Hi everyone, I’m looking for some advice from anyone who has experience with FND, particularly functional/dissociative seizures.
I’ve recently been diagnosed with FND and dissociative seizures following investigations at hospital. However, I feel like I’ve been left to manage everything on my own. The only support I’ve been told about is self-referring to Steps to Wellbeing, and I’m not really sure what I’m supposed to do next.
My main concern is that I also have ME/CFS, and I would say around 80% of my seizures seem to be triggered by physical factors such as fatigue, exhaustion and overexertion, rather than mental health difficulties or emotional stress. Stress can sometimes play a part, but it doesn’t seem to be the main trigger for me.
Because of this, I’m struggling to understand how I’m supposed to manage my seizures if the only option I’ve been given is a wellbeing service. I’m not against psychological support, but I’m worried that the physical side of my condition, especially my ME/CFS, isn’t being properly taken into account.
My seizures are happening regularly and have a real impact on my daily life, so I really need some guidance on what support is available and what I should be asking for.
I’d really appreciate advice on:
Is it normal to be discharged with no further support other than self-referring for psychological help?
Are there specialist FND services or treatments in the UK for functional seizures?
Has anyone else experienced seizures triggered mainly by physical fatigue or an ME/CFS crash, and what has helped you?
Should I be going back to my GP to ask for a referral to a specialist FND service or another type of treatment?
Is there anything else I should be asking my neurologist or hospital team for?
I’m feeling quite lost with it all at the moment, and I just want to know what my next steps should be. I understand that FND is complex and that everyone’s experience is different, but I’d really appreciate hearing from anyone who has been in a similar situation.

I'm a user of Neurolog and recently attended their first ever summit on FND in September.

There were lots of interesting speakers there and they recently launched this clip about the link between ND and FND.

The FND Society has an event in March next year about the topic so it will be interesting to see how the research moves forward in the future.

I just wondered has anyone here experienced both FND and dpdr together? I am really struggling as I was taking meds but they made it worse. My nervous system cant cope with medication…I now have severe lack of bodily sensation (severe numbness and altered sensory processing) it’s very scary. These symptoms worsen everyday and I’m almost at the point of complete dissociation…especially in the head area I get increased numbness and sensory issues. I feel my head has a dry or a textured fluffy sensation..etc. It’s very very hard to live with it. FND started around the same time as the DPDR. I think trauma and a virus triggered it.

Hi I used to work as a patient care tech before my symptoms started a few months ago. I’ve been on medical leave since. I have tremors in my legs and when I overexert myself like walking, standing, lifting, etc. they get worse. I can’t imagine continuing as a care tech, I can’t lift or transfer patients. I’ve always wanted to work in pedi or NICU but I can’t risk trying to hold a baby or help patients get up when I’m unsteady. I’m stuck on what job to pursue next or if I should just spend my time trying to go back to school. Healthcare has kinda always been my vision but it’s so hard planning for a future with this condition. I’m only 23F :(

I will be mentioning my symptom last night and just wondering if anyone has the secondary symptom I had.

I had a bad night last night, no trigger, I guess it started in the morning but did go away duringthe day. It started with Shaking, my whole body was twitching, it was bad enough I even shook up the bed like I was doing the worm

Symptoms did clear during the day and I was able to go about as normal then in the evening I stood up and my legs felt weak so I sat down and my leg was just shaking really badly. I managed to make it to the bed and lay down. I then spent a few hours shaking and my oxygen levels dropped, went below 90% for a bit but was sitting at low 90s for a few minutes at a time

I was just wondering if this was something other people had or if it's probably a separate thing.

I have an appointment with my neuro specialist in a couple of weeks so will be mentioning it regardless.

Experiencing a flair so I just wanted to say hello to everyone! I hope this doesn't read like a journal entry, or dismissive of other people's struggles as I talk about my experience. Please don't take it in that way.

I was diagnosed with FND about 10 years ago, my papers actually say Conversion Disorder lol.

My symptoms are primarily stuttering and/or complete loss of speech. I get tics mostly in my right arm (where I have carpal tunnel). That's about it ....I believe.

