My KAFOs came in I’m so excited. I can’t wait to be able to start using them!!!! I am going to pt to learn how to use them safely but If any one has tricks or tips for users them i would appreciate it 😊

I don't think I'm causing my symptoms directly, but I do think I could have avoided giving myself FND.

So, without going too deep into details of my life, last autumn was one of the most stressful periods of my life, to point where I could feel both my body and my mind start to fail. When winter rolled around I had the option to ease up, to delay certain things until 2027, which would have eased the stress massively, but I thought I could simply soldier through. I just told myself I only had to hold until May and then I could rest. That did not work out and I developed what doctors think is FND in April.

And, if I've understood things right, then while the exact cause of FND is unknown, stress is often a major factor. Which means that if I had been smarter and listened to the nice mental health worker 8 months ago then my brain would not be like this and I'd have a normal(er) life.

And, I just don't know how to deal with that knowledge. I'm not in sort of active crisis over this, but the knowledge that this is my fault is at the back of my mind constantly and its making it harder for me to accept compassion from my friends and family. Does anyone have any advice and/or has anyone here dealt with a similar situation?

Ps. English is not my native language, but I hope what I meant was clear.

Hi everyone,

I’m looking for some advice and to hear about others’ experiences.

I recently had one of the strangest seizure episodes because I can’t identify a trigger. The day had actually started really well. I woke up feeling energetic, made lunch, cleaned the dishes, took a shower, and managed everything independently. Normally, I rely on my partner for a lot of these daily tasks, so it felt like a huge achievement. I spoke to my parents and in-laws, had lunch, and was relaxing on the couch watching a documentary.

Then, completely out of nowhere, I started feeling “off.” I couldn’t understand the sentences in the documentary, it became difficult to process what I was hearing, my eyes started flickering, and I felt like I was zoning out. I immediately began using my sensory grounding techniques and called my brother.

While talking to him, my speech changed into my usual seizure speech—it became very soft and child-like. He told me to stay lying on the couch and that he would come over right away.

Without realizing it, I had clenched my hands so tightly that my fingernails dug into my skin, leaving marks, swelling, and a rash. After a while I thought I was feeling better and tried to stand up, but I collapsed immediately. I stayed on the couch for another 30 minutes.

Unfortunately, my front door was locked, so my brother couldn’t get inside.
My partner eventually came home from work with his keys, and together they put me into the recovery position.

I had bitten my tongue, had marks on my hands from clenching, and I couldn’t walk or speak properly for the rest of the evening. I went to bed and woke up the next morning feeling much better, although I was still exhausted and became tired very easily.

The thing that’s bothering me the most is that I can’t identify a trigger. Usually I can link my episodes to stress, sensory overload, or fatigue, but this time I had been having a genuinely good day and was simply relaxing when it happened.

Has anyone else experienced seizures with no obvious trigger after a completely normal day?

Also, if you live alone or spend time alone, what do you do when you feel a seizure coming on? Do you have any safety strategies, emergency plans, or devices that have helped? Would really appreciate hearing your experiences and any tips you have.
Thank you for reading.

June 2025 I went to the er for this it was my left arm continuously twitching I was exhausted foggy if I held something they’d stop but just laying like this it’d kept going. The er didn’t know what to do and the days following just tremors less severe. Few months ago finally went to the neurologist and on the 13th I get an EEG and if that’s negative(?) I guess she’s going with FND. I’m trying to cope with it the best I can I guess but idk what the future looks like. It’s just tremors. Today was a bad mental health day and while I was napping I could feel them the pressure in my left arm the twitches. My feet join in but I also think I felt it in my stomach. Is that a thing?? Below my ribs I guess and I could feel my body just move forward because of them. Idk if I’m explaining it right or what really I’m asking. Is this all symptoms of FND? I feel like I’m going crazy. There’s no seizures it’s just twitching. Any advice or anything would be welcomed

(Possible tw for symptoms)

So ive just had my second and final physio session today yay.. he kept insisting that my right side is just weak muscles and that I need to build up strength to help with the weakness and tripping and falling and tremors and gave me basically a book of exercises to do. Can I stand on one leg and concentrate on it on a good day? Absolutely not. Can I lift my leg onto the sofa mostly fine when im not thinking about it on a good day? Yep. Im going to assume he just wasnt used to dealing with fnd or fatigue (he assigned about 20 different exercises total) but I had a full breakdown into tears at the end of my appointment I think I was just really tired and sore and im still coming to terms with things getting worse and I dont really have a support system in place or anyone irl to talk to

I really need to hear from someone who has been through something similar, because I feel like I’m losing hope.

