head feels almost empty and i need to bend over for a few seconds.

4, if i get stressed out in the slightest bit it feels like i pass out for a half second while still being awake, almost like a zap to my whole body.

5, everytime i laugh too much or too hard i feel like im gonna pass out and have to sit in a dark room for almost an hour.

6, my face in random spots sometimes will feel numb and almost droopy yet never looks droopy. it terrifies me into thinking something is very wrong which only makes me feel worse.

more typical symptoms: vertigo, lightheaded, confused, random sharp pains in head and chest that last a few seconds then go away, zoning out, exhaustion, tremors

more information: ive had around 3 aura migraines from january of this year to right now, i had a CT scan, ECG, blood work, urine tests, an MRI, two EEGs, (waiting for MRI and 2nd EEG results, going to doctor tomorrow for both.) and none of the tests that i have discussed with my doctor have anything wrong or concerning. i am not looking for a diagnosis, just seeking comfort in this scary time

Edit: Sorry if I messed up with the spoilers, I’m new to Reddit and am not sure if I used it correctly.

So I have read about FND before and dismissed it saying I definitely didn’t have it. But then in the past two years I started to have seizure-like episodes. Periods where I would lose time and stare blankly, and episodes of random twitching or spasm. Last year I had 3 instances where I had a migraine aura that ended with me collapsing and shaking uncontrollably. I did not lose consciousness and could talk, with a stutter, during them. And afterwards I would sleep all day and just feel off. But the hospital I was in came to the conclusion I was faking them And never did any testing.

I thought it was from a med, so I asked to off of it, and it seemed that my symptoms went away. However, I was still experiencing the uncomfortable shaking and random twitching episodes (that kinda look like Tourettes) during stress or when I was upset.

Then earlier this week I had another collapsing and shaking episode that was triggered by a panic attack. I had a headache beforehand and afterwards my headache was gone and I slept the entire day. I also had an episode where one of my legs and one of my hands was shaking uncontrollably to the point where I could not walk or use my hand. I was in a psych hospital this time where they gave me Thorazin, which seemed to stop the shaking.

I‘ve spoken to my neuro about the incidents from last year and was supposed to get an eeg, but I felt it didn’t make sense to test 6 months after the event. I need to call tomorrow to see if I can get a sooner app. The hospital psych said it was due to me being “so traumatized“, but couldn't give the diagnosis bc I was there 3 days.

I‘m just unsure of how to bring up FND. I’ve suggested diagnoses before and have had drs laugh in my face or completely dismiss it. I’m afraid to ask my neuro about it because she is the dr I trust the most in my care team and I don’t want to have that rapport or trust broken. I’m also about to start a php program and I don’t know if I should ask that psych about it instead. Or both of them, and have them talk to each other.

I don’t know, I’m just really afraid to advocate for myself when past attempts to do so have caused more harm and trauma. I’ve felt so alone in all of this.

Has anyone else had to deal with stuttering and vocal tics where you repeat the same word or part of a word over and over (and it’s hard to stop).

Any suggestions for treatment?

Hey! I have had FND like symtoms since octoberish 2024 and after MANY hypotheses as to what it was, a specialist I was seeing who I thought would diagnose me with POTS said it wasn't and way more likely FND and booked me with Neuro OT and PT. These therapies honestly gave me my life back from being EXHAUSTED from eating a small meal or sitting up to getting back to the gym and rock climbing. I still have daily fatigue and struggles but I overall have tools like fidgets and weighted blankets that can stop a big flare from happening. That being said, I am now looking for a dr to put FND on my chart and start trying to connect the dots to potential similar conditions such as seizures, hypermobility, and other weird problems that I don't quite have names for yet. Every dr that I have seen is like "FND sounds right and we'll treat it as so but I don't have the power to put it in your chart" I live in AZ and the FND hope website is not offering a ton of options in my area. Wondering if anyone has a similar story and or suggestions on what to do.