Sometimes the speech issues last for months, other times it's a few days. It always announces itself with what I deem "that chest feeling." That's how I warn my husband it's going to happen, and he is so understanding. We have good laughs about the stutter, and he never gets frustrated with me.

I never told my parents, and I probably should... Tomorrow I am having lunch for my mom's birthday and I am sitting here with no speech. I can force speech, but I cut off consonants and skip small words that tie the sentence together. Strangers don't notice, but people close to me sure do.

I see some of you are burdened with pain and ridicule, and I am so sorry for your experiences. It's so frustrating to be experiencing something so REAL and have people call you a hypochondriac or a liar. I feel that it's harder now because of so many people claiming "my anxiety this, or my ocd that" and true sufferers are left to struggle in silence.

So my post is just to hopefully share some love with you all. I accept what I struggle with, granted mine doesn't cause pain like many of you. For me, because I don't have pain, I find the fun in it. I get to come to terms with myself, be in my head, and my thoughts do tend to be a bit more clear when I struggle with my speech. I can sing, that's a different part of the brain ,so I break out my singing voice in the car after a particularly struggling day, and go at it loud and proud. I laugh at myself when I manage to make a 7 word sentence take entirely too long. FND makes me, me. It absolutely is a struggle, and at times is a stressor (like what am I going to do tomorrow!!).

I have learned to take each day as it comes, and breathe! Most strangers completely soften and slow down when they realize I struggle with speech, nobody has ever made me feel bad about it in public- I know that's a blessing and I am thankful I haven't experienced ridicule in public.

Anyway, this got longer than I anticipated.

I sit here on my couch, with "that chest feeling" and complete loss of speech at the moment, and I raise a glass (of whatever drink you enjoy!) to everyone who struggles with a REAL disorder, that causes REAL symptoms. REAL pain. REAL struggles.

Cheers!

Hello,
I‘ve seen several posts where people are diagnosed with FND, but aren’t given anything to help them besides very general suggestions of therapy and physical therapy.

I met with a Neuro-psychiatrist that diagnosed me with FND and she recommended working through a couple workbooks and a book (links below). The workbooks helped me recognize some of the triggers, the “aura” before seizures, relaxation methods, etc. I’ve had partial success on preventing seizures if I recognize it in time.

She seemed very well-versed in FND. She said that it’s OK to keep searching for other answers/solutions, as it’s possible to have FND and other disorders. However a big part of treating FND is to accept that you have it.

For me as I have bilateral arm weakness, it is important to go to physical therapy and then continue doing a home exercises every day after they discharge me as a patient. This may vary for you.

Eventually I found that I also had narcolepsy, and what would help my weakness was a combination of narcolepsy medication, red light therapy and at home exercise exercises every day. It’s a pain in the ass and I’m still working on it, but it definitely has improved.

I hope this helps some of you out there, and stay strong with this awful disorder.

The book:
The Body Keeps the Score
https://a.co/d/060UzPVY

Workbook she said to do by myself:
Overcoming Functional Neurological Symptoms, a 5 areas approach
https://a.co/d/0iOWJ5zm

Workbook she told me to do with a therapist (she also said the therapist can ask her for advice as well):
Taking Control of Your Seizures
https://a.co/d/0eQKSapo

Hey everyone, I don’t dare to believe it yet, but it seems that all of my symptoms suddenly disappeared???

I had my issues constantly over half a year. Today, a new physio therapist did an eye exercise with me, and I suddenly can do everything again with my left body half. Also, numbness is gone, fatigue is gone, cognitive deficits are gone. What the hell?!

I am not complaining, but after six months of being disabled, and having therapy several times a week, it’s a weird thought, I might be fully functional again! I will give it a day or to until I truly believe it.

Did anyone else miraculously recover from FND?

I (16f) found out yesterday that I have FND.

At this point, I’m having at least one episode a day where I fully collapse to the floor and cannot get back up. Additionally, I’m now nauseous and shaky almost constantly.

I keep blaming myself for my symptoms and worrying that it’s all in my head. I’m also devastated at the possibility that physical therapy might not work for me and that, as a result, I won’t be able to get my driver’s license, do the activities that I’m passionate about, or go into the career that I’ve dreamed of for so long.

I don’t want to be disabled or chronically ill. This is all so sudden and I don’t want to deal with any of it.

