Okay 2 things that I have to share - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Okay 2 things that I have to share

Daesin
Daesin

One: I have learned a very valuable tidbit. The four + months of chronic bppv is probably what sent me into this new adventure. I am Thankful to Professor Jon Stone, all the way across the pond for his input.

Now the second part of this is a little more embarrassing. I'm really hoping it's known....I don't advise it, but is it known?. Has anybody else ever shot themselves out of a chair because their leg/back went into a spasm?

I wasn't trying to stand up. I wasn't trying to do anything. My body jolted so hard from my toe, through my back and into my neck that I literally landed on the ground from a seated position.

No one saw thankfully & nothing but bruises. I feel as if I am living in a world where not just the language is different but basic physics no longer applies either.

Blessngs to you all.

17 Replies
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Daesin ... Prof Jon Stone isn't an ENT so I am not sure why he is someone you'd want input from re BPPV. I'd be interested to know what theory he has that suggests that months of BPPV can set off a core psychiatric disorder.

I feel for you over that spasm and hope the bruises heal soon.

I loved what you said about living in a world where not just the language is different but basic physics no longer applies either. I don't have 'fnd' but have never been able to get a straight answer out of anyone regarding what 'functional' means ... *sigh*.

Daesin
Daesin in reply to 210272

Happy Valentines,

Thank you for the reply and the question. We have to share resources and information. We don't need to reinvent the wheel if somebody already has that squared away. Energy is far too precious.

Although I have been seen by an ENT for bppv, no, I don't believe that he is an ENT. His credentialing is listed as Professor John Stone, professor of neurology department of clinical neurosciences. NHS Lothian center for clinical brain sciences University of Edinboro Western general hospital. He was kind enough to reply to my general questions during a recent forum.

I asked had he ever seen a case of FND triggered by severe bppv. He responded unequivocally, "yes FND can be triggered by almost any medical condition. I have certainly seen it triggered by bppv. Acute vertigo is a very alarming experience, especially when you don't know what's causing it."

He has been researching this FND for many years and has some wonderful lectures on YouTube. He does some work with fnd hope as well. I can't say that I totally agree with this dx for myself or understand all the tidbits, but I am desperately trying to learn and survive in this hard new world. I have so much to process.

Best of luck on your quest for healing and answers.

210272
210272 in reply to Daesin

Interesting - thank you. I'm not entirely sure he's grasped the concepts of correlation and cause but hey, it's good for his figures if everyone buys his stuff.

I'd urge caution however because the diagnostic processes for 'fnd' are very woolly and it's being over diagnosed and misdiagnosed due to confirmation bias. Stone is aware of this and was, apparently, due to discuss it at a meeting in Edinburgh last year. But if he has come up with a strategy to prevent this repeating on us, ad nauseam, I would have thought he'd have posted it here by now. Guess I better watch this space ... although I am not gonna hold my breath ;)

Thank you for your kind words and wishes for my luck. I am in the extremely fortunate position of having a rare neurological condition which can be treated, thanks to some awesome researchers coming up with the answers.

210272
210272 in reply to Daesin

Daesin - the more I think about it the more I am concerned that your self-diagnosis of this core psychiatric disorder has been unequivocally endorsed by Jon since I am not sure that this is good practice when it comes to the recommended way to diagnose this condition (although these recommendations do seem to vary a lot - we need a gold standard, asap). I wonder if he took the time to send you any papers about BPPV, such as this one: ncbi.nlm.nih.gov/pubmed/293.... If he didn't, I wonder why he didn't.

Daesin
Daesin in reply to 210272

Sorry about the delay in response.I feel blessed to have folks sending heplful info my way. I will never turn down positive energy,

I guess I didn't communicate very well. Let me try again. I just spent several days in the hospital at Indiana University. During this time I was experienced a complete neurological and physical workup. At that time I was diagnosed with fnd as well as fmd.

So this isn't me just googling symptoms and trying to find something to fit an agenda in my own head. this is sadly something that multiple specialist have now said I am facing. And I am Challenging this diagnosis. I am trying to learn everything that I can.

