What is FND? | Living with Functional Neurological Disorder 🧠
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- Опубликовано: 25 июн 2024
- hopefully this teaches you something about living with functional neurological disorder, and the symptoms and disruptions it can cause with peoples lives and health 🧡
i tried to condense this as much as possible, but it’s such a complex condition to explain so this is still a long video! it’s split into chapters, so hopefully this helps those of you who struggle to concentrate or who feel overwhelmed by long videos :)
you can watch each chapter/segment on it’s own if need be!
all the information spoken about is down below 🫶🏻
Symptoms Mentioned:
- Non-Epileptic Seizures
- Paralysis
- Chronic Fatigue
- Chronic Pain
- Migraines + Headaches
- Dystonia or Limb-Locking
- Visual Disturbances
- Loss of Hearing or Sight
- Functional Tics or Involuntary Movements
- Cognitive Changes
- Gait and Balance Issues
- Foot drop
- Speech Problems
- Sleep Disturbances
- Bladder or Bowel Changes
- Brain Fog and Memory Loss
- Sleep Attacks + Drop Attacks
here you can join my discord server! ❤️ 👉🏻 / discord
(safe space for disabled, neurodivergent & queer people! here i host my online events)
FND Action Website
www.fndaction.org.uk/what-is-...
Non-Epileptic Seizures (NES)
www.gosh.nhs.uk/conditions-an...
Non-Epileptic Attack Disorder (NEAD)
www.epilepsy.org.uk/info/seiz...
Recommended Chronic Illness Items 👇🏻
www.amazon.co.uk/shop/zarabet...
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-------- ✨ TIMESTAMPS✨
00:00 - intro
00:44 - disclaimer
01:37 - what is FND?
02:20 - diagnosis
04:42 - non-epileptic seizures and paralysis
05:54 - other symptoms
08:13 - using laughter to cope
08:48 - other symptoms
10:02 - sleep or drop attacks
11:21 - who can it effect?
12:40 - FND is not conversion disorder
13:35 - is there a cure?
15:15 - coping strategies
16:14 - advice for people with FND
18:27 - outro
Music Used in This Video 👇🏻
Music by Lohfi - Ginger - thmatc.co/?l=ECC17D45
Music by Lohfi - Manifest - thmatc.co/?l=D1E7210A
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✰ FAQs ✰
1.What conditions do I have?
‣ I have Tourette's Syndrome, FND and orthostatic hypotension along with being neurodivergent!
2. How old are you?
‣ 18
3. What is FND? 🧠
‣ fndhope.org/fnd-guide/
4. What is Tourette's?
‣ www.cdc.gov/ncbddd/tourette/f...
5. What do I use to edit videos? 🖥️
‣ Final Cut Pro X
6. What filming equipment do I use? 📸
‣ main camera - amzn.to/3MW7v8w
‣ tripod - amzn.to/3P7G8Ly
‣ vlogging camera - amzn.to/42CBQ1G
‣ mic - amzn.to/3qD5gjg
‣ wireless mics - amzn.to/3X2RxOE
⭐️ RUclips Setup + Equipment ▹ amzn.to/42QmxCN
⭐️ Recommended Products ▹ amzn.to/41wXJPX
(not sponsored! but these are af links so i make a cut from any purchases💕)
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✰ About Me ✰
My name is Zara Beth (zeezee25 on tiktok) and I post videos about disability, neurodiversity and what its like living with Tourette's Syndrome, Functional Neurological Disorder (FND) and Orthostatic Hypotension. Tourette's syndrome is a neurological condition causing involuntary movements called tics.
I use my social media (TikTok, RUclips and Instagram) to advocate and raise awareness for my conditions and show what it is like living with a disability as a neurodivergent person. I am also autistic and share my sensory struggles along with my experiences with mental health disorders.
I show what its like having a disability and the accommodations I have to help my daily life. I am an ambulatory wheelchair user showing my life using mobility aids and how chronic illness symptoms change from day to day!
I am also a musician with a popular song called "She's Mine" available on all streaming services - I wrote, produced, mixed and mastered all my songs myself! I am also an artist and a writer. I love reading and I'm currently writing a novel and a book about my life!
Can we just all take a moment to appreciate Zara's cat in the background ♥️😻 I went to a cat cafe yesterday, you would love it😂
The cat is just sleeping. Lovely cat.
Love the cat
Hey! I have FND as well, and have paralysis, fainting, and tics from it. I use a wheelchair 4 days out of the week right now and your channel has helped me accept myself and feel more comfortable with the diagnosis. Keep doing what you're doing Zara, you've helped and continue to help so many people ❤
This is misinformation. FND HAS NOTHING AT ALL to do with tics and all this other nonsense. It's another disorder that tiktokers high jacked. You are all fakers
what do your tics feel like?
@@goofychicken6961 well sometimes they hurt when my neck jerks but occasionally I get a tingle before I tic. I also have vocal tics which don't hurt at all unless I have a sore throat. Other times I can also have face twitches which don't hurt at all but they make my little brother laugh 😊❤
I have fond too
Chelation therapy helps. It's an easy 30 minute treatment where they use a bag of iv fluid that removes certain chemicals that block proper signaling in brain.many drip spas or hydration therapy center have it for under $100 usd. Also groupons can save even more. It's been shown its linked to toxins
Thank you for this! I was diagnosed in 2017. It’s been a struggle, especially with medical professionals calling me a liar, refusing to provide aid, and insisting not only that I didn’t have it but that it doesn’t exist. Between that and family and friends who don’t understand the condition at all when I explain it, I often feel very alone. I doubt myself and the validity of my experiences. It’s relieving seeing you talk about it here.
I feel you.
I was diagnosed too.
I'm physically okay now but not mentally. And no body gets it.