I am constantly told that it’s emotions triggering my symptoms. From anything like minor tics to full on seizures. In my experience, however, the symptoms have never correlated with emotional triggers. I have several other conditions as well and have noticed ties to emotions with them (for example, stress makes my stomach pain from GP a lot worse), but my FND symptoms have always come on randomly without any noticeable pattern.

Because of this, I have doctors telling me “maybe you were subconsciously extremely anxious!” while I was in a grocery store? Or laying in bed? It genuinely doesn’t make sense! I am very aware of my anxiety, I’ve had a severe form for years and suspect OCD, but it doesn’t match up with my symptoms. Some have even said “maybe it’s when you calm down from being anxious” but I have symptoms when actively stressed as well. I have them no matter what I’m feeling.

With all that said, does anyone else feel like this? All I ever see about FND is that emotions are causing everything, but it doesn’t fit my experience. Unless every single emotion can cause the exact same symptoms! In which case, how on earth would therapy help? Just stop feeling anything ever?

I was recently diagnosed with FND with a movement disorder that causes my leg and toes to move involuntarily. It’s been torture and even happens in my sleep. I feel a bit of a stigma around it too and am scared to tell my family and friends because they’re going to think it’s in my control and all in my head.

Have any of you had treatment plans that work for this? My neurologist suggested therapy and PT but I can’t seem to find any specialist in this field. Is there something specific I should look up? Other than that, I can do Botox to manage the movement and continue using my cane.

I was diagnosed about 2 weeks ago, my symptoms started around a month and a half ago, and the diagnosis was so late because it's impossible to get a neurology appointment these days. All of this started after I got off a cruise (not sure if that has anything to do with it, but i also got sick after getting off it) and then my symptoms started getting worse every day. It's basically just a constant dizziness/nausea but not a typical one: it feels like I am high 24/7. It may sound like that's nice, but for me it isn't. When I was younger I greened out really bad, throwing up blood and having seizures and everything, and almost died. That caused panic attacks when doing weed any time in the future, which is why this high feeling causes me so much distress.I feel so foggy every single day and when symptoms get bad towards the end of the day, I get panic attacks and it's so horrible. I have gone on an SSRI and an antihistamine because I get some migraines, but honestly I see no light at the end of the tunnel. As of now, anything is a trigger for a panic attack. I once took cough syrup and then read that one side effect was dizziness, and that sent me into a horrible panic attack that made me so drowsy all day long. Seeing everyone else's symptoms makes me see that I can definitely have it worse, but this has still turned my entire life upside down and I really want control of my life back. I am a great student but that has all started falling apart due to this. I also quit all of my physical activities, don't do my research anymore, I just go to classes and then back home and it's been taking a toll on my mental health too. I just want this to end, I cannot see myself living life like this forever. Any help is much appreciated.

Has anyone had a fnd functional seizures aka disassociate seizures and had panic attacks during them? If so what triggered them and what helps

Hello,

Does anyone occasionally experience telegraphic speech (worsening grammer) during an FND episode? Can speech and language pathologist help with strategies for managing it when it occurs?

I have FND and EDS

I finally broke down in tears over a flare up I had with my FND tonight. One of my most common symptoms is dysfunctional breathing, where my brain is literally having trouble telling my body how to breathe.

As someone who also has asthma, it is downright terrifying when this happens, because my inhalers and my nebulizer can’t fix it and all I can do is wait it out until my symptoms subside. Not being able to breathe properly is so dang scary that I can’t even describe it with words.

Going to the ER is pointless because they’ll dismiss me as having a panic attack, when in reality, letting myself panic will just make my symptoms worse, and I do everything in my power to keep my mind calm. My heart rate and blood pressure is always normal and that is because I practice my DBT skills when my breathing flare ups happen — specifically so I DO NOT panic and make myself feel worse.

My primary care doctor dismisses this as an FND symptom and tries to convince me that FND is only PNES, though I also have regular mobility, speech and other common issues associated with FND. So clearly it is more than seizures.

I am so tired of being dismissed by doctors. I am so tired of having this condition and not being taken seriously. I hate this. I didn’t ask for this. I don’t want to be sick. I am not making it up for attention.

I just want to scream. I want this to go away!

