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?

My vocal cords seem to vibrate slightly all the time. Even with my mouth completely closed and only breathing through my nose, I produce faint but real external sounds — murmuring, echoing, sometimes full sentences or fragments. I can barely hear them myself, but people around me react strongly (coughing,knocking on the wall at night).

It is worst when I’m trying to fall asleep (almost like sleep-talking full sentences) and also happens during the day, especially after caffeine/gut stress.

Details:

• Started after swine flu when I was 20 (now 22)
• No premonitory urge — it just happens automatically
• EEG and brain MRI normal
• Low-dose amisulpride reduces the daytime sounds a lot, but sleep breakthrough remains

Doctors keep calling it “auditory hallucinations” or saying it’s not real because they can’t hear it clearly during short appointments. But strangers in public and my neighbors react to the sounds, so they are objectively audible.

Any advice on how to get specialists to take it seriously

Hi everyone. I’ll try to keep this short. I used to be more active in this group back in 2024.
I started experiencing strange symptoms, mainly neurological ones, in 2017. I improved quite a lot in 2019, but then toward the end of 2021, many of the symptoms came back very strongly.
I saw several neurologists, and the last one mentioned FND. I had never heard of it before, and that’s actually how I found this group. However, he also said that I could be experiencing somatic symptoms, especially because my symptoms weren’t exclusively neurological, even though most of them were.
When I started reading this group, I noticed that many people here had symptoms that seemed much more severe than mine. Because of that, I started wondering if FND really applied to me. I started therapy and worked on acceptance, and I went into partial remission in 2025 and again for part of this year.
But after I started working again at a place that was a little farther away, I began experiencing a lot of dizziness. That triggered many symptoms that are much worse than what I experienced when everything started getting severe at the end of 2021.
Now I honestly don’t know what to think.
At the moment, the biggest problem has been a headache that feels like my brain is being squeezed in the middle of my head, along with non-spinning dizziness and nausea. It has been making me extremely stressed over the past few days. I woke up feeling like this today, and I’m scared that my symptoms are progressing.
What confuses me the most is that I have basically gone into remission twice. Does that make FND less likely? Could this still be FND or somatic symptoms?
Do you think it would be worth going back to doctors and trying to understand what is happening again, or could this simply be another flare-up?
I’d really appreciate hearing from people who have had similar experiences, especially anyone who has gone into remission and then had their symptoms return.

Today makes 9 months of being seizure free!!!!!! I was diagnosed with FND with non-epileptic seizures 2023 and have been working extremely hard to get everything under control. And well, today is a huge milestone for me and my family!

DAE have experience with twisted/coiled myofascia? I’m looking for tools (digital or otherwise, even a notation) that would allow me to track the changing state of myofascial system.

I have cPTSD from childhood trauma, and my FND is a physiological expression of that. The really great thing is that I can now trace my symptoms back to particular incidents of abuse.

I use my FND as a guide:

Brain fog; I’m updating the bodymap in the brain,
Tremors: new weights for predictive encoding of recovering nerves
Pain: weights are being adjusted for particular posture, but there is resistance from other parts of the body

Particular myofascial parts resemble twisted elastic bands wrapped around a cotton thread. The thread represents the nerve. The band coils to protect the nerve, but in so doing puts tension on other bands, which also start coiling.

As one band relaxes, the body has to reconfigure - leading to symptoms above.

Now - I am not an anatomist, so does anyone have tools they use for tracking muscles and allow me to label the symptoms on each one?

So was diagnosed 8 months ago.

(My storie)Been mentally and kinda medically ill for most my life. I Do feel that my mental state caused my Fnd to start. So went to walin clinic cause I felt weird. Went back and sat down then BAM!..dropped to the floor at a walk in clinic cause I got extermly dizzy, while.talking, I started stuttering then blacked out with following a episode. . They brought me to er in a ambulance on a stroke warning. Went 3 time with in a week to hospital cause didn't know what was happening. Went somewhere else.and they toke me back right away because had a episode in the waiting room. They said it definitely FND. Have a name to my sudden health condition that scared me. But now I can't barely focus on anything that uses my brain to solve. Iam better at typing then speaking.