Hi, I'm 32 and got diagnosed with conversion disorder (before they renamed it FND) when I was in university. So that was 13 or 14 years ago. I had my legs stop working for 9 months with no pain the first time, had to take a hardship withdrawal from university when I started having daily seizures. When my legs started working again that time it was just like they did the day before they stopped working. I was fairly healthy after that aside from the occasional seizures and being diagnosed with celiac disease as well. The second time my legs stopped working it was after the worst fatigue for three months straight and then my legs stopped working for 11 months and have been in constant pain ever since. And I started to be able to walk again suddenly, but get tired legs and leg tremors easily and have never regained my stamina with walking. That was back in 2016 or 2017. I've received more diagnoses since then but two of the things I've learned that have helped me the most are 1: just because you don't "need" to do something in a way that makes it easier for you doesn't mean you shouldn't do it the easier way (for example for me that's using the wheelchair when walking far, sitting when I can while cooking) to save energy for future days. And to have a complete rest day sometimes on a "good day" to have more good days than I would otherwise. For you or anyone else with FND who is reading this, functionallyjess on Instagram has a lot of great awareness posts about the science of FND, things that might help, etc. You are not alone in this.
Hey!
I have FND as well. Recently I found an article of an international study on how Autism and FND are connected. You can find it online on the website of the National Library of Medicine under the name "Autism Spectrum Disorder may be highly prevalent in people with Functional Neurological Disorder". Maybe it is interesting for you.
Also, I wanted to thank you for all those videos. I am from Germany and at the moment I have only been diagnosed for Conversiondisorder/Other Dissociative Disorders, because FND does not exist as a diagnosis. The reason for this disorder is as well highly believed to only be psycosomatic.
Therefore I am really thankful for all the awareness you are spreading.
Es gibt die Diagnose funktionelle Bewegungsstörungen im Deutschen 😊
I was about to comment something similar only without actual references. This research you're sharing is like gold to me and my psychiatrist. I also have FND and am autistic.
Thank you!
@@robertocarvajal9140I have autism to heds fybromyalgia cfs Dr beard who called it neurosthenia in Victorian times and he had autism to.seams CFS fybromyalgia fnd migraine IBS all same as in neurosthenia and long covid the amagdalia is larger
Sycosomatic is the subconscious brain so must be correct
@@Truerealism747 I didn't know about neurasthenia. That's definitely one of my main symptoms so it's good to give it a name. I've been trying to reconsider my view of life so I don't suffer from fatigue after worrying about something and it seems to be slowly working.
If you have similar symptoms I'd recommend reading Gabor Maté's When the Body Says No. It's been my main factual source for understanding the relationship between mind and body.
Hi I have FND , I was diagnosed with it only 5 months ago & I am still very much getting adjusting to having it & accepting how it affects me . I just wanted to say thank you so much for Posting your video. I have been in a low over Easter about my FND & I can’t put it into words apart from saying your Post on RUclips helped a lot.
Hi, I have FND too, but I was diagnosed 14 years ago. With any chronic illness diagnosis there is a grieving period. Even years later most of the time you're accepting of the diagnosis but every so often you just break down about having it. It's important to allow yourself to grieve the healthy life you maybe used to have or expected to have in the future. If you don't let yourself feel your feelings it will make FND symptoms worse. Over time you'll get more used to it and figure out what helps best for you.
@@jessicab7059 thank you for your reply. I know that I have been going through a grieving process. . I think I am going through an emotional phase of adjustment right now & to simply hear someone else with FND ,say something about that they aren’t laughing because it’s funny, & Because it’s not & comment on how they feel like they are the one teaching their doctors & it’s not the other way around. I Just really related to in so many ways. It just came onto my for you page. Right at the best moment for me. It was so helpful in ways that I couldn’t find words for.
@@stevenford4719
Well, stay strong. Nobody gets it anyway. Have faith you will be fine.
I was diagnosed too. Couple years ago. It was hard. But now, I'm better. I'm kinda back to my normal life. There some tiny things that bothers me but it's still okay.
I hope you will get better soon
It's not just a rare condition - it's over diagnosed and used as a throw away diagnosis. The stigma comes from the origins that trace back to "conversion syndrome" as coined and described by Sigmund Frued. The list of symptoms for FND is catch-all so the issue with this diagnosis is that there are significant amounts of misdiagnosis and malpractice surrounding this diagnosis. It's especially problematic when a doctor hears that there is trauma in your history and then despite symptoms that can be attributed to other conditions such as PANS/PANDAS, EDS, MS and many other infections, viruses and disorders, insists on a diagnosis of elimination without actually eliminating all other medical parameters. This is where we find lazy doctors, biased or even ones that just want to get the patient out of their office.
The problem with the DX in my experience is that everytime I confront a FND diagnosis it's presented as exactly a conversion issue to drive this home the standard Treatment for FND is a referral to a Psychiatrist and CBT therapy treatment (which is harmful for autistics- my chief complaint as I've been through it and it was traumatic). I've literally had my non-epileptic seizures dismissed and literally ignored in medical settings. Finally if the medical coding for FND is explored in the US it leads back to conversion disorder and to the psych department. Imagine having all those symptoms and being told you just have to talk about it -- as treatment for Physical debilitating symptoms as you have mentioned. Lack of treatment follows this DX in the US. Any functional label on my medical chart leads to complications. Like "functional abdominal syndrome" I'm sent home and told to let it pass unless I'm malnourished - which is how I started the year. 12 hours in the waiting room at the hospital seizing and cyclic vomiting yet because I have non-epileptic seizures and I'm complex medically I'm ignored until I have to shout in desperation. Due to assumptions I had to insist on admitting me- thankfully I did, I ended up there for a week.