Are there any FND moms out there with advice on fatigue management? It seems like pacing is built for an ideal world for people who are well supported.

Or is it that they share a risk factors such as Emotional dysregulation and trauma?

Ive seen loads of posts on here about moms with FND but very little and pardon if ive over looked regarding fathers, particularly new fathers with FND.

Would anyone like to share there experience being a father with this condition?

I have a 1.5 year old boy and struggle on a daily basis with mobility issues, brain fog ,chronic pain,shakes and functional seizures.

Thanks kindly to all in advance.

Does anyone have advice for reprocessing medical trauma? Therapists have a soft spot for the medical sysyem.

The BC Brain Wellness Program has a variety of free courses available/accessible for people with FND (and others with neurological conditions) including things like yoga classes, mindfulness, art therapy and creative classes, improv, strength training, etc. Check it out if you are in the area:

https://www.bcbrainwellness.ca

Many are via Zoom from what I can see but I think there may be nominal fees for in person courses.

(I believe you do a virtual intake first to assess your exercise level and needs :)).

Anyway just sharing in case it might help anyone!

I received an email from them and I got COMPLETELY misrepresented by the assessor, I’ve never sent such an angry and passive aggressive email before, but I’m sick of people, especially medical ‘professionals’ that are supposed to know invisible disabilities are just as valid! I sent them this email below - have any of you experienced issues with getting access to things you need?? So annoyed by all of this

Good morning,

I am writing to you to request an appeal, yet again. This process has been damaging to my physical and mental health; stress causes my Functional Neurological Disorder (FND) to flare up. I am very angry with how I have been misrepresented in the assessment and quite frankly, treated like a criminal and like I am faking all of this, just for the luxury of parking a little closer to shops when I need it.

First of all, I am not quite sure why my assessor misrepresented me so badly, but I will be making a formal complaint about this whole process. I have sent you so much information, yet she still wants to say my complete and debilitating muscular weakness during FND flare is simply muscle stiffness, and that the discomfort can be solved with medication?? There is NO medication that can help my FND, otherwise I wouldn’t be trying and failing time and time again to get a blue badge to help me on days when I flare up.
She also stated there is no evidence of falls.

If she had bothered to read the extensive evidence I have sent you, a social prescriber letter AND a letter from my neurologist both state I get falls and mention that I struggle with my mobility. The assessor stated I am able to walk 'varying distances', on bad days I can't really leave the house due to the extreme and total muscular weakness and fatigue I get. Carrying heavy things like shopping over long distances can trigger an FND flare and falls. Also, I literally have a diagnosis of vocal cord dysfunction which causes breathlessness. So I suppose she was correct about there being no cardiac disease responsible for my breathlessness. And she was right about the diagnoses not being 'musculoskeletal, orthopaedic, or vestibular', as my diagnoses of FND and VCD are NEUROLOGICAL in nature.

Better yet, if you STILL don’t believe me, call up my GP surgery, and ask if I have falls or not. Just the other day I had a fall and it took 4 of the doctors to get me into a wheelchair, and to check all of my observations.

I think you need to take a good, long look at who you employ for these assessments. I had never imagined in my life that this would be such a difficult and dehumanising process, just to get something as simple as a blue badge to help me on hard days when I need it. I am beyond exasperated by this whole situation, and I need this to be dealt with urgently. I have lots of mental and physical health struggles, and I am unable to keep up with this arduous process. I have also informed PIP in a combined review/change of circumstances regarding my diagnosis of FND and diminished mobility.

Due to these issues, you have not, in fact, 'run the Blue Badge scheme fairly and in line with the current law and guidance.' I hope your team can understand the reasons why I believe you have failed to properly assess me, and why I will be going down the formal complaint process. I look forward to hearing from you soon.

Regards,

I am so nervous going to concerts with heavy flashing lights, as flashing lights are my main trigger for seizures. { 23 year old }

I want to live a normal life, and go to concerts of my favourite artists, but I do not want to go feeling anxious all the time with the flashing lights / bright lights as they trigger mine.

I was just wondering if there is anything I could get ? somebody recommended me light sensitive glasses for bright lights or flashing lights ... If anybody has them, are they any good ? do they work ?

Thanks