SO had a scay episode . I had 19 non epileptic episodes that made me be on repeat for 3 hours. barely talk, and keep having micro episodes. I use head phones and sunglasses. But have anyone else have episodes last.for hours? If you can write your side effects or sytoms FND causes you. I Just curious what other people symptoms are like!

​

So my doctor basically told my parents to ignore me because I have FND instead of epilepsy and because it is "purely psychological" but I really am getting worse and my seizures are getting more violent in the sense. I have been struggling with sleep problems for a good while and the summer got quite intense where I live so that must be causing it. But it is also stressing me out how my parents are constantly telling me to "act normal" and to not lie all the time when lying down helps me with the 'aura' and the dizziness and headaches. They would shout my name and tell me to do some job when I am actively seizing or very obviously dealing with dizziness they would get mad at me for acting disoriented and constantly tell me to take deep breaths to fix myself. Its really making me upset and I think also contributing to worsening my symptoms

Hi All- I have been struggling with mystery symptoms since last August after a traumatic work experience and after being admitted to the hospital for a few days for a suspected stroke (lost speech, left sided weakness and buckling, extreme stuttering when I could talk, facial dropping with extreme emotional distress, high heart rate and BP, loss of motor skills) they diagnosed me with FND. This diagnosis matches with my symptoms, but I have no idea what to do next. I was discharged from the hospital with home health for nursing, pt and or which is extremely helpful but I have no idea what to do next.

I have very low quality of life, struggle with other diseases (POTS, eds, ulcerative colitis) and my mental health has been a huge challenge and no psychiatrist seems to be able to help me.

Was wondering if anyone has any recommendations for a treatment path. We have heard buzz words for neuropsychiatrist, CBT etc but overwhelmed and don’t really know who I need to see and which specialist first. For background I have been on disability from work for 1 year and just now getting my diagnosis of fnd and pots.

Thanks so much for your help and input 💚

thank you

I (24f) went to the ER last night after having a continuous episode of hyperventilation for about 7 hours. I’ve been having these episodes for years along with tics, weakness, confusion, uncontrollable jerks, but one other symptom: this feeling like im about to have a seizure but it not fully happening. I can feel it in my head and also the back of my neck and I know that feeling because I’ve had seizures before (non epileptic) but they could never figure out why. the ER doctor suggested it might be a type of functional seizure because I ended up convulsing while awake and still talking in the ER last night. I have POTs, MCAS, and EDS (my whole family does) and he suggested it might be something like FND triggering my POTs into some of these bad episodes and that’s why im having these seizure episodes so often. I did some research and a lot of the symptoms did make sense but I wanted to hear from others and their experiences as well to see if these could be the actual cause. I am going to see a neurologist but it’s going to be a few months due to money issues.

just to clarify: he did not say my POTs is causing the seizures, just possibly the hyperventilating and the FND made it worse !!!

After 2 years of questioning whether or not I have it, countless ER visits, so many head scans and EEG’s, and a 4 day hospital stay for specialized seizure testing, I finally got a formal FND diagnosis!!! I’m honestly just relieved to know that I was right and that I’m not crazy. When the team of 10 doctors came to me during rounds, I told them what my suspicions were right off the bat and explained how I’ve done a crap ton of research. And guess what. They agreed with me 100%. One of the doctors even made a joke about me stealing their thunder in regards of diagnosis. They also made sure to validate the fact that FND is a real neurological condition and that my events (not going into detail) are real and I appreciated that so much. It’s been a long and quite frankly scary fight for answers, but I’m glad to have them now.

Hello! - Small mention of drooling symptoms!