Personally they need names for these conditions that are introduced to the public not subtly updated from old science- due to this there will always be stigma. Just like there should be seizure specialists - not just epilepsy specialists - all seizures are judged by what is measurable by human instruments. Yet there are plenty of conditions that present with seizures that are never discussed outside of this context. It's always going to be biased
I was actually going to message you about your confidence in the diagnosis and you posted about it, I understand now that in the US and other countries it's treated very different and therefore defined very different in context. If they are going to go throwing this dx at every woman with odd symptoms and a trauma history then it creates the stigma you are seeking to eliminate.
I feel you - a lot of these sorts of diagnoses are often used by lazy Dr's to avoid doing tests, especially if someone is mentally ill. And if they aren't mentally ill, then because they are a woman or young or a POC. It's unfortunate that a very fkn real syndrome is used as a tool to invalidate people.
Due to my EDS, I have what's considered "functional pain". And I've had LITERAL DOCTORS fail to understand that this doesn't mean I'm doing well & functioning & don't need treatment! It just means that I need symptomatic pain management because [most of] my joints/muscles aren't structurally damaged.
I agree 110%, tho, that the public needs to have things explained to them rather than just updating a diagnosis. Maybe not everyone is going to pay attention, but... For the people who do, it'd go a hell of a long way to clear things up on misunderstood disorders/syndromes/diseases.
I think it depends on where you live, the quality and education of health care providers, and the model of care. I'm in MN. I've had doctors / NP tip toe around it with the code words "software issue" or :your functional symptoms" without giving me the actual diagnosis. I read my chart notes to figure it out, I asked for referrals to PT multiple times and was ignored. In that health care system, there is a focus on biological while the cultural/psycho/social aspects of the person is ignored. Chronic conditions are only given the most basic of care - alive, not living/not thriving. If you advocate for self or loved ones, if you have knowledge, or any experience in health care, it is generally not welcomed. (paternalistic bs) Switched systems, I was encouraged to be partner in my own health care, my knowledge was appreciated and the doctor was thrilled with my use of mindfulness meditation and other self care. Treated by neuro PT, she treated my symptoms like a brain injury.
@@ZijnShayatanicaI have heds to just diagnosed at 44 after 26 years CFS fybromyalgia is your pain in joints and muscles sure it's all autism causing the pain thre mcas
it’s so frustrating that FND is used as a catch all. i’ve had so many doctors mention FND to me (because they refuse to take HSD seriously and somehow don’t understand that my issues are likely comorbid to it and won’t evaluate me for hEDS) when i don’t experience ANY of the symptoms of FND. they just want to find a way to push you off to psych instead of trying to help you themselves.
Thanks for posting! I was Diagnosed a week ago and lately have been experiencing paralysis in my legs which is new for me. You are an amazing human being and I wish all the luck for every goal you want to achieve!!!! ♥️🥰♥️♥️♥️
Great explanation. It’s important to emphasize that FND is NOT factitious and there are seen differences in FMRIs between the connections between the emotion and movement centers of the brain, as well as volume differences in limbic structures in grey matter on structural mris. Just because you can’t see a seizure on an eeg doesn’t mean it’s voluntary or within the patients control! I have found somatic therapy and occupational therapy to be the most effective treatments for me, although it’s unique to everyone.
I have FND too! I’m 17 now and was diagnosed when I was 12 in 2019 with conversion disorder but it has since been changed to FND. I have non epileptic seizures and an injury from one has causes me to not have great use of my left arm. Im currently in sixth form and loving it! Life is worth living despite the seizures and slowly but surely, I am getting better. I haven’t had any migraines or paralysis since 2020 and my seizures are nowhere near as disruptive as they used to be. I’ve gone from having 50 a day to like 5 a month. I have a life outside my FND. I think there will be a day where I no longer have FND but if that day never comes, I’d be okay with it because I’m still me.
Hi, I don’t have FND, I have EDS but this was such an informative video. I did DM you on instagram about mobility aids, it would be amazing if you could reply, no worries if not. You’re doing an amazing job at educating people and as a disabled young person I definitely look up to you. 🌸
I have heds autism fybromyalgia CFS with elements of fnd all cause effect
Hiya! I was recently diagnosed with FND so thank you for making this video as it's something that I can share with others to try and help educate people on FND as in the area I live, it's completely unheard of, shrugged off as a psychological condition, or people assume that my pain is not real because its all in my head according to them. I thank you for helping me and others to feel much less alone and for a educational video that can be shared to educate others. Thank you for speaking up and advocating for yourself and for others simply by talking about it. ❤❤
Im autistic, and I'm 99% sure i dont have FND, but watching your videos is so educational, and you seem like a lovely person, Zara! As I said, pretty sure no FND here, but i do know that i have some weirdly crossed nerves. Like when someone tickles the side of my face, then the corresponding leg on that side of my body will start to tingle. Yep, its weird.
Thank you for talking about this ❤ my best friend was recently diagnosed and I want to learn so I can better support her. My goodness though, her neurologist described it as purely psychological and referred her to a psychiatrist despite her saying she wasn’t dealing with any significant stressors (I mean, aside from the stress of developing an illness of course). From how you described it, it sounds to me sort of like how fibromyalgia can be triggered by mental health issues or major life stressors but that’s not the underlying cause of the pain - there are actual neurological changes in pain signalling.
Honestly, I hope she gets a psychologist/therapist just so she can handle the effects of medical gaslighting! Geeze...