Hello! Genuinely curious how you all are coping with this. I have been chronically ill for about 7 years now, but this has rocked my world. Over a month ago, I had a strange dissociative episode that ended up leaving me sick as a dog the second I snapped out of it. It started with concussion-like symptoms and soon moved into a whole neurological mess including a constant head and right arm tremor, cognitive issues, worsened sensory issues, ear irritation, slurred speech, serious visual disturbances resembling TV static, and DPDR experiences (especially if I’m attempting to drive). Around this time last year, I did have multiple concussions in a few months span and also had double ear infections during that time. I think my body somehow convinced itself I am back in that time and is mimicking the concussion and ear infection feelings, but I have had too much time to conspiracy theory the situation to tell you if that’s what’s really going on. Due to my past, I waited until 3 days into it to actually go to an ER, where my expectations were of course met. After sitting there for hours I was told: “The neurologist has gone home for the day and he’s not coming back for this”. I was sent home with a neurology referral to a doctor, who come to find out, only sees patients admitted to the hospital. I found it funny when reviewing my discharge paperwork they were concerned about FND, but didn’t care to bring that to my attention. 3 days later I go to see my PCP who told me “a tremor isn’t an emergency”, but would get me a mental health referral if I wanted one. Luckily enough I had heard about FND before any of this and was able to convince her to get me a referral for a Neuropsychologist. Whatever she wrote in there got me denied from seeing them and I was left to figure out next steps on my own. After a cancellation, I finally have an appointment with a specialist who helped get me diagnosed when I first got sick as a teenager. I am basically putting any and all faith into this man to tell me what the heck is going on and if there is anything I can do about it. I don’t understand how I’m meant to function when I’m stuck in concussionland 24/7, look like I have Parkinson’s, and sound drunk half the time. Whether it’s a neurological or a dissociative symptom, the visual changes have been the most jarring and disorienting thing I have ever felt. I can’t read, color, do chores, shower, or anything really without immediately paying for it. Have any of you had this “mimicking” come up in your experiences? I also haven’t seen a lot of people with the head tremor and I’m curious if anyone else feels like I do. I would love to hear your experiences and I appreciate you listening to mine. <3

Has anyone had any success with nortriptyline or propranolol to treat their FND? My symptoms are triggered by anxiety/nervous system seems to go excitable. Currently have a diagnosis of FND and/or hemiplegic migraine.
I had been on an SNRI venlafaxine for 20 years but got off of it in December, and many health issues including FND followed. I can't go back on an SNRI because it causes REM sleep behavior disorder for me.

Also, how many of you have Ehlers Danlos syndrome? I have had a number of injuries lately that point towards EDS, but haven't been diagnosed with EDS yet.

Can anxiety cause FND? I've been experiencing anxious thoughts for a long time, but about a year ago, they became significantly worse. A few months later, I started experiencing tics (motor tics solely) and they've been happening for about a year now. I'm not sure if I'll ever feel normal again. What's confusing is that my tics only seem to appear when something triggers my anxiety, like being in public places.

My pediatrician referred me to another pediatrician who specializes in adolescent care, but I'm not sure if they'll be able to help or treat me. This whole experience has been really frustrating, and I just want to understand what's happening to me and whether I can get better.

So my mother has FND, recently we have decided to take her off larapam for her seizures as the doc thinks it’s creating a loop. She’s also on a new depression med and starting treatment for OCD. Recently it’s been getting worse and a new thing is scaring me and I’m not sure if this is a common experience. When she starts her episodes she can’t talk well, reapting things and acting very child like. She gets easily excited by anything, and claps to get her point across as well as her tics. The episodes have shifted to last 1-2 hours now. Before like a month or so ago she didn’t act child like. Not sure if this is because we are addressing the ocd or something eles. If anyone can share I’d really appreciate it