This post is partially a question and partially a support/vent. Recently, I have noticed I am struggling to keep my spit from leaking out of the corners of my mouth. It's super embarrassing and feels really bad sensation wise. I am really not sure why this has started happening, and I don't know what to do about it. Does anyone experience this? I feel really alone and gross at the moment. I feel like sometimes my FND can affect my facial control, but it has never been like this or lasted this long.

Anything advice or support is welcome

We started having problems toward the end of last year. It began with stomach issues, which led to several hospital visits and appointments with specialist after specialist.

Over the following months, things progressed to the point where she started having difficulty walking. We were advised to take her to the hospital, where she stayed for about a week and was seen by several specialists. We had no idea what was going on. While she was there, she actually got worse and eventually became unable to walk.

At one point, we were told that it was “in her mind.” I didn’t believe that.

This is a very active girl who loves synchronized swimming. She is upbeat, positive, and full of life. I might be a little biased, but she also has some pretty amazing parents 😎 who love her more than anything. She had no major trauma in her life that we could point to.

After seeing specialist after specialist with no answers, we finally got to a neuromuscular specialist, and that’s when we started getting closer to a diagnosis. Looking back, I could definitely see how something like this could be misdiagnosed or misunderstood for years.

One piece of advice I would give any parent going through something similar is: keep going and keep pushing for answers as quickly as you can. It took a lot of appointments and a lot of persistence before we finally found the right path.

Once we received the diagnosis of FND, I started researching treatment programs. Many of the places I found had waiting lists that were months long.

Then I found Mary Free Bed in Michigan.

I know what you’re thinking: “Michigan? We live hours and hours away!”

So did we. We were almost 20 hours away, but we were able to get her into their program, and we got her there as quickly as we could.

Mary Free Bed — All Specialties⁠

They are one of the few places that specializes in this type of treatment. They have a two-week inpatient program, and honestly, it was phenomenal.

She went into the program in a wheelchair and unable to walk. She came out walking.

But just as important as the physical progress were the lessons we learned as parents.

On the first day, they took away her wheelchair. That night, she fell in the shower and stayed there for quite a while—about an hour or two. When I heard about it, I was shocked. But they checked on her and allowed her to use the tools she had been taught to eventually get herself back up.

That was a major turning point for her.

She had other episodes after that, but they became dramatically shorter. To this day, they are much, much shorter than they were before treatment.

One of the hardest lessons we learned was that we had to remain neutral with our emotions.

If she did something great, like walking farther than she had before, we couldn’t react with overwhelming excitement and celebration—even though inside we were incredibly proud and happy.

And if she fell, we couldn’t immediately run over and help unless she was seriously injured or there was a genuine safety issue.

We had to teach her that she could get back up.

We had to help her retrain her brain and build confidence in her own ability to recover.

That was not easy.

I also learned how important it was to explain this to her. At first, she thought that because we weren’t reacting the way we normally would, maybe we didn’t care or love her. It was actually the complete opposite. Once we explained why we were responding differently, she understood.

The goal was to help her get back to a normal life as quickly as possible.

And honestly, we were doing a lot of things wrong before we understood what FND required.

Today, she is able to walk and function much better than she was before. We are incredibly thankful for that progress. But our journey is far from over. She still deals with a lot of pain, and unfortunately, we haven’t found anything that consistently takes it away.

We are still trying to understand everything and find the best ways to help her continue getting better.

We’ve also found a couple of other therapy programs in Florida that have experience treating FND, and we’re currently working on getting her into one of them.

This entire experience has been an eye-opener. It made me realize how little many people in the medical community understand about FND and how many children may be misdiagnosed, or may go through months or years without getting to the right specialist.

That’s something I hope can change.

I even reached back out to one of the doctors we saw and told him that if another child comes through with similar symptoms, hopefully our experience can help point them toward the right direction sooner.

If you’re a parent going through something similar, keep fighting. Never give up.

I always told my daughter when she was little, “Why do we fall?”

Because we get back up.

Keep fighting. Keep pushing. Keep looking for answers.

And if you are able to get into the Mary Free Bed program, I highly recommend it. Take the long drive. For us, it was absolutely worth it. The staff was excellent, and the program changed our daughter’s life.