Fybromyalgia is a part of fnd
@@Truerealism747 Fibromyalgia can also really be chiari malformation…. Something I have, seen my MRI. It’s not psychological it’s physical just like fibromyalgia. I have seizures most likely from physical issues relating to my brain stem chiari malformation. Its neural tube defects from not having enough folic acid in the diet while in the womb, being built. The amount of nervous system issues it can cause are infinite that’s why neurologist and psychologist are right on top of that. When I know steroids saved me from the worsening of the hydrocephalus that had compressed my brain and built up immense dangerous fatal inside skull head brain pressure. If you ignore the brain and name it FND you’ll never get to the root issue but disregard anything possibly occurring to cause nerves to dysfunction. Sometimes whatever it is attenuate-able. Leaving it in the dark is dangerous and gives more damage symptoms issues that the doctors or therapists will have a treatment plan for that not only overlooks the issues on the nerves but paints it to be not seen just like idiopathic epilepsy. They overlook a lot as I’ve seen in my MRI check the MRI yourself. This is incredibly sad people believe in this unbelievable FND diagnosis…. Your letting damage, infection, autoimmune inflammation, compression of nerves and /or blood vessels, ruin your physical body. They said there’s nothing on my MRI like tumour ext causing my seizures but I see it myself I see physical issues not psychological. CSF blockage can cause seizures there’s also not really epileptic as they can stop after surgery for chiari malformation. I had them putting me in the same box but I don’t trust highly rated specialists networks after seeing chiari clearly on my mri. There’s cures if your looking for what to cure. Poole have had this diagnosis and really needed physical surgery went overseas paid private healthcare for spinal surgery. I see through a lot. Just like I seen my chiari and had blockage of CSF flow causing hydrocephalus. Happy steroids help cull inflammation and my head has felt better since august 2020 I even went seizure free way longer than a neurologists prescribed highly costing pills could do. I self educate and have got private imaging done. You?
I have 2 friends with FND, & I have been wanting to learn more about it. Thanks for the timely video 🙂
Also yay mushroom cushion! What creature is the grey and pink stuffie next to it?
I've been having a lot of problems progressively over the last few years and I found a post about fnd and it's the first thing I've found that matches all of my unexplainable problems. I'm glad you've made this video as it's more helpful info for me.
i'm currently waiting for an MRI and tests with neurology and FND is one of the things been brought up that i may have, this came at a really good time for me and really helpful :)
This was so validating. Thanks for posting this! I have PNES. SO many doctors, nurses and therapists have claimed that I was faking it. It is so aggravating.
Thanks for the video! I was diagnosed with FND 2 years ago. I'm in the Netherlands, and there are some treatment options here. There are physiotherapists with knowledge of FND to treat physical symptoms. There are also some expertise (mental) health facilities. Here, you learn to lessen your symptoms with self hypnosis and catalepsy. This is largely due to an organisation (stichting FNS) who does a lot of advocating work!
Yet, in the general public and mental health care, fnd is still seen as conversion disorder. I've had to educate my GP and several psychologists as well and it sucks.
For myself, I also believe it is largely psychosomatic. However, I'm mentally the best I've ever been. Most of my FND symptoms disappeared, theres mostly exhaustion left. I stopped with studying and hope and feel that with a lot of rest, I can get back to a bit more functional level. Still very difficult! But I'm keeping hope and know that FND always will be there. As you said, FND sucks but it doesn't have to prevent you from living a good life :))
a good friend of mine has fnd. thanks for helping to spread awareness, i wish we has this last year when a teacher was harassing them for their symptoms
53, ND, diagnosed 2 months ago, and this was very helpful. Especially "neurological vs psychological". Thank you!
Thank-you very much for being so brave & sharing I can identify with all of these symptoms. Please stay strong! Mil gracias.
I wanted to say you are the person who made me push for a diagnosis and I was just diagnosed with FND this morning! Thank you so much for everything you do.
Thank u! I was diagnosed with fnd 15 weeks ago so about a month ago and I also am neurodivergent and my life has been so different and stressing ever since but I watch your videos they make me feel comfortable and that I don’t need to rush to figure any answers to who I really am 😊
You put across the difficulty of living with your condition perfectly well and trust me, I couldn't imagine going through life like that so you're an inspiration to us all❤❤
I was diagnosed with conversion disorder over 15 years ago but i have had symptoms of FND since i was 9. I recently went back to school to study natural medicine and have made the Dean's list every semester. Things are easier now than they have been now that more people are sharing information and doing more research. Its easier to explain to doctors what i have now than it was 10 years ago
I had never heard of FND but found your videos really educational and love learning! also your room decore is amazing I noticed totoro on your wall and love that!
Hi, with my fnd diagnosis.. There was two tests.. Hover sign n tremor entrapment.. Glad to have people talking about this condition.. Definitely needs more exposure and to change stigma.
thank you for this video! i've learned about so many new conditions i didn't know about from your videos! you are doing so well with living with fnd.
I just want to say that you're vibe and the way you talk and laugh is actually really awesome because, as someone with a recent FMD diagnosis, sooo much of what you can find online or just in general about ANY disorder or illness is either very academic medical talk or dramatised and scary. Stigma. So to see someone who is just so normal and can talk about these things eloquently with jokes dropped in is so comforting.
