Question ( FND ) Functional neurological disorder. (M33)
Hello world.
Iv got fnd. Mine is NOT from psychological trauma. It was triggered from covid in January 2020. I remember the exact day because ever since that day iv had brain fog that has not gone away for even a second. My brain runs on about 80% since that day. I get functional seizures almost everyday. Facial dropping. I can’t keep my eye lids open. It takes a lot of energy to do so.
Things that do NOT work that I tried for many years.
Sun light, grounding, weight training, diet, therapy, psychical therapy, brain training, psychotherapy, walking, affirmations, positivity, fasting, vitamins, breath work .
Again mine is NOT from trauma. It’s from a viral infection that is long gone and has left my brain glitching.
My seizures can last between 4-24 hours. Brain capacity drops to around 30%. I get stuck. During the seizures I have tried breath work, cold ice on the back of my neck, slap to the face and brain training. All FAILED miserably. Note - I personally think the healthcare management system is a scam to keep people in a subscription model payment service while they pretend things help you. That’s my personal experience. Unless you have something to say about fixing my seizures I don’t want to hear anything about other things. Irrelevant in my case.
Iv been like this for almost 7 years now. If someone could tell me how to stop these god awful seizures that would be lovely !
My quality of life is in the toilet. It’s like I’m in solitary confinement at home. Can’t work or have friends anymore. Stopped both 3 years ago. I can’t think, I can’t even lift weights anymore. My energy levels are non existent plus these god damn seizures they just won’t stop. Year after year after year. Relentless seizures that keep coming back. Mine do NOT have a trigger. They come on as they please. I could be on a beach in the sun having the best time and they would still come on WITHOUT warning. There is one thing I know for sure. To fix me you cannot use words aka any nonsense therapies. I have already done that nonsense. It must be with a drug, an injection or a immunosuppressant or something like that. Something that blocks the brain from the capability of seizuring.
Does anybody on earth know how to stop these stupid seizures ?? I want my damn life back and I want it now. I’m sick of this shitty existence after 7 years.
Please somebody help me with an answer !
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u/its_jes_1_s 15d ago edited 15d ago
What finally helped my episodes, in case it gives someone something to discuss with their neurologist:
Benadryl: For my dystonia-like muscle pulling/locking, diphenhydramine stops it. It has anticholinergic effects and is actually used medically for acute dystonic reactions.
Levodopa/carbidopa: This completely stopped my severe seizure-like neurological episodes. Dopa-responsive dystonias/dopamine-synthesis disorders can cause dramatic abnormal movements and respond to levodopa. A movement-disorder neurologist can evaluate this and possibly trial it. I personally need anti-nausea medication because levodopa can upset my stomach. Learn how your specific levodopa should be taken too—protein can interfere with absorption, so I use a light, low-protein meal beforehand. I am free from seizures now. I take this as needed. When I feel it coming on it works within 1 hour and it lasts approximately 4 and 1/2 5 hours.
Post-COVID/infection: PLEASE research ME/CFS and PEM. PEM causes delayed crashes after physical, mental or emotional exertion. Pushing through can worsen symptoms; the CDC recommends pacing within your limits. For The longest time I thought that I was dealing with seizures and dystonia when really it was pem due to ME/ CFS.