I do not accept that some demon from my childhood has snuck back up and leveled me. I'm not saying that I don't have experience with childhood trauma, but after years of therapy during my youth, and ocassional checkups over the years I can absolutely say that my dragons are gone. So to be told by a neurologist, an Ms specialist by the way, then I would have to seek out psychiatric care..... oh, well that is a little difficult to swallow.

During my research I kept finding correlations between vertigo and fnd. But I was unable to find a direct connection, or anyone who had even considered that one opened the door for the other.

I absolutely understand now that this particular researcher is not approved of on this form. And I greatly regret mentioning his name. But no one has gotten a dime from me nor has anyone asked. I outlined exactly and precisely my communication with him. I didn't ask any other information. I already have four and a half months experience of living with bppv.

I apologize greatly if anyone believes that I am endorsing any treatment doctor hospital or dance move. I was just hoping to talk to people who had information. I was trying to find support. This is a really dark place.

I was simply trying to find out if it could have been a physical trigger. and in my little twisted brain right now if it was a physical trigger it is a little easier to swallow. So if that makes me crazy then bring on the squirrels. I do apologize for any undue distress that I put on anyone.

210272
210272 in reply to Daesin

Daesin - thank you :) Hats off to you for facing those dragons and getting shot of them. That's good medicine and, to me at least, it is indicative that it is unlikely to be trauma that is causing your current issues since you know what that feels like and how to deal with it effectively. If your brain is twisted, I'm an octopus ;)

Meanwhile my concern is that 'FND' (and possibly 'FMD') is being over diagnosed which can lead to other conditions/causes of illness being missed.

VeDA (the vestibular disorders association) is a great place :) I hope Jon recommended them since they get fantastic approval ratings from patients.

Don't worry about naming names - Jon does seem to care but he's done naff all to stop the over diagnosis of 'fnd' and PPPD (his other pet project) even though he's known about these issues for ages. So I find it hard to trust him.

Hidden
Hidden in reply to Daesin

Don’t apologise please Daesin. We only express concern because to me and to ...(not good with numbers) this looks like a neuro vestibular disorder. I think we are both concerned that research via Jon Stone, will only take you to ‘FND’ - where your research should be taking you to physiological conditions which are either rare or are rarely diagnosed.

Have you checked for all systemic autoimmune diseases with input of a rheumatologist yet? It doesn’t matter how grand your hospital thinks it is - they are still very ignorant about diseases such as Sjögren’s and MDds.

You’ll have to research the latter yourself but here I’ll post one the most wonderful medically trained woman’s blogs about Sjögren’s. And she’s from the US so if there’s anything about this autoimmune disease or related ones eg Vasculitis (which absolutely can affect the vestibular system and ears) the American Sjögren’s Syndrome Foundation is well worth checking out. As is Dr Louise Oaklander neurologist - see YouTube link on a post furtfervup by Scrumbler.

sjogrensadvocate.com/sjogre...

Hidden
Hidden

The thing is Daesin, that if any illness can trigger a functional/ conversion disorder, then that’s one thing.

But it’s quite another to assume that any medic in any specialism can be sure that these symptoms are functional overlay, when all of our bodies and minds are so very complex and when there are no clear diagnostic tests to determine whether something is or isn’t functional?

Professor Stone kindly also attempted to answer this question when I asked him once by email - mainly because I was challenging his premise, as a mere mortal on the ground, in the context of over-diagnosis and misdiagnosis of ‘FND’.

I found his response not only woolly and inarticulately expressed but also slightly chilling. So for the sake of my own wellbeing I declined his offer of further communication because so far I have found that every symptom that has ever bothered me to any degree has always transpired to have a biomedical basis. So why on Earth would I automatically place my trust in doctors when, over the centuries, so many have been found to be misguided or even downright dodgy?

I may be doing my only research as a lay person with lived experience 24/7. But I think it’s important to remember that every doctor is as human as I am and that they can choose to use their power wisely or they can sometimes use it egotistically and for their own ends.

I also like to remember that every doctor is someone’s patient and someone’s child. So someone knows as much about what makes each doctor tick as this doctor presumes to know about me.

So, based on experience, those doctors who deem anything and everything they can’t understand - to be functional - probably in fact have something functionally wrong themselves ie classic projection.