Thank you very much for your video, it is a very comforting discovery for other people, since it helps us better understand this pathology. I send you a hug and always remember that you are strong!
i was diagnosed 11 months ago and this is the most information i have found about FND thank you zara keep doing what your doing hope you have more better days than bad
I Have FND and I was also told it was a software problem rather than a hardware problem! Since I didn’t know what they meant by that they told me simply put. my neurons miss fire. Which causes my symptoms like convulsive functional seizures, Atonic seizures (drop seizure), dizzy spells, memory issues, appetite, etc. What FND is, is literally a huge umbrella term. And from what my doctor told me. The only way to develop it is through physical trauma or emotional trauma. Many people don’t know how common this Disorder actually is! Like it is very common but also misdiagnosed… so it sounds rarer that it actually is. I also get people at my school asking does it suck that my life has changed so much, and I usually say something along the lines of. “Yes, but I am more thankful for the things I have, vs what I have lost, but it does take a toll sometimes.” I used to take everything for granted and I acted as if everything around me would be there forever… in the recent months that has changed and I realized I was selfish. I have learned to love and cherish what I have. And actively tell others to do the same. Anyway, I hope I educated you guys, and sorry about my little rant haha take care guy! ❤
I was diagnosed with fnd in October because I suddenly got weird weakness and shakiness in my legs. Slowly getting stronger and using mobility aids but my fatigue is the worst. When I qualify as a nurse I want patients to know that I know what living with a multiple chronic conditions are like ❤ but I need to appreciate Zara so much as I never knew of anyone who had fnd and the doctors were acting like I’d never see someone with it, but now I’ve seen a community of people with fnd. Thankyou zara so so so much ❤❤❤
had tons of seizures in & out of the ER then finally had an overnight neurology sleep/wake cycle in hospital stay & the neurologist tells me “good news you aren’t having seizures 🎉 “ …”well not epileptic seizures! *hands me ‘PNEE’ pamphlet* “ kept referring to them as “events” although they are literally seizures & the term events sounds like some paranormal BS. Neurologist recommends me to see a therapist although i have seen 6 throughout my teen years until adult hood even recently & have worked through all my trauma i am genuinely the happiest I have ever been in my life for the past year or so even prior to getting the PNES diagnosis. No matter how much i assure them I am HAPPY the neurologist continues to tell me “Well a lot of patients don’t even remember the trauma they experienced to cause this so it could be something u don’t remember” anyways i’m now seeking a therapist to deal with the Recent Medical trauma / CPTSD i now have from being gaslit by so many medical professionals. I have also reached out to my primary physician for a Hypermobile Ehlers Danlos Criteria Checklist for me to complete the next visit that I have hopefully 🤞🏻 Although I do relate to 100% of the symptoms u listed of FND, I also think I have HEDS which would explain the Chronic debilitating joint & tendon pain I have every day, bowel issues, consistent ingrown toenails & a ton of other things 😥 moral of the story is SELF ADVOCACY is SELF CARE & SELF LOVE all wrapped into one❤
Ive got FND! I was diagnosed at 14, Ill be 15 in a week. It started when I was 12. I definitely get the single limb weakness, locking, or involuntary movement. If I don't take care of it then it'll go full body. My left arm goes first before a full body weakness episode like 99% of the time (as you said a drop attack or sleep attack). Brain fog and visual disturbances come before the slower ones, along with anxiety sometimes if I can't get somewhere safe. There are the sudden ones too. I get tics from the cold or random sensory disturbances, however I do not have tourettes. Other tics can also trigger mine or I'll mimic them. I can go nonverbal if I get too stressed sometimes, and also after a bad FND attack. Spacing out and or absence seizures are another thing I get from stress or a bad sensory feeling. I definitely have chronic fatigue, not sure about pain. FND is hard to deal with outside of home, especially at school. I've luckily got friends to carry and assist me in school since I havent got crutches or a wheelchair. The school is much too small for that, and they dont understand very much. I wish there was more awareness so that the teachers that dont talk me seriously would, but there's just so little out there they don't tend to take me and the illness seriously. My mom is the only reason I got diagnosed as quickly as I did. Somethigns that help me come back are a quick strong peppermint smell, icepacks on the wrists, and music. Of course everyone is different in that area, especially with FND. :)
i followed you a long time ago because we both have tourette’s and i was recently diagnosed with FND, i’m so happy there are others sharing their journey 🫶
I really enjoy watching your videos and I think you have a lot of charisma and a wonderful outlook on life. I have enjoyed learning about FND and neurodiversity through your videos. I don't personally know anyone who has FND or is on the spectrum, but I like to educate myself about these things because I want to be able to understand different people.
Thank you for making this video! Lately I've been having a lot of symptoms of FND, and this has really helped. Planning to talk to a doctor about it this week!
i hope you can get the answers and support you need!
Thank you for this video! I just got diagnosed with FND today and this helped alot.
Now I know the name of my "weird neck thing" 😂 I have been diagnosed with FND for 4 years now and for the past two my neck has "dropped" my head and I can feel it coming just like you described. My husband calls my tics my "split second breakdance" 😊 a little humor goes a long way. I appreciate you talking about this because I was really struggling with my most recent flare and gaslighting myself about it. No having great medical care opportunities with FND is a true struggle and one I just don't understand.
I have an FMD (functional movement disorder) different obviously but it's been a comfort for me hearing your story and just seeing a little part of your everyday life.
I really appreciate all the Contant you make regarding your experience with FND. I was diagnosed with it about 10 years ago. I was sent back-and-forth between many neurologists and psychologists. The neurologists would claim that it was undealt with mental health issues and despite working through everything I could think of in therapy, the FND symptoms never fully resolved I have learned to except my symptoms most days and have a good life that I am happy with, but I still feel shame around the diagnosis. And your videos help me a lot. So thanks.
I was diagnosed with FND in September last year, and although my FND isn’t very disabling because my symptoms are more sensory (pain, electric sparks, pins and needles) this video was really nice to see! No one around me has been diagnosed with FND so it’s nice to have evidence that you know, other people do have it.
Oh weird life! So many thoughts nearly going through my head. As a child, parent died in a shooting accident, run over by a car, badly burned in a house fire. Trauma yes! But I have had muscle spasms all of my life. Sent to Child Guidance. Which has been worse, maybe the life long muscle spasms have caused more suffering. I for decades thought it was psychosomatic. Yoga, meditation and other stuff did not work. I am over 60 years old. Diagnosed with Dyspraxia in the 90s. Recently diagnosed with Autism, HEDS, and FND. I posted on an EDS Facebook page and plenty of people said spasms and spasms. So what is it all about folks. I am still learning. In the 90s I trained as a Counsellor. Could not do it at a professional level so went back to Uni to study Biomedical Sciences with an ambition of researching mind body relations. Why did I do that?