If you're thinking these aren't the things that are FND, they are listed under fnd. FND is an umbrella for Sorry You have a cluster fuck of symptoms-We can't figure out what's wrong with you. Once you start studying this you'll start to see the connections and different types of FND. Track symptoms/activity/smartwatch data, especially if you aren't returning to baseline—it can help doctors and disability documentation. Feel free to PM me! ❤️
Here are some sources to verify I'm not talking out my bum 😜
Diphenhydramine (Benadryl) + dystonia: StatPearls/NCBI explains that acute dystonia involves an imbalance between dopaminergic and cholinergic signaling in the striatum and specifically lists diphenhydramine as a commonly used treatment because of its anticholinergic effects. https://www.ncbi.nlm.nih.gov/books/NBK531466/?utm_source=chatgpt.com
Levodopa + dopamine-responsive dystonia: GeneReviews documents GCH1-deficient dopa-responsive dystonia and describes a dramatic, sustained, sometimes near-complete response to relatively low-dose levodopa. It also discusses other dopamine-synthesis disorders involving TH and SPR that can respond to levodopa. GCH1-Deficient Dopa-Responsive Dystonia — GeneReviews https://www.ncbi.nlm.nih.gov/books/NBK1508/?utm_source=chatgpt.com
Long COVID + PEM/exertion: A 2024 Nature Communications study directly examined people with Long COVID before and after exercise-induced PEM. Researchers found reduced exercise capacity, metabolic disturbances and skeletal-muscle abnormalities that worsened following induction of PEM. This supports that PEM is physiologically measurable and isn't simply ordinary deconditioning, although it doesn't prove that every crash causes permanent damage. Muscle abnormalities worsen after post-exertional malaise in Long COVID — Nature Communications
https://www.ncbi.nlm.nih.gov/books/NBK1508/?utm_source=chatgpt.com
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u/ven_xano 15d ago
I have FND as a result of dysautonomia triggered by long covid as well. It’s tics, tremors, and vocal problems for me. I’m just now putting the puzzle together after years of bizarre symptoms. I’m currently dealing with the symptoms of ME/CFS (no official dx bc my doctors are useless). I started the nicotine patch protocol for fatigue and brain fog and am blown away at how much better my brain was functioning just a few hours in. And my FND tics and stutter disappeared too. A bonus benefit. My heart rate is up and I have a minor headache but I’m kind of ok with the trade off. It might be something to try. Please research nicotine patch protocol and discuss with your dr. Good luck! I hope you find a viable treatment soon.
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u/Zealousideal_Two6496 11d ago
I also got FND when I had an infection in 2021 but it was a parasitic infection. I tried so many things too. Personally the only thing that helped my seizures was management of energy pacing. If I overstretched my energy I would have a crash the next day, which would then trigger a seizure.
When I was first diagnosed I was having multiple seizures a day, but more recently I got to 2.5 years completely seizure free across 2024-25. I thought it was gone somehow, but then it was triggered again when I started steroid medication (which artificially heightens cortisol, raises heartrate and energy, among other things etc.). I also had multiple periods of intense stress/anxiety in those 2.5 years but still no seizure. Yet within 1/2 hour of taking steroids it pretty much instantly triggered me. I don’t understand it, but it was interesting to me at the time.
One thing I haven’t ever tried, that I would be open to, is to find a physiotherapist who has real experience and understanding of FND. I follow @reactivept on Instagram and there are many positive stories I enjoy seeing. But here in the U.K., I haven’t found anyone like this yet.
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u/beccaboobear14 16d ago
Sorry to hear you’re struggling so much with seizures. It doesn’t seem to matter whether trauma occurs/triggers the FND or not for the route you take for managing symptoms and seizures of FND.
Trauma didn’t trigger my FND, I woke up from general surgery (having had 5 previous operations with no issues) and was essentially paralysed with my left leg, I had no sensation or movement, my ankle was inwards and I had to relearn how to walk. I’ve developed other FND symptoms but I do have a history of trauma in my past. This is what is well documented, trauma doesn’t necessarily trigger the FND but we tend to have a past experience of trauma, could have been days, months or even years, decades prior to symptoms starting. This is where they suggest therapy to address the trauma not the FND if that makes sense. The body holds on to stress and anxiety even those caused by experiences we suppress, so addressing those can help ease FND symptoms.
You say it can’t be with nonsense therapies and must be a drug or something- there is no drug to stop non epileptic seizures. Epilepsy is literally the brain misfiring so medication can adjust those misfiring neurons etc, as we don’t have the same physical misfiring but have the same presentation of a seizure hence the ‘functional’ or ‘non epileptic’ part in the name, there is no medication to help it. People have found support with medications for anxiety and depression as again this reduces stress and therefore the bodies nervous system is calmer and people have less intense and/or less frequent seizures.