So perhaps it is in fact they who have messed about with a universal language and their doctor/ (honorary) professor status has mesmerised or hoodwinked or gaslit us into forgetting the rules of basic physics - a bit like Kaa in the Jungle Book sating “trust in me” ... telling you over and over that your malfunctioning software just propelled you right out of that chair unbidden? 🧠👀.

And eventually any of us would be capable of imagining that every single symptom we experience, from heart attacks to strokes to cancer to autoimmune diseases to either be functional or causing us to have functional responses. In just this way our trust in our own hard learned instincts will have broken down and been replaced by Kaa the great doctor saying “trust in me - it’s just functional” 👨🏼‍⚕️🐉🐍🤷🏼‍♀️

Daesin
Daesin in reply to Hidden

I absolutely agree that we must think critically and turn every stone over that we can. I am trying to listen to my body. I am trying to listen to the different doctors and opinions. I am trying.

The chronic bppv I believe is trigger for what's happening to me now. My attempt to research any correlation is hampered by my ability to read for very long. But I am not holding anyone up on a pedestal or believe anyone to be infallible. I have had so many conflicting suggestions and shrugged shoulders...they 'practice medicine.'

This is all still very new to me. And I'm trying to understand what is happening. I don't trust 100% anything that comes out of anybody's mouth. Honestly I'm still not even sure how much validity I put into IF this diagnosis is accurate for me. I just havent drank the koolaid. The neuro (a stranger who walked into my hospital room) who diagnosed me was not able to convince me of this dx and we parted ways on that disagreement. He is regarded highly in this area (I didn't vote on that one).

Stone's response that this could be the trigger falls into my current thought process. I know that my world ended with the vertigo and I have spent months in hell. The vertigo was the only trigger that I experienced. So I'm trying to determine how it has impacted my life, and how to adapt. I won't see My local neuro until March and primary has never dealt with this issue. I can't just go see another doc as we are horribly rural.

I was pleased to learn about this forum and I hope to continue learning from all of you.

Blessings to you all

Hidden
Hidden in reply to Daesin

If you feel that there is a psychosomatic/ conversion difficulty at the heart of your neuro symptoms then it’s not for me to say this is wrong. But I would just point out that every time Stone’s theories are lauded or affirmed by people who buy into the conversion disorder concept then those who cannot recover from these symptoms will only be made to feel even more like failures and hypochondriacs.

After all those who benefit from the few therapies people are eventually offered for FND and do feel recovered, probably didn’t have anything that much wrong with them to begin with. They can credit Stone, Edwards et al all they like but actually statistically there’s a good chance they might have recovered anyway.

Lastly I just wonder what exactly you feel caused your BPPV to begin with? Maybe if you could identify the trigger for this condition you could also identify triggers for subsequent problems? I had BPPV when I was in the first trimester of each of my pregnancies - figured out it must relate to morning sickness hormones.

Vestibular conditions can be the consequence of so many things that aren’t functional. I can’t believe your doctors have yet excluded all rare autoimmune diseases, Lyme, viral encephalitis, MDds, some form of Vasculitis, Cogan’s - just to name but a few .

For example I was told that my constant tinnitus was probably the result of high frequency age related hearing loss. Fair enough. The ENT ran a sinus CT just to make sure nothing untoward was going on apart from my Sjögren’s. Nothing showed to explain other sensory symptoms Jon Stone lists as clsssic FnD eh left sided facial numbness.

However a year or so later I developed a pulsatile tinnitus following a severe cold. Also I suffered labyrinthitis. I was referred back to ENT specialising in balance disorders. He ran a whole battery of vestibular tests on me but nothing showed at all.

However he wrote to me saying that he had reformatted the sinus CT imaging and discovered something called a high riding venous bulb on my jugular vein which he said would explain my pulsatile tinnitus. It’s an untreatable congenital structural abnormality apparently - one that seemingly doesn’t affect my balance ... and yet...🤷🏼‍♀️

Similarly my new rheumatologist has just discovered I have a thoracic scoliosis from which I’ve probably had since I was a teenager. Again - might this explain some of my unexplained symptoms 🤷🏼‍♀️

A friend who shares my rare neurological presentation of Sjögren’s and has other conditions was diagnosed initially by Jon Stone with FND. It later transpired she too had Sjögren’s and Scoliosis plus MG (I can’t spell this sorry). She went back to him and made him retract this diagnosis, threatening to complain formally. He tried to fob her off with overlay etc but she wasn’t prepared to accept this at all. We are all too complex for such simplistic overlay explanations? How can he possibly know when neuro symptoms are the result of a non neurological process? Answer he can’t therefore he shouldn’t be using his FND tests out of context or be using the term functional. Just because neurologists can’t find answers it doesn’t mean they can make unscientific, euphemistic ones up!