Have a second appointment with a Neurologist in a couple of weeks and a Rheumatologist soon.
Who am I? who are we?
Your channel is wonderful and you are doing such a great job talking about all this. I wish you all the best for your life.
So have you got fybromyalgia symptoms the autism in causes the fnd especially if your hypermobile OCD I have heds to fybromyalgia CFS with elements of fnd
@@Truerealism747 Hi I don’t have fibromyalgia. I saw a neurologist last week and he said FND common with Autism. He also said there was no treatment.
Pfff that sounds like a lot to deal with! Thank you for explaining it and let's hope more doctors will start recognizing and learning about it, so they can actually offer support.
Hi Zara!
I started to have symptoms 1 year ago as of today (it is Sunday evening in Melbourne Australia). I started to experience tics as part my anti depressant medication Zoloft was increased last year by a psychiatrist in a psych ward.. I thought my body couldn’t handle the higher dose.
The tics started out as mild and gotten worse throughout 2023 until in January this year. I was getting weaned off the medication under the guidance of my psychiatrist. The tics stopped once I was fully off the medication.
Until I started having these seizures out of no where while at work. After a video recording EEG I did at the Royal Melbourne Hospital, I was eventually diagnosed with Functional Seizures in February by my neurologist. I was shocked because I didn’t even know what it was until I did a lot of extensive medical research to learn about it. (I have ADHD and Autism)
I’m from Melbourne, Australia and there is a newly established clinic at the Alfred Hospital that’s dedicated to Functional Seizures - first of its kind in Australia and around the world. I was at an appointment last month and spoken to one of the neurologists at the clinic who knows so much about FND and Functional Seizures.
I have a background history of trauma and mental health. I have generalised anxiety disorder, Bipolar II etc.
The neurologist at the clinic told me something that is really interesting.
The reason why people are having functional seizures is because you are suppressing your emotions deep down that you aren’t able to express them normally, instead it manifests in a physical form.
I lose consciousness when I have my episodes, my brain disconnects from my body because my nervous system has trouble sending signals from the body to my brain. I become paralysed as I can’t feel my legs and I end up screaming and crying. It goes for half an hour my episodes. I feel disoriented, dissociated and emotionally upset after these episodes occur. I start to notice that my limbs get weak, I find it hard to get out of bed to do daily things. Etc.
You can see a neuropsychologist and neuropsychiatrist to treat the seizures as for mine is trauma related. I can recover from it, as for the physical symptoms that started recently I will have to see a neurophysiologist who specialises in FND. Now? My body starts to shake and have shivers/tremors even though I don’t feel cold. This happens every 2-3 seconds. I’ll be speaking about that to my neurologist at the clinic.
I have FND - Functional Seizures are categorised under the condition as it is not a seperate illness. As the neurologist explained it to me at the clinic last month.
Hi Zara, thanks for sharing your experience with FND. I don't have FND, I have epilepsy and face some ongoing challenges, including medication side effects and having to avoid certain triggers. I also deal with learning challenges like mixed expressive receptive language disorder and dyscalculia. It's encouraging to see open discussions about neurological conditions. Keep up the great work!
Me gustó mucho el vídeo, yo también tengo FND, es una lucha diaria, te mando un abrazo 🤗
After this, all I want to do is see a neurologist asap. My current diagnosis is post viral syndrome, with chronic fatigue, the occasional vision/speech problems, uncontrollable tremors and particularly leg jerks, IBS, the left side of my body is a lot weaker than the right... Conversion disorder was mentioned to me but never FND, and even that was replaced by the "it's long COVID and we have no idea what's actually happening" diagnosis.
I was wondering if you could make a video about how best to communicate with /help those who are neurodivergent or disabled without being disrespectful or patronising. Thank you! Love your videos ❤.
had never heard of FND this video so you're definitely spreading awareness to people who didnt know before! The way you talk about it reminds me so much of the way I talk about my DID. Both rare disorders that arent actually that rare with doctors who know less than you. I've often thought about offering new therapists an hour that I dont have to pay for where they can learn and ask me questions to help them understand how the disorder works. Cause otherwise I just have the spend the sessions I paid for doing that 😂
It's so good to hear that more people are learning what's going on, though. One of the hardest parts about these kind of things really is trying to figure out what it means. To have a word to explain what's happening to you. Even if other people dont know what it means yet, we do
Wishing for many easy days for you
erm, hi! me again :3 love your channel, keep up the good work! ❤
AA IM CRYING A HEAR FROM MY FAVOURITE YTBER
Wow thank you so much, a friend of mine has this and I’m trying to educate myself better
so glad it was helpful!! 💖 it’s really lovely you’re trying to learn more for your friend :)
@@Zara_Beth a lot of your videos are really helpful for me, your actually the reason I chose to do an awareness poster about Tourettes as well as helping me come to terms with the fact that I may have to become an ambulatory wheelchair user in the future (Doctors are trying to get me diagnosis for a joint disorder which makes it painful often to do normal tasks) your a real inspiration for so many people❤ keep being your wonderful self :]
so very well done for talking about this..i , have ,asperger syndrome..m.e .and fibromagyia the list gets lot longer,mark
Nicely done! I have the subset PPPD (Persistent Perceptual Postural Dizziness) of symptoms where stimulating environments (visually complex, noisy, flashing lights, movement) can make me feel dizzy, balance/gait issues, sensory (tingling, numb, pressure/pain, ground feels sponge-y), and headaches. Left sided issues are very common (my own and from reading), I'm not sure why though. My symptoms have faded a lot over the last year, thankful to have a very flexible life to try different approaches on my own. The glitch is still there, lurking under the surface.