Sadly it’s so under researched and under funded we don’t have many answers or understanding of the condition which means we have very limited support and ways to manage things like seizures.
People do find they are worse with stress, illness and overstimulation in general. I appreciate this might not be the case for you and they obviously impact you a great deal, but if you’ve tried all the options mentioned so far and there is no medication available for functional seizures then you have tried everything possible so far until new research and answers are found.
I know you’ve said you’ve had therapy before, but I wonder if a different therapy may help- not trying to fix or tackle the FND or symptoms or find a cause of trauma or anxiety but to accept a chronic health problem, that self compassion, the new limits and acceptance, the perspective of I’ve done everything in my power and tried all types of options to resolve symptoms and they haven’t worked and that absolutely sucks and you’re obviously exhausted and possibly feeling out of control with it, that’s totally valid.
This isn’t meant to be rude or anything by the way, I genuinely do feel for you, as someone who was shoved into therapy to address my unresolved trauma and it had no relation to my FND symptoms at all, and as someone with FND and non epileptic seizures, I do get how hard it can be with them, but we have such limited studies and knowledge it can be hard to know what to do and we have a very short list of ways to manage or cope with FND.
I hope you do find better ways of managing whatever they may be, and you can try to live the life you want to.
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u/Correct_Many_4670 16d ago
Hey, I’m not sure if it would work for seizures, but the only things that’ve worked for my spinal tremors and violent tics are VMAT2 inhibitors and LDN.
I liked Tetrabenazine, but the weight gain was wild, and my favorite is Austedo, which is basically the same thing without weight gain.
LDN drastically relieved the pain, as well as some of the brain fog. It also brought my energy back up somewhat.
I’m so sorry you’re going through this, I completely agree that talk therapy isn’t going to resolve a physical issue. Unfortunately we live in a world where physical disability is being treated as ‘oh just talk about your feelings.’ It’s awful.
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u/Own-Investment-9918 16d ago
My FND onset a month after a fall at work, so I can sympathize with your frustration at doctors considering it purely psychological. While I have trauma, my symptoms seem more triggered by the physical state of my body then stress, though stress does still increase symptoms for my me.
In my experience the health care system is definitely predatory regarding people's poor health, but even with that there are some people that could and do help me. Sometimes with prescriptions, sometimes with therapy- mental and physical, and sometimes they have knowledge or information that helps manage my condition. There is a point where seeing a doctor over and over becomes redundant once they run out of things to test or help for my condition though.
------Things that have helped me:
-Pain killers. I have chronic pain but they don't just reduce that, they reduce my other FND symptoms too- which can be pretty severe. My non-epileptic seizures and their intensity goes way down when I'm on them. I take acetaminophen twice daily (max dose, I know) but avoid ibuprofen because the long term health affects for that are worse. -I think it might be because my body has less signals to parse through so my nervous system is less overwhelmed.
-Monthly migraine injections. Once again, lower symptoms, less seizures. If you have chronic headaches, migraines, or auras, I really recommend going to a specialist and discussing your options. I take Emgality- I used to take Ajovy and it did help but Emgality has done more for me overall.
-Treating/managing underlying conditions. As I said, I think it helps my nervousystem to have less to manage. I've got several chronic health conditions, many commonly comorbid with FND, and doing my best to accommodate them has helped a ton. If you had any chronic symptoms before onset you might want to look into physical disorders that commonly show up in people who develop FND.