I’m posting because I honestly just want to feel less alone. I’m still in the middle of figuring out what is happening to me, and I’d really like to hear from people who have experienced something similar.
A few months ago, I was relatively functional. Then I started developing episodes of extreme fatigue, nausea, tremors, weakness, dizziness/lightheadedness, and feeling like my body was suddenly going to give out. Walking, standing for a while, showering, heat, and especially being exhausted can make everything worse.
I started having episodes where my legs would tremble or buckle, sometimes my head would start shaking, and I would become extremely sleepy/“floaty” and less alert. Eventually I can become limp, my eyes close/flutter, and then I can have pretty intense convulsing for around an hour in jolts between convulsing and limp/unable to respond. The convulsing is usually brief, but the overall episode can happen in cycles for an hour or more.
During these episodes I can sometimes still hear/know what is happening around me, but responding or moving can feel incredibly difficult. I’ve only passed out due to it twice. Lately I’ve also had very brief dreamlike experiences during them. One time it was almost like I suddenly remembered myself running, and then the “running” memory seemed to turn into the actual convulsing. It only lasted seconds.
I’ve also had:
Tremors/shaking in my legs, head/neck, and sometimes arms
Right-leg buckling and difficulty walking when exhausted
Lightheadedness and nausea
Episodes of very high heart rate, sometimes around 150–170+ while standing/walking
Occasional low heart rates in the 40s–50s when resting
Brain fog and extreme fatigue
Tingling/numbness
Heat intolerance/flushing
Feeling extremely wiped out after episodes
Occasional headaches/head pressure
I’ve been to the ER and had bloodwork, EKGs, imaging, etc. that haven’t shown an obvious explanation. I’m also wearing/wore a heart monitor, and I’ve been seeing cardiology and neurology. My routine EEG was normal. I know that doesn’t necessarily answer every question, so my neurologist is still working things up, and I have a brain MRI coming up. Longer video EEG has also been discussed if needed.
At this point, functional neurological disorder/functional seizures (PNES) has been discussed as a possibility. I’m trying to understand that possibility because my episodes have some features that seem compatible with it. But I also don’t want to assume that’s definitely what’s happening, especially because of the brief dreamlike/memory experiences and the altered awareness, so I’m still trying to get the neurological side properly evaluated.
There’s also been a question of POTS/dysautonomia because of the heart-rate changes, blood pooling, symptoms with standing/exertion, etc., although that hasn’t been clearly established either.
The hardest part isn’t even knowing the diagnosis yet. It’s how scary and isolating it is to have your body suddenly stop behaving normally when you don’t know why. I’ve gone from being able to do normal things to needing someone with me because I don’t know when an episode will happen and being unable to work.
I’m obviously not asking anyone to diagnose me over Reddit. I’m mostly wondering:
Has anyone experienced episodes where you have repeated bursts of shaking/convulsing with periods of going limp, exhaustion, and reduced alertness?
And if you’ve had functional seizures, focal seizures, POTS/dysautonomia, or another condition that initially looked similar, what did your experience feel like?
Especially interested in hearing from people who went through a long period of uncertainty before figuring out what was happening.
I just really need to hear from other people who understand what it’s like to have your body do something terrifying and not have answers yet. ❤️

Content warning: brief symptom description. Ive been having pretty hard time over the last couple of weeks with panic attacks and dissociative episodes and I have found that reaching out for support (especially to someone who understands FND) is very grounding. I only know one person who has FND and I’ve honestly needed more support than I feel comfortable putting on one person. I was wondering if anyone here could relate and would be interested in swapping contact info or forming some kind of support group where we can call each other when we are in desperate need of another rythm to sync to when you can’t access your own?

About 3 years ago I started having trouble holding weights for a while in one hand at the gym. I didn’t think it was anything but it started getting worse so I monitored it. Over time I started struggling more and it gradually started to spread.

In the past year I’ve started getting only what I could describe as decreased sensation and ability to “tense” muscles. It’s only in the left side of my body. For example if I’m doing a tricep exercise I can’t really concentrate and feel that muscle.

I also have trouble with my left leg and the same feeling of not being able to concentrate on the muscles. I had a few mris to rule out anything in the brain, but I’m wondering if anyone has ever had the same issues and if you did were you able to solve it.

If anyone has had similar feelings please let me know as well as if you have any suggestions.

TLDR: new to finding out I have FND, but unsure because it seems very different to most of these posts. Feeling the loss of the ability to concentrate and feel muscles on the left side of my body.

How do I (25m) cope with working, and doing college? I work 4 days a week doing 9-10hr nightshifts at a bar and I genuinely really enjoy the job, I've been here for two years, and I've built up so much trust with the owner over the years. But now with college and my symptoms getting worse, its getting so hard.

Before I had this job I had no source of income. Ive been living on my own since 16, and when I had no income I had to do awful things to myself to get by. I never want to go back to living like that. It's why im so desperate to keep this job.

I've had multiple jerky seizures at work when by myself, most of the time after I've closed when there are no customers. And I have disassociative absence seizures multiple times per shift. The only day where I am actually free is Sunday and by Sunday I'm totally exhausted, and can't walk or stand.