Hi I have just found your channel and you are awesome and amazing and are great thank you for spreading awareness about differences
Thank you so much for bringing more awareness to this!! I can relate to doctors not knowing about your condition ): I have a genetic brain disorder called 5-HTTLPR, but I basically have a short serotonin intake gene. What this means for me is that my brain doesnt fully know how to absorb serotonin properly. my serotonin receptors are lacking these tiny little tube like things to absorb the serotonin which for me leads to problems like prolonged depression and anxiety to digestive problems and sleep problems. I often have to explain what it means to my therapists and doctors. it also makes it hard to medicate me since SSRI’s dont really have an affect on me since even if im given the extra serotonin my body just cant absorb all of it. it stinks having to educate the people that are meant to be helping and educating me!!!
I was diagnosed last year and my main symptoms are seizures and tics but I've also had rare instances of muscle tremors and I've been feeling a little weak lately in my legs but luckily those things haven't progressed. For my tics they act like Tourettes but I didn't get that diagnosis because of my age being 19 when they started. So like there's a chance I could have Tourettes but overall they said it's probably more likely to be due to FND. Anyway yeah I really appreciated this video! I'm glad they are researching more as well. My symptoms seem "small" but I also experience brain fog and chronic fatigue and things that affect me daily along with being autistic. I understand not being able to drive and stuff and how we have to adapt and I'm still unsure at 22 where to go with the whole work thing.😅 Anyway! I hope everyone with FND knows they are doing there best and it's not all in your head!❤
Hey Zara nice to see a new video 😌😌
Hi zara, are you planning to ever talk about ocd and whether you consider it a neurodivergency? I would reallly love to hear your ocd story.
I have FND and NES seizures are my biggest symptom but I also get dystonia. I've had dystonia lock outwards rather than curling in all the time. In my hands its easiest to visualise on yourself as spreading fingers as wide as possible and then tensing while fingers are in weird positions, and then it stays for 1-12 hours. I personally prefer this one to when it curls in before locking up because I can still kinda do stuff
I heard from my mum (who has gone through a lot of medical stuff for her own issues) that FND is a diagnosis of exclusion, meaning you usually have to exclude everything else before saying it's fnd. which may be another reason why it isnt diagnosed often.
it used to be, but recent studies are showing more signs directing to FND which means diagnoses should be made due to positive signs of FND rather than a diagnosis of exclusion like it's historically been :)
You are an amazing person ❤️
Good morning, Beautiful! Your new video is great, drawing mostly from your first hand experience with FND. I have heard, somewhere, that the field of medical science may never completely understand the human brain and body. It's that bit of mystery that keeps science looking into disorders, like yours
BTW- I love ❤️ your red tabby on your bed! What's his name? The house I live in was my parents' home and there are three elderly girls and two 5 year old boys. Ninety five percent of the time, everybody gets along.
I do understand that you have your daily struggles, but please, do your very best to keep things positive. You know,for a fact, that you are loved by so many of us. Always hold that close to your heart when things go from trying to near impossible. You WILL get through this!
I am in the process of figuring out a diagnosis for involuntary movements during prolonged periods of reading. I had a 72-hour EEG done to see if I have epilepsy, capturing 38 different episodes. Not one of them yielded abnormal brain activity. So I am in the process of releasing this information to my psychiatrist. Hope I can find answers soon. Thank you for educating people about this condition!
Very interesting to see how many of fnd symptoms overlap with my brain injury (a couple strokes ) symptoms the symptoms that I have previously experienced and currently still do ,, sounds tough then happening unprompted but I am glad that there are other "youths " that are experiencing similar symptoms and building a community
Thank you for this video. I do NOT have FND. I have ADHD. Thank you for sharing your experience with your diagnosis It helps people feel less alone.
(not saying FND and ADHD same because there not.)
but I love learning new information from your channel. Especially because I want to go to collage to be a Doctor(Or marine biologist).
Your videos are always so educational and inspiring. So Thank you🫶
[I also love your cat!]
I have a physical disability that can cause pain but it doesnt affect me how you do but it is still very cool to listen to you talking about these thinga.
Thank you for this video.
I love seeing someone like me!!!!!!
I've had PNES for 12 years. I just got an e-scooter this week and my goodness it has boosted my independence so much.
i love how you're so brave and open to sharing about your disorders. you are so inspirational and resilient. thank you so much, Zara, for sharing. 💖
also, i just love that mushroom cushion in the background. where did you get it?
thank you!! ☺️💖 and the cushion is from Tesco haha!
@Zara_Beth hi, i had a look on tesco but i couldn't find it. would you mind sending a link if there is one? thanks 😅
Hi, Im Judah. I am 17 and from the US. You have helped me so much through this journey and I feel so understood. I've also had symptoms for 4 years, way before I was dx and medicated for any mental illness, and it hurts because everyone dismissed it for sport injuries and muscles being tired. I was dx with FND last year after I slowly became paralyzed over the course of a few months. I had very small episodes of paralysis but they went from being minutes long, to hours, to days, to weeks, now month. I have been a fulltime wheelchair user since June of last year and my doctors think that just because I walked "normally" one time a few weeks ago, that i can control my paralysis. It lifted for 3 hours then came back on without warning. They dont understand that me walking those handful of times couldve resulted in catastrophic injuries because of my symptoms that come on suddenly. Basically, I have had little to no control of my legs for the past year and my treatment team dismisses all of my problems. It is so frustrating because i am almost 18 and i need my own custom chair before i go off because i cant be independent in the standard one and i keep hurting myself. They think that they should take my resources away. they dont get it how i was able to walk a little. they deny medical appointments, treatments, and devices. what should i do now?