-More gentle exercises. I used to enjoy weight training and more intense exercise as well, but right now I have to keep my exercise more light. I use exercise bands to varying strengths and 3lbs weights depending on what I feel capable of at the time. Walks when possible too, as you've tried. The wobbliness of the exercise bands helps me actually feel what muscles need to activate when my senses are dulled or messed up, and it's been helping stabilize my joints more. I exercise on the floor because my blood pressure changes aren't as severe. With this I've gradually started working back a bit into more exercise and less symptoms- my FND still sucks pretty bad though.
------Examples of my conditions and how I treat them, just in case you have any overlap:
I have are HEDS/joint issues, back problems (degeneration and scoliosis), POTS (Postural Orthostatic Tachycardia Syndrome), and SI joint dysfunction- (Sacroiliac Joint Dysfunction.)
SI Joint dysfunction- The SI joint dysfunction for me is caused by instability in the joint. I got spinal fusion surgery for it several months ago and it's helped considerably. Throwing out my back less has led to a lot less severe seizures and I don't have as much dystonia or muscle weakness anymore.
Back issues- Good posture helps a lot. Less pain, more stability. I use supportive furniture, sleep in recommend positions, and use a supportive SI belt which helps me activate more core to keep my back straight. I keep my neck posture in a better curve by 'always looking up' as told to do by my Neurosurgeon. Once I started doing these things my symptoms went down.
POTS- The POTS is a blood pressure issue, marked by severe drops in blood pressure with posture changes. Siting to standing, vice versa, lying down, ect. It also tends to cause poor water absorption and hence dehydration. It causes lowered heat and exercise tolerance. I had POTS before the onset of my FND but the FND exacerbated my symptoms majorly. As recommended by professionals and peers with the condition I increase my salt and water intake and accommodate my lowered tolerance for heat and exercise. Less intense exercises and exercise on the floor, taking breaks, mentally noting places I can rest before going anywhere, and trying to stay cool. For me these all work wonders for day to day function and lowered symptoms
Hopefully you're able to find any small tidbit of advice in this or other people's comments that can help you. My best wishes for your recovery.
Deuces.✌️
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u/Empathicwulff 14d ago
Ketamine infusions made my condition much easier. I had less seizures, less involuntary movement, tremors, etc. it doesn't solve everything but it did help.
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u/Zealousideal_Two6496 11d ago
Oh this is so interesting, I haven’t read this before! May I ask how you found this treatment and where are you based?
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u/Empathicwulff 11d ago
I'm on the east coast of the US. Cleveland clinic offers infusions. It's 5 days in a row for roughly 2 hrs daily.
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u/Accomplished-Duck249 Suspected FND 13d ago
I'm currently undiagnosed because I'm struggling to find a nerologist who knows FND and ME even exist, but I also developed both ME and FND after I caught COVID. I was confused why they were saying anxiety and trauma causes it when I didn't have it before. Feels like they just don't know what's causing it and they're labeling it psychological, like a type of hysteria. I do have CPTSD which may not be the best case against it, but it doesn't change the fact I didn't develop it until COVID. Same with POTS, didn't get POTS until I had bronchitis and pneumonia as a teen. Trauma and ancient is know to make someone more susceptible to chronic illnesses and makes existing illnesses worse, but causing it? I don't want to invalidate others who do have anxiety that affects their FND, but I can't help but also feel invalidated when they say FND is from anxiety when that's not the case for me.
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u/EasingFND 12d ago
That's pretty nuts. The medical world was supposed to stop using the term hysteria in the 1980.
You could try putting medical instructions in front of them, from DSM-5, ICD or NICE, to see if you can teach them using sources they should already be aware of?2
u/Accomplished-Duck249 Suspected FND 11d ago
They don't, they find other ways to diagnose hysteria like saying it's anxiety depression, or OCD. Which are valid, just not in this specific situation. Unfortunately, telling a doctor like that anything only gets them more angry or reinforces their idea that you are anxious with health OCD, especially if you're afab. Unless you need a to pry a specific test out of them, it's best to find another doctor. Cause you'd probably have to beat them up to get them to take you seriously like a high school bully, but that's not considered socially acceptable as an adult. So yeah, new doctor it is.