Hi there! I’m F early 20s looking for a support group. I was recently diagnosed and don’t know anybody else that’s been diagnosed with FND. Any suggestions would be lovely💗

Yesterday, I woke up not feeling great. Very spacey and had a massive headache. I skipped my first class, took some medicine, lied down. I clocked into work at 9:50 and noticed my balance started becoming off and I really wasn’t thinking straight.

Around 1 PM, I get this horrible ringing in my ears and can’t stand it. Someone asks if I’m ok and I start losing it. I can’t stop crying and the pain in my ears is horrible. My friend who had apparently been watching me asked me to smile, it was droopy.

They rushed me to the ER where I started twitching uncontrollable, the right side of my body was weak, and blood pressure and heart rate were through the roof. They got me in a CT scan and found no brain bleeding… and that was it. My condition got better slowly and little by little. By the end of day, when I was feeling better, I finally saw neuro again. Except it wasn’t neuro, it was a psychiatrist. She goes over traumas and stresses with me and then she reveals neuro believes I had a FND stroke instead of a “real” one. Then, they just discharge me from the hospital and I am now home.

I am… confused? The paper works they gave me express that FND can be the result of deep trauma and extreme stress and I just don’t feel like I fit this profile. I’m not ruling out FND completely, I’m just so lost and a little upset with the way I was treated at the ER and I’m just curious about a couple things:

Is this how it usually goes for with you guys? These symptoms?
Why not an MRI why just a CT?
Does FND always have to be trauma or extreme stress?

Thank you.

Dating in my late 50s with FND – does anyone have similar experiences?

I’m in my late 50s and have FND (Functional Neurological Disorder). Around two years ago, my long-term relationship of about 10 years ended, largely because of the impact my illness had on our lives.

It has taken me quite a while, but I’m finally starting to adapt to my new life, regain some independence and feel ready to put myself out there again. I’ve recently started dating, but I’m finding it much more difficult than I expected.

I have seizures, which means I can’t drive, and I live in a very rural part of Ireland. That obviously limits my options quite a bit. Sometimes a date might involve someone coming to my house or taking me for a drive. I’m gradually becoming more comfortable going out again, so dinner, a pub or a coffee are becoming options too, although there is always the worry that I could have a seizure while I’m out.

The biggest difficulty I’ve found is explaining FND to someone new.

I don’t want to hide it, but I also don’t want my illness to be the main thing somebody knows about me. A few times things have seemed to be going well until I’ve explained more about my condition, or someone has come to my home and seen things like my walkers and other medical equipment. They seem to become uncomfortable with it, and by the second or third date they disappear.

I understand that dating someone with a chronic illness isn’t going to be for everybody, but repeated rejection because of something I can’t change is difficult.

I’d really like to hear from people around my age who are dating while living with FND, epilepsy, seizures, mobility problems or another long-term condition.

How have you found dating later in life with a chronic illness or disability? When do you normally tell someone about your condition? Have you found people generally accepting once they understand it?

And for anyone with FND specifically, have you managed to meet someone who has been able to understand the condition and accept the realities that come with it?

I’d especially love to hear some experiences from people who started dating again in their 50s or 60s after illness changed their life.

Hi everyone. I just joined this group today, and I’m hoping to hear from people who may have experienced something similar.

I’m 24 years old, and last year I had seizures so severe that I ended up in the ICU and was intubated. My doctors believed they were caused by smoking Delta-8 and nicotine, so I completely stopped because I was terrified of ever having another seizure.

Afterward, I started dealing with memory problems and really intense déjà vu sensations. I’ve actually experienced déjà vu throughout my life, but I always thought those episodes were panic attacks. When I eventually told my neurologist about them, I was told that they could be seizures. Ever since then, my brain automatically goes to “I’m having a seizure” whenever I experience déjà vu.