So please just be very wary about praising a doctor you’ve never met just because something he has said written has struck a chord for you personally.

artmom
artmom in reply to Hidden

At a recent GP visit I mentioned the ‘success’ rate for cbt ‘successfully’ ‘treating’ fnd is 13%, (as I remember it according to Stone site), surely a very low success rate. His reply was ‘’well it’s good that 13 in a 100 felt better’’. Maybe the people who benefit didn’t have much wrong with them or maybe they weren’t really made that much better. Or maybe they were in some kind of remission and possibly get worse again...whether that will be counted within the same statistics, who knows. I do know that every time a test of some sort comes back normal I start second-guessing myself and try and convince myself nothing is wrong and ‘oh why am I denying I’m a hypochondriac’.

Hidden
Hidden in reply to artmom

Well as I think I’ve told you before 30% of people with Rheumatoid Arthritis and Sjögren’s have nothing showing in their blood. Almost all of those with psoriatic arthritis and Ankylosing Spondyloarthritis are seronegative ie nothing shows in tests. On average it takes 4-7 years to get a diagnosis of Sjögren’s, same with Lupus. This is why I get so furious when doctors try to tell patients that if tests are normal then nothing is wrong?! X

Orchard18
Orchard18 in reply to Daesin

Hi Daesin,

I’ve just read this thread. I’m really sorry to hear about your vertigo problems. Vertigo is just horrible and I really sympathise with you. You have had such an awful time if it.

I just wanted to say that to my mind, my current diagnosis of FND, which I’m not too sure of, began with a flu-like virus which left me with labyrinthitis 15 years ago. After that I kept getting vertigo every time I was ill or tired/stressed and run down. It then seemed to develop into pain around the left trigeminal nerve area, inner ear and left side of my head. I had Bell’s Palsy and weeks off balance. This all led to scans and tests and different diagnosis from bppv to Ménière’s. Over time, attacks became more frequent and usually lasted 6-8 weeks but initially presented like a stroke. I’d lose or slur speech, couldn’t move limbs well or coordinate and the side of my face would drop. The first time stroke was ruled out I was told it was hemiplegic migraine, then the second it was that along with basal stem migraine. Finally I was told it was a weird kind of migraine with vestibular symptoms. I’d found the vestibular disorder site myself and was trying to find help myself so thought it could be that and I tried all kinds of self-help.

However, last summer I’d had a lot on but the difficult things had resolved themselves and was life was great and all was well. I was very tired from working too many hours, but was nearly at my holiday so knew I’d rest then when I came home late one evening and felt very strange and weak and just collapsed. It looked like stroke again to my family and paramedics but again wasn’t. This time it was was different though because I also had muscle spasm dystonia and kept almost losing consciousness. Everyone was far away and I felt like I couldn’t reach anyone. My oxygen levels and blood pressure kept going very low and I felt like I couldn’t breathe. I remember the paramedics were worried. It was frightening and apart from knowing I was tired, it came out of the blue.

In the hospital I recovered some function so no checks other than reflexes were made because my husband told them a similar thing had happened before (but not the spasms or low blood pressure and oxygen) and it was thought to be migraine. Because I’d had scans of my ear/brain years before, I was discharged and sent to my GP who said it was ‘neurological symptoms caused by chronic stress’. A few months later, the neurologist she referred me to read some of my notes, scratched the bottom of my soles, did some limb moving, made me walk a straight line I couldn’t because of the vertigo and then told me it was good news, I didn’t have MS, I had FND. He gave me a website to read at home, he didn’t tell me what it was as said I could read at home and he didn’t need to see me again as it was functional with no degeneration so I was lucky. I asked if it was migraine with vestibular symptoms and he laughed and said that no migraine lasts 6-8 weeks each time. I felt a fool. Yes, I had ordinary migraine he agreed (I do), but not these other kinds of migraine and all that I had experienced and been told was migraine was actually FND.