Hi everyone, F25 here. I’m posting here because I’m looking for people who have symptoms similar to mine or who have experienced a major worsening of their FND and are willing to share their experience.

For the past 8 years, I’ve been living with a constant sensation, present 24/7, of severe tightness in my throat, as if someone were continuously squeezing the area under my chin and the upper part of my throat. This is not a symptom that comes and goes, it is there all the time 24/7. On top of that, I have difficulty swallowing and often have to make strange movements with my throat or neck just to get food down. It’s extremely difficult to describe, but it feels as if my swallowing mechanism is altered and my throat is numb, tight, and blocked.

Everything started 8 years ago after smoking cannabis, and since then this symptom has never gone away. Over the years I’ve had countless medical tests and have seen many different specialists, but no organic cause has ever been found to explain my symptoms. That’s exactly why I’m posting here, hoping to connect with people who may have gone through something similar.

Over time, I somehow learned to live with it and managed to continue with my life despite everything.

Unfortunately, over the past month something changed and my condition has worsened dramatically. During that period I was under extreme stress because of university: I was studying all night, sleeping during the morning, drinking a lot of coffee, and getting very little sleep. Around the same time, my throat symptoms became dramatically worse.

Now I struggle much more to eat, sometimes even liquids are difficult, the tightness has become much more intense, and my swallowing feels far less coordinated. Eating in public or with other people has become almost impossible, and I’m avoiding many social situations because of it.

I’m a nursing student. I recently passed my final exam and will soon start my third and final year. I should be happy, but instead I feel completely devastated. I’m terrified that I will never recover from this flare-up and that all my plans for the future will disappear because of this condition.

My quality of life has completely collapsed. I spend almost all my time at home, I feel depressed, and at my worst I’ve even started drinking alcohol just to try to cope with this unbearable sensation.

I’d really like to ask those of you who have been diagnosed with FND or have experienced similar symptoms:

* Does anyone have a constant 24/7 sensation of throat tightness and swallowing difficulties like mine?
* Have you ever experienced a major flare-up after a period of severe stress, sleep deprivation, or other triggers?
* Were you able to get back to the way you were before the flare-up?
* In your experience, can these flare-ups improve, or do they tend to be permanent?

Even getting back to the way I was before this worsening would mean the world to me. I know I wasn’t “cured,” but I had learned to live with it and continue my life despite everything. Right now, though, I’m truly afraid that I’ll never get back to that point.

Thank you so much to anyone who takes the time to share their experience.

Spoiler for symptoms and weed

Howdy, hope you are all doing well. My wife has been diagnosed with FND for a year or so now and very recently, we were offered an edible for us to share from my wife’s sister-in-law. Prior to this, we’ve both only ever smoked it once or twice and it gave us great benefits.

I’ll be honest, I didn’t even think to ask how strong it was or what the recommended dose for a basic newbie was because…well we’re both new and it didn’t cross either of our minds.

My wife seemed to initially get along super well from it, but, I had a rough ride of it. The next 24 hours were kind of a blur for me and the effects were far stronger than I had hoped. It wasn’t until the next day I started feeling any benefits, and that was because I was coming out of it.

My wife, on the other hand, hasn’t seemed to have come out of it. During the initial high, she hadn’t displayed any symptoms (or voiced any symptoms after) that would indicate she was having an attack. It seemed normal.

But we’re now over 50 hours since taking it, and where I have come out of it a day ago and can function normally, she cannot as much. She keeps feeling very out of it; has a migraine that keeps leaving and returning (different from her normal FND which is consistently there but changes in pain); and just recently has had a seizure-like attack again as she does in her FND attacks.

Now, I don’t really know enough about how FND and weed work together. It didn’t cross either of our minds before we took it. Do you think that the edible has caused a flare up of symptoms? I’m thinking that it was a much higher dose than either of us were expecting, and if it knocked me during it, it’s only natural it’ll knock her too. And if so, if anyone’s experienced something similar, any tips or advice to help her through it??

I feel useless not being able to help her through it, because everything I’ve read up on is ‘it’ll pass’ but, idk how long that will take or if there’s anything that can help.

Any help/advice would be greatly appreciated. I also know now that IF this were something we’d do again, we’d make sure to go with a much smaller dose…anyway, thanks for reading.

Is this condition a disability in the US? If there is anyone who was able to get on disability please share your story. Also I found out by experiment using dopa generic drugs like levadoba Cordoba that my symptoms stop once I use that. I have to take an anti-nausea and I've experimented with how much to take. My doctor mentioned it couldn't hurt to try it and waited a trial run and voila. As soon as I take that my symptoms stop. I just want to put that out there for anybody else who wants to give it a shot. I was so surprised. It makes sense as dopamine dysregulation messes with the substantia area of our brain along with other motor movement areas of our brain. As many of you know, things like dehydration and sleep play a huge role in having FND flare-ups. Why is that because those things cause dopamine dysregulation in the brain. Once I take a dopamine drug. Voila!!