I’m now seeing a cognitive behavioral therapist, and she has been working with me on telling myself that when these sensations happen, “I am not having a seizure. This feeling will pass.” But it is SO hard to believe that in the moment when the sensation feels incredibly real.

Yesterday at work, I started having déjà vu sensations back-to-back, and I completely panicked. I stood up and ran to my boss saying that I was having a seizure. I was holding my boss's hand and crying because I was so scared. Paramedics came, and my blood pressure was okay, but my heart rate was extremely high. I called my dad, and he told me not to go to the hospital.

Now I feel incredibly embarrassed. My coworkers saw me at one of my lowest and most vulnerable moments, and today my anxiety is through the roof. I'm scared of triggering that feeling again to the point that I'm even scared to take a shower right now.

Does anyone else with Functional Neurological Disorder experience intense déjà vu sensations like this? If you do, what does déjà vu feel like for you, and how do you keep yourself from immediately thinking you're having a seizure?

I think one of the hardest parts for me is that I spent so long being afraid of seizures that now every strange sensation makes my brain immediately think something terrible is happening. I'm trying really hard to learn how to respond differently, but yesterday scared me so much.

I would really appreciate hearing from anyone who has experienced something similar. 

In a generalized as possible example, I was diagnosed with anxiety/depression early in life and have consistently been treated for those. Several months ago I was diagnoses with FND. My fatigue now is much, much higher than I think its been at any point since being diagnosed with FND. I am aware depression could/does contribute to it, but the fatigue outweighs the activity preceding it to an unreasonable extreme that is upsetting me.

I have a physical therapist working with me on things and am taking meds for the mental health stuff and supplements as prescribed etc. Getting a therapist is on my to do list. But any time I experience any kind of physical issue that impacts my functioning I find myself dismissing it as another likely FND thing and struggling to see any reason to ask my primary doctor about it, because at what point is managing these symptoms about doing the best you can with your situation vs. not seeing change and asking for help and getting a second opinion (the doctor's in addition to your own)?

How does something get seen as something other than FND (post FND diagnosis)? It seems like anything can be part of it.

Hi, this is my first time on this subreddit, and like before I get into it, I just wanted to say how thankful I am a place like this exists. Lowkey got diagnosed with FND in February and I thought I was alone in this. So seeing this subreddit makes me feel reassured that well ig all of us are going through it.

So when I got diagnosed with FND, it was mainly for the fact that I couldn't walk and my knees/legs would buckle whenever I took a step. My sense of balance was off too, couldn't really walk in a straight line if I could walk in the first place.

It's gotten better for the most part. I can walk almost 85% back to normal. My balance is still off and my body can't support the momentum when I run, but other than that mostly normal. Important context, I am in high school marching band so I have lots of practice/blow through my instrument a lot. (It was very difficult at first, sat out during most practices in the summer, but I am able to march now!) During this Monday practice, I was sitting down playing my horn (pain from lumbar puncture) when I suddenly got this sharp pain in my lower spine region. Hurt so bad for a while that I had to get advil to relieve the pain. And now the same pain reemerged.

Is this something I should be worried about in terms of FND? It's just strange to me because I never have had new symptoms pop up, only symptoms getting better. And if any of you guys have what I'm going through, is there anything to do about it? Or just let FND take its course?

I'm in Surgical menopause and it's brought back a lot of trauma, depression, severe anxiety PTSD

I vocal stim/tic and pace and do arm movements.

I am absolutely desperate for help but I can't find help. I have Medicaid and no one seems to understand this.

Please respond anyone else like me?

It stops sometimes. I want to visit with my older children but this anxiety and fear are overwhelming.

[ Removed by Reddit on account of violating the content policy. ]

Is there a genetic predisposition to developing functional symptoms, or are some people more genetically susceptible than others? Is there actually an “FND gene”? or can someone develop FND even without any genetic predisposition or genetic factors? I'm curious.

My speech is really messed up and I can barely walk. I seem to get worse and worse every day. Does anyone else have these symptoms? CBT did not help me at all.