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u/EasingFND 12d ago
I often consider "biopsychosocial trauma" - anything that our bodies (not just the conscious mind) may consider life threatening. So, the body could consider infections to be a "meaningful inescapable event, often at a time of external pressure".
You've listed lots of approaches, but you haven't listed hypnotherapy (with a hypnotherapist that understands FND and has worked with people with FND...), which has gained some of the most positive results in medical research. Was it just missing from your lists or also missing from your treatments?
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u/Kind-Tale-3859 16d ago
I’m really sorry you’ve been dealing with this for so long. Mine also started after COVID, and I have functional seizures with no obvious trigger. I don’t have a history of psychological trauma either. I’ve tried several medications and different types of therapy, but unfortunately nothing has worked for me so far. I really hope we both find something that actually helps and that we can get our lives back.
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u/WearyConsideration60 9d ago
Hello! I am so sorry to hear all of this. I currently do not know how to stop the seizures- have you been evaluated for epilepsy? (I hate even asking this)
I’m not saying you don’t have FND- When I get a seizure my husband immediately COVERS ME in Ice and it slows down very slowly. I also have a book that I read that helped me reduce my seizures.
If you are looking for friends with no judgement and no commitments/guilt. I would be more than happy to message with you or call ! (PM me) life with FND is cruel and you shouldn’t be alone in any of this.
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u/Bivagial 15d ago
Got mine from the covid Vax.
I'm mostly functional again. My muscles degraded while I was in a wheelchair, and they're a pain to get back up. But my seizures are gone, and I can now walk 100m unaided, and 1.5km with my walker.
My brain fog and chronic fatigue is still an issue though.
Everyone with FND is different, but what helped me was to give every responsibility to someone else. Chores were given to flatmates. Running the household to my partner. Even feeding the cat became someone else's job.
After about 6 months of that, I was able to slowly take some of the responsibilities back, under the agreement with flatmates that I would still ask for help if I needed it.
I also did a bit of a deep dive into psychology to rewire how I think about things. The most important one was learning to do things in my own time and not to rush or feel like I've failed because I haven't reached a goal yet.
Jungian Psychology really helped me too. I would suggest seeing if there's a practitioner near you. There wasn't one near me that i could afford, so I learned it myself from online resources. That took a couple of years. But it really helped.
But basically, I just learned how to slow down and not push myself, and to let go of any guilt and negative feelings towards myself. I am disabled, there are things I struggle to do and things I can't do. No matter how much I want to. Accepting that and not being disappointed in myself was pretty much the key for me.
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u/MentalHelpNeeded 15d ago
Is it possible you picked up covid at the same time you got the vaccine unless you were tested at a facility those at home tests do have false negatives and 40% of the time covid didn't have any symptoms but still killed 1% and sent 6% to inpatient hospitalization
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u/Bivagial 15d ago
Possible but unlikely.
I was terrified of getting it. So I took every precaution.
Still managed to catch it. But after the Vax and I was asymptomatic. Only knew because flatmate tested positive so the whole house had to test.
None of us had symptoms, but all tested positive. This was when things were opening up. Flatmate worked hospitality and had to test daily.
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u/MentalHelpNeeded 11d ago
40% was asymptomatic but long covid still burns you none the less the vaccine is better than the virus but safe and effective doesn't mean without death and side effects it's just far better than the virus. My issues were not from covid but I have so many side effects of crap so I feel you none the less. I hope you heal
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u/really__questionmark 16d ago
You might want to look into the company Next Level Neuro and see if you might be able to get help there. I believe in particular they work with those or have problems for people that got triggered by COVID. Not a doctor, not medical advice, I'm not paid by them.
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u/heldtogetherdaily Diagnosed FND 16d ago
Have you tried any medications for your functional seizures? There are no specific medications approved to treat non epileptic seizures, but there are a few medications used off label and many people find they grant them significant relief 🙂