my first symptoms were tics, they were thinking tourettes but my grandma told them not to dx me with it for some reason and they signed it off as anxiety tics. then chronic nerve pain, then passing out, then paralysis, now seizures. my main are also paralysis and seizures. I've had unexplained GI issues for 3 years now, urinary incontinence for about 1 years, plus I've been clumsy since I was a small child, which they think could be related to another condition, but they refuse to test me and say that all of my newer symptoms are just because of my FND and its not serious, even though I cant eat without pain and nausea
Hey Zara,
Keep up the good work and educational video's. Your doing good💖💗
Also, you look very nice!👍👍
Greetings from The Nederlands🥰🤗
Thank you for this educational video. I don’t want to sound pushy and I completely understand that university is not necessary, but after what you said about thinking you’d be at university now, I just wanted to praise the Open University! I’m in my third and final year of my OU degree, having chosen to do a degree online with them instead of going to a physical university due to my mental health, and it’s been great. There’s so much flexibility and they’re really understanding of all life situations, so just if you ever did want to do more studying, even just short courses, I recommend the OU 😊
i've had a research and seen OU - if i ever do decide to do a degree (i currently don't think i need to and will happily continue with my current job) then i'm planning to do it online with them! :)
I always admire your beauty and strong personality Zara❤ love watching your Vlogs ❤ I'm from Philippines 🇵🇭
Hi Zara! I suffer from fnd symptoms, and I'm trying to get a diagnosis, and I have a question. (Sorry if you can't answer, it's confused me for a long time) Can fnd be genetic? My dad has fnd, and he's pretty sure I have it too, especially since around the start of my new school, where my symptoms were a lot worse. Keep up the good work
Lovely video!
Finally, hopefully, catching up!
Not every doctor is going to know about every possible thing there is anyone can have or be.
There's something else too, not recalling what it is, when ones body appears to be, basically deformed.
- I've been watching "Unsolved Mysteries," a show that hasn't been airing ew episodes for a while now. One of the most recent episodes I watched was about a girl who, one day, was riding a horse, and fell off - seemed like the horse was spooked from something. At first she seemed fine, but then about 10(ish) days later she collapsed as she was finishing showering. She was in the hospital, not able to feel her legs, for about 1 1/2 weeks. One day she, 'heard a voice,' telling her to get up and walk. Knowing she could, she went ahead and was able to move her legs, get up and walk. Whatever it was that happened after she was nearly knocked out but seemed to have gotten through it somewhat quickly... Maybe she developed something that went away.
This is an example, though, of the possibilities, even when known or claimed as minimal to 'not at all,' that can happen.
The one thing I have, that you have too... No cure, but medication is available for it and I used to be on one... My severity as a child and into my teens was worse than as I grew into my adult years.
Your cat is adorable
Thank you for the video
Yay! Early Squad here!!
👇❤️✨🤪🌸
AHHHH YOU POSTED! I love you so much❤❤❤ first can I be pin?
Yay top 124 and top 26 likes and comments. Thanks for making this video. Best to you and your family.
Clicked on video 1 hour after it was posted. 9:30 a.m., April 13th, 2024. Watching from Maryland.
Hey from Chicago, Zara you have an awesome channel, I was just diagnosed with FND and you helped me understand what is. Thank
I don't have FND but I sort of experience the wrist "locking" when I'm overstimulated except it's not totally stuck, or maybe it is I'm not sure. I just contract it a lot with stress and it goes with other symptoms like not being able to talk, zoning out, "meltdowns" and I also stim a lot during these (I may have autism)
Nearly cried at the sleep attacks! EXACTLY what happens to me. Body becomes limp but I can hear everything. My family says it looks like "my battery died"
I’ve had this for years. It stinks. Support to you
I’ve got autism and I found this very helpful and useful and I’ve got the ADHD aswell. I’ve got the sunflower 🌻 laynard too
I don't have FND (hopefully), but I’ve dealt with dystonia in my feet and jaw before. Man, it hurts! Luckily, my locks only last a few minutes each time. Can’t imagine it sticking around for days, damn.
Yeah from what ive heard conversion disorder and fnd are very different things
can you please explain the difference between tourettes tics and FND tics?
for example do FND tics feel or present different from tourettes tics?
Got diagnosed over the weekend and while in was expecting this to be the result based on other tests, it's hitting me hard and I'm not sure how to move forward other than the private therapy that I was doing prior to this.
It must be so hard living with a condition like FND and with tics that can trigger it is way worse! I wish you all the best in your daily life and I hope you will struggle less with it in the future 🧡🏵️
i was wondering if drop attack (the slow ones) feel like you’re slowly melting or falling asleep while being fully awake? i’ve had those for the past few years but thought it was just my chronic fatigue 0-0
May I ask what medications you take to help lessen the symptoms?
I have tics not exactly diagnosed with Tricia. I’ve had this for a bow half a year. I’m gonna go to neologist in May and having is really hard my teachers don’t believe that I have them they say it’s usually really visible so I don’t have them, but they don’t really pay attention to me. Enough for to understand that I have them.
the first time i had uncontrollable muscle cramps and numbness in one side of my body i thought it was a stroke. people don't realize how scary and real this disorder is even more because not even doctors understand you and you don't feel seen. we don't make it up. the brain and body are okay, yes, but they don't communicate properly and there are problems with how the nervous system sends, receives and processes signals.
Hi. I am going thru heart problems
I am on 10! Meds a day. I have never had such fatigue and headaches. Staying home and sick is making me depressed. How do you deal with depression when you're sick? I just got a therapist.