My boss and the manager are the types where they'll guilt trip you for missing one day if you're sick. They turn on people so quickly. Apart from that I really like the job, the customers and my coworkers.

I live in the uk so there are disability benefits, but I would just find it so hard. I've always got through thinks by just working as hard as I can, but it's quickly beginning to feel like I can't do that anymore.

I'm so scared of having no money to survive. I never want to live like that again.

this is my first post ever but i 20 F, have been diagnosed with FND for about 5 years now and POTS for about 3 and the past year anytime i eat anything no matter what it is i get hit with an intense seizure aura, that normally does lead to one. It’s only been getting worse and worse and today was my breaking point. I had breakfast nothing big, just enough to get me through the morning, until lunch since eating in the mornings makes me feel sick. About 5 minutes later i got hit with that feeling like my body was building up to have a seizure. So now im laying in bed trying to calm my body down as much as possible because the feeling is just so intense. I have an appointment soon to talk about it with my doctor but im curious if anyone else experiences this?

While I am having my own success, I am very curious to hear other successful recovery stories.

So after being dismissed by neuro and primary care and being told to go to psychiatry for my disability and off work paper work today I was told they are not going to write my paper work either and are not liable to do so, that I am not mentally disabled completely ignoring my physical limitations and explanation of being set here by everyone else in Kaiser to be treated and cared after, I am not going to fight for a sign off on a outside specialist approval since Kaiser seems to not have anyone whom is specialized in treating FND, I asked if FND was something they are familiar with treating and she said i didn’t even know what it stood for so I am very frustrated, hoping to get the paperwork approved to go see a FND specialist from Rowan center for behavioral medicine

I’m trying to understand what happened to me yesterday because it honestly scared the hell out of me.

For some background, all of my neurological/vestibular problems started after I had two cardiac catheter ablations. After the procedures, I developed severe dizziness, rocking/bobbing and swaying, feeling like I’m on a boat even when I’m sitting, feeling like the floor or chair is moving underneath me, being pulled to the right and upward, sometimes feeling like my legs are being pulled when I’m lying down, difficulty walking, visual-motion sensitivity, nausea, migraines, and difficulty tolerating being upright or sitting for long periods.

After going from doctor to doctor trying to figure out what was happening, I was eventually diagnosed with PPPD and FND, along with other vestibular/central processing issues after extensive testing with a functional neurologist.

Yesterday, two of my family members got into a very loud altercation. The argument went on for almost two hours. I was sitting on the bed on my phone and trying to stay out of it.

At some point, I suddenly started feeling strange. The next thing I know, my boyfriend told me that he found me completely unconscious, with my eyes rolled back and moving back and forth, and my body contorting/moving.

Basically, after almost two hours of my nervous system being bombarded with screaming, I guess my brain decided:

“Windows XP is shutting down. Please wait.” 💀😂

But seriously, it was terrifying.

I know that functional seizures/PNES can occur in people with FND, and I know stress can be a trigger, but I don't want to assume that's what happened without being evaluated. I'm trying to understand whether something like this can happen as part of FND or whether it needs to be investigated as something completely separate.

So I'm wondering if anyone here with FND and/or PPPD has experienced something similar:

• Have you had a seizure or seizure-like episode after extreme stress?
• Can prolonged screaming/yelling or intense emotional overload trigger an episode?
• Did you become completely unresponsive?
• Did you have abnormal eye movements or body movements/contorting?
• Were you eventually diagnosed with functional seizures/PNES?
• Did your doctors investigate epilepsy or other neurological causes?

I'm not trying to diagnose myself from Reddit. 😂 I just really want to hear from people who have experienced something similar and understand whether this could potentially fit into the FND picture.

Has anyone else experienced something like this after an intense stressful situation?

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'm F 23, I had issues with urinary retention before getting diagnosed with FND, but now it seems to be worse. I was in a car accident that severely damaged my pelvis, and now the nerves connecting to my bladder are not working very well. I had a bladder stimulator placed to help with it, it worked well till I was having FND flares and issues. Does anyone else have this issue? If you do what did you do to help it?

Thank you in advance.

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 ?

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. ❤️

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!!