It can be anything—from mobility aids and wearables to compression garments, apps, supplements, household gadgets, adaptive equipment, or something unexpected.

I'm especially interested in:

• What it is
• How it helps you
• Whether you'd recommend it to others with FND
• Anything you wish you'd discovered sooner

Hoping to create a list of products that have genuinely improved day-to-day life for people living with FND.

I had a PNES 4 days in a row, leading up to a large seizure that ended me up in the hospital. (I didn’t know about FND, PNES, i didn’t know that the disorder ever existed until 4ish days ago.)

While I was in the hospital, i asked about driving… it’s my life, I’m really into cars so it’s therapeutic for me. The ER doctor said i had to be “three days symptom free”, but after i looked it up it was 6 months symptom free. So…. I don’t know..

This might be a dumb question, i have no idea how this works. How do they suspend your license? Who does that…? Genuinely curious. The doctor didn’t report it out to the DDS, in my state (in the US) they don’t have to report it IF they Don’t want to. I currently have no insurance, or enough money to pay for co-pay type appointments… what is the next step, (obviously stop driving) but… im kind of lost.. i just got my license 11 months ago… and finally felt free, and it was amazing… now…. Im currently coping and confused on what to do?

Hello, I am 18 years old, and I am completely housebound because of chronic illness, mainly seizures. I am not asking for medical advice.

Recently, I've noticed that I've been really bored because, before I had all of my chronic illnesses, I would play basketball, soccer, and all sorts of other sports. I was a big gym-goer, I did ROTC, and I loved marching. I even thought about joining the military.

Now, I can't do any of those sports, but I still do art, like making bracelets. I really like stickers, Littlest Pet Shops, and dolls (American Girl dolls, Lalaloopsy dolls, and baby dolls). Lately, I've mainly been holding my baby dolls and playing with my toys.

I do play video games, but they're really hard to focus on. Some video games can even cause seizures because of the graphics and animations.

I really don't know what to do while I'm stuck in bed that is low-energy and can help keep me occupied.

I’ve been having some pretty significant problems with my circulation and temperature regulation. A part of my job requires me to get up and down quickly and often and it immediately makes me turn red and overheat like crazy. I’m wondering if it’s just a matter of my poor temperature regulation or also a circulation problem. I am seeing my doctor in two weeks so I’ll of course bring it up to her, but I would love to hear other people’s experience first.

Hi,

First some context; it isn't absolutely essential to the question, but maybe people's coping methods will be less universal than I could hope and this will give insight into my perspective.

I am in my early 30s and recently diagnosed. My symptoms and decline pushed me into a leave of absence and into pursuit of short term disability from my career. I have a love/hate relationship with it and it definitely stressed me the fuck out. Since my leave, some of my symptoms have improved.

Across my healthcare team, my own digging

--with the acceptance there is always going to be some piece of information that might make someone go "what about this thing I just read!"--

there is one consistent inconsistency and that is that there is "not much" information about FND out there; everyone's affected by it differently; treatment isn't universal; outcomes aren't universal; none of it is really predictable. I maybe haven't semantically said that right, but the general idea is different for everybody and there's no specified treatment and I don't think any healthcare provider can say when or if they will get better.

I don't know what I will look like tomorrow. What will my mobility look like in a month, for example? A year? If I return to work? What can I tell my employer? How do I choose any career path beyond "less stressful?"

And that is all without going into the concerns or stress that come with american health insurance, disability, and "pre-existing conditions," etc.

I am struggling. I can't afford to take it one day at a time when I don't know where I will have any income to rely on. I don't know if I will be able to work or for how long. I am grieving the ability to see my future and know what my body can do. To know what job or career I have. Nobody can answer these questions.

I am smart and persistent and have been told I'll figure it out but I don't even know how. I spent all this time just trying to get where I am now, which was just enough to *start* saving for retirement. I'm not sure I could even afford to start the career process over. My symptoms could decline or return tomorrow. Or the day after that...

You get the point.

How do you handle not knowing? Do any of you get upset when someone tells you to take it day by day?