My balance/ear pain and left side head pain/pressure comes and goes. When it starts I know trouble is coming. It took me 5 months to be able to walk well and safely without help, find the words I needed, remember words, especially nouns and things and be to able to organise complex procedures like cooking a 2 course dinner for 6. I have had no treatments and feel utterly left alone with a snap diagnosis that does make a bit of sense but maybe isn’t right.

I think the menopause isn’t helping but I do find diet, exercise when I can and learning to meditate have helped me as has seeing a counsellor privately to talk about how frustrated and lonely this feels. I don’t have any major past traumas, just a few minor things but nothing I can see caused this. I have had a range of blood tests from GP for Lymes, vitamin deficiency etc at the time all negative except slight anaemia again. A recall blood test at Christmas showed blood sugar high enough to be type 2 but GP is puzzled as I have no family history and no lifestyle factors. I think I’ve had blood sugar problems for years which is why I’ve had chronic thrush and gave up all refined sugars and have a low carb diet already.

I’m sorry to go on, I just wondered if, like you, it has something to do with the vestibular system and if it all began there.

I hope you recover soon and for a long time or preferably forever! The not knowing when and where one will be when the next attack comes is pretty depressing but I’m trying, as it sounds like you are, to keep positive and proactive and not give up. Vertigo like so many other symptoms people suffer with on this forum, is so debilitating.

I wish you well,

Orchard 18

Daesin
Daesin in reply to Orchard18

Wow, you have been through the ringer. My heart goes to you.

Yes, vertigo sucks! I still have spins but not as often or as strong...thank goodness.

I have met so many "specialists" and then sub specialists. I never knew there were opthoneurologists....or a neuroimmunologist. Rheumatologists hemotologists, Ortho, ENT, neuro ENT. I'm so tired and am sick of being poked and seeing head shrugs and hearing I don't know.

Hidden
Hidden in reply to Daesin

The problem both of you appear to be having is that your doctors don’t acknowledge how little is actually known about the brain, balance, neuro vestibular system and the role of the peripheral and autonomic nervous systems play in all this.

So they fall back on projecting psychobabble rather than admit how little they actually know.

I read your comments and feel so desperately sad for you both. Somehow the Galileo quote comes immediately to mind: “All truths are easy to understand once they are discovered; the point is to discover them.”

The point is to both resist accepting the F word with all your might and mane because it lets bad doctors off the hook. It is lazy science, neglectful medicine. It is negligence.

There will be physiological explanations for these scary vestibular symptoms be assured. The point is to discover them.

But this can’t happen if you are both being sent home from hospital only to be told to manage these awful symptoms yourselves if and when they arise - just because these doctors only know what it isn’t, not what it is.

Xx

PS perhaps being labelled with the F word is the 21st century’s equivalent of what happened to Galileo Galilei centuries ago:

“The great scientist, often described as the father of modern science, was charged with heresy, tried in a church court, and eventually silenced and detained under house arrest.”

Orchard18
Orchard18 in reply to Hidden

Thanks for your message and kind thoughts.

In my heart I really believe my symptoms have a physiological cause, not because I don’t want to have a psychological disorder, but because I just feel it. I know something isn’t right. It may even be two things going on or one causing another.

I once saw a rheumatologist who told me that something was definitely not right but he couldn’t name it and didn’t know what it was. He was very kind and said he hoped one day they’d have a name and treatment for me. He felt it was likely to be an autoimmune disorder of some kind. He even called me at home a few weeks after I’d seen him to ask if I was ok and if there was any improvement or deterioration. I’m fine with professionals saying they don’t know. It’s better than being fed misinformation as you say.

I am just about to try full time work again after a six week phased return following months off but I’m really not sure if I can do it. It’s so sad as I absolutely love my work and am also the family breadwinner with people depending on me. I’m going to give it my best shot.

I hope you stay as well as possible.

Orchard 18

Orchard18
Orchard18 in reply to Daesin

Yes, I can hear just how frustrating it is for you. Not knowing means we don’t know what actions to take. Everything we try to do to help ourselves is a shot in the dark - trial and error.

I like to think we will get there!

Take care

Orchard 18