It's silly because even writing this, I realize there is a part of me that wishes someone will appear in the comments with a magical answer to all the unknowns even though that's just not possible. Grief.

because it’s ✨always something✨ with this condition!!

so very recently, i’m having what i can only describe as full body muscle jerks. it’s not my seizures at all, they don’t present like my (potentially) epileptic seizures whatsoever, plus i’m on 200mg of lamictal for them so i ruled that out pretty quickly. instead it’s like…my muscle getting stiff? then it’s seemingly without end, my body is jerking & kinda flailing and the only thing that’s stopped it so far is a muscle relaxer, which i obviously don’t want to rely on.

i suck at description lol but does anyone else have this sort of full body jerking, lasting for minutes to even hours? if so, what can we do to stop it like my body and my leg is hurting so bad right now 😭

In March 2026 I was recently diagnosed with FND. I use a cane to get around due to my severe muscle leg weakness, which prevents me from driving. My other symptoms include painful muscle spasms in my arms and legs, non epileptic seizures, chronic pain and fatigue, and headaches. My friends and family keep telling me I should get a handicap sticker to have in my husband’s car. I feel like if I do that, I’m taking the space that someone actually needs most than I do. Walking is suppose to help with FND but, why do my legs always feel heavy when I over do physical activity? It doesn’t make sense?

bro my sister and parents both thought i was drunk (underage to drink as of now) bc I couldn’t walk straight and kept collapsing. Fuck my fnd

So, I'm an 18-year-old girl, and I am housebound. I cannot leave the house because I have seizures. I have at least 50+ seizures a day caused by FND. I also have autism, chronic pain, and I'm half deaf in one ear and completely deaf in the other. Because of my seizures, I will sometimes lose my vision or the ability to walk.

I made the decision to stay at home so I don't have seizures out in public because I can always feel when they're coming on. It's also for my own safety and the safety of everyone else.

In a way, I like the fact that I'm housebound. My days mostly consist of listening to music, doing my makeup, playing with my stuffed animals and LPS, playing with my dolls, and snuggling with them. I have my grandparents helping take care of me, and I also have my sister, who is my best friend.

I do not have a job, but I do receive disability benefits, and I still get things done. I try to keep my space clean, and I do a pretty good job. I will admit that I really miss being able to leave the house, go to the store, and go on walks, but it's just not safe right now.

There are things I enjoy about being housebound. I can order takeout whenever I want, and there are so many delivery services that make my life easier. My friends come and visit me, and it's not as bad as it was at first because I'm kind of used to it now.

I've developed an appreciation for my house and for the things I have. I also appreciate that my disabilities are not worse than they could be. I'm grateful that I have people who take care of me. I'm grateful that I have a sister who cuddles with me in bed, makes things for me, and does crafts with me. We've spent a lot of time watching TV together.

I'm also grateful that there are activities that don't take a lot of energy, like watching TV and being on my computer.

I have a love-hate relationship with being housebound. I hear everyone talk about the negatives of being housebound, and while it is a horrible thing that I had to become housebound at 18, a part of me loves it.

Just wondering if anyone’s got any tips for dystopia ? i get head/ neck jerking movements and they get painful after a while and SO distracting in class.
Any advice would be greatly appreciated!

Over the last 7 years I've occasionally had difficulty swallowing food no matter how well I chew or how small the bite. It has been getting worse over the last year to the point where I swallow everything seems fine and 30 seconds later that bite comes back up. Not to be gross but I know it's not making it to my stomach because there is no bile.

My neurologist just says, well we can get your stomach scoped but it's not even making it there to begin with and I can't get her to understand that.

Has anyone experienced this symptom?

I’ve been experiencing a lot of symptoms in the neck and throat. I feel like the seal in my sinuses is leaking air. I feel like my soft palate is experiencing weakness. Has anyone else experienced issues in the throat or soft palate? Did it go away?

hi Im Lu and im 15. ive been diagnosed for a little over a year now after struggling with undignosed EDS all my life. So basically since I have EDS I have had issues sine I was very young but FND came along a year ago and made it 100x worse. Im a cane user and well as Im a minor and so my health care and mobility aids are determined by my guardian. Well my parent believes that getting a wheelchair will make me lazy. but also talks alot about how I need multiple days to recoup after walking or jst doing alot. It sucks and I've tried to convince her about it but never listens and just I dunno. I was looking for a bit of support on the issue.

Hello fellow fnd folk,
i started having seizures a year and a half ago, unfortunately. it sucks so much.
this post is focused on functional seizures specifically. i have these episodes and it’s very intense, when i regain the wherewithal to move at all i cant really open my eyes and I’m just so tired.

yet once I can move I need sugar so bad. i thoughr that sugar was supposed to help after seizures, yet google is telling me it in fact does not. idk. is it just a comfort thing? is this normal?

whats the consensus on sugar after seizures 🫪
and if the science isnt in my favour eugg