I am currently going through some education classes on motor control, which was a part of a recommendation following a well-being session with my son, as always I am sitting there taking screenshots and making notes to refer back to. These were a couple of key takeaways, that were so clearly put:
" The simple thought of fear has a massive impact on motor control. You stiffen up, you start to take smaller steps and it can effect your balance". #
"With FND it can feel like we have lost our autonomy. It can feel like we don't have control over our environment, or our symptoms or our body and it could feel scary".
# add to this the fact that we are more likely to pay additional attention to our legs/feet and this could increase our symptoms, which could make things worse.
Fear is a natural response and it has its place, especially as it gets our body ready for the "flight or fright" stage in the presence of danger.
So how can we eliminate fear in FND? What have you tried that is successful and can share with others?
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Lady4
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I'm a psychotherapist and my 10 Yr old son has FND which started 1 year ago and is now almost gone, but the vulnerability is clearly still there. FND is mind, brain plus body. Nothing illustrates the mind-body connection better than FND, and also, as a result, nothing is more the victim of the way Western medicine is organised than FND. You're quite right there about fear. FND is the stress response system gone into overdrive and this has many effects. So if you work via the body it really helps to reset that system.
An absolutely life saving resource for my son was "Reset and Rewire: The FND Workbook for Kids and Teens". It should say "for everybody", as neurologist Jon Stone does say in his review on the back. The book tells you exactly HOW to reset this stress system that has gone wrong. It's £14 but worth its weight in gold!
Another one (aimed at professionals but very well written and available free as an ebook as well as hard copy) is "Functional Somatic Symptoms in Children and Adolescents: A stress System Approach".
The point is you have to reach FND via the body - "relaxation" is not just "doing nothing" or "pacing". It's doing proactive things that reset your nervous system and work on the vagus nerve, amygdala and so on, like progressive muscle relaxation, specific breathing approaches and even cold showers! The nerves all feed into thr brain anyway as part of a big complex system so work on those bits you can access.
If specific traumas are involved, work on those too, e.g. with EMDR, again that is one that respects body and brain as well as mind. Mind alone is not the way for good psychotherapy, especially trauma issues, which can be made worse if not handled carefully.
Be aware that dissociation can make us unaware sometimes and resistant to some approaches. Again a trauma-informed approach should have awareness of dissociation but its a tricky beast! Best of luck.
Thanks, so glad that your soon is nearly fully recovered. My son goes into periods of remission and when we were away in Japan he was racing with his cousin, yet fast forward a few weeks and crawling to get to the bathroom (in fear of falling first thing) due to new symptom which his body was trying to regulate which in turn caused all over weakness (he describes as two different symptoms but they are clear connected and then throw in a virus and he becomes weaker, as body now needs to work harder).
Funny enough I have that workbook, which I vaguely recall giving to him at some point and came across it in my folder the other day. I remember looking at the recommended referral path and thought, if only. Thanks for the other recommendation. One of my favourite books is " How emotions are made" which he hasn't read and now I have bought him an "Interoception" one written by therapists based on experience. I am hoping that he will read (as identifying internal signals I think in his case, will help him on the road to recovery and help him identify/try and regulate for any triggers/stressful situations/environments).
It explains neuroception (our autonomous "flight or fright"response), which some people get stuck in, and its that unconscious level of anxiety that I want him try and tap in it. Although, as you would imagine he says not stressed/anxious etc, but clearly his mind is, which increases all the neural activity and a whole array of symptoms occur. Ultimately, the brain is just protecting its host.
We have just had a emotional and sensory assessments done, which highlights the areas which I indentified (through education) but will help others understand his needs/adjustments, moving forward into adulthood/new environments, as its clear that he is on the ASD spectrum, which many professionals have commented on. This does seem to be a common pre-disposing factor.
Wow, it sounds like you really get this. I'm pleased because knowledge is power. I don't think FND is explained at all well (or at all!) to us parents. May I ask how old is your son. Mine is 10. The business about interoception is also key I agree, and like dissociation is a thing that the importance of is often neglected. Dissociation and poor interoception are cases of things you don't realise you have because they block awareness. So I am reading a lot about interoception atm. If I ask my son "where do you feel that in your body?" this good-natured little boy gets really really irritated, which has got to be a clue, I think! I don't think my son has autism, but I agree that's a risk factor, but he is emotionally intense and very intellectual, and I think there's some connection there.If you look at that book together, I suggest you do some of the exercises together. Like body scan meditation or progressive muscle relaxation - you can lie on the sofa and listen to someone do it on YouTube. It's actually very pleasant and I'd say PMR was a game changer. We just do a 5 min one most days together and he then does it off his own back at other points because he recognises the benefits. I think that book has helped him recognise his bodily states a lot better.
Thanks I have been educating myself for a long time and am fortunate to be part of the paid Re-Active Community too. I have endless education to catch up and a couple of their interviews, and like the founder says its the people that come to them and undertake their programs that they learn the most from.
I am waiting for my son to absorb the information/watch the classes. as he is highly intelligent, but his goal is to get good results in his mocks (so this shows his home study is working and he can continue on his reduced timetables) which was working last term, so I have to be careful not to overload. Interoception and Proprioception are key areas, hence sensory input helps.
I think the book I have will help you as a therapist, as its geared that way. I was directed by his OT to different sites/programs but I chose this book because he isn't a child. Diagnosed Summer 22/winter 22 (although originally had Osgood Schlatters disease dx Sept 20, collapsed a lot and in pain (low pain threshold, CRPS was diagnosed first, then Nov 22 got to find out he had FND, although on reflection I didn't really pick that up as referwnced to Neurosymptoms.org - not once but twice). It was a stressful time and on the sevond dx, handed a paper fro GP, went home, read practically the whole website from recollection and broke down "alone".
Thats sounds a bit like restorative yoga, those deep relaxation poses, esp like the one that opens your chest.
He has tried re-centering, which I need to make more time for.
Grounding techniques might be good and external focus and sensory can help if you want to distract his attention to any symptoms to say walk.
My son had "drop attacks" which are a type of seizure, many times I would hear him downstairs (often when he was about to get dressed for school - a clear trigger) and I would find him spark out with a head injury etc (learn't not to panic after several trips to A&E). The dissociation/trance like ones are hard to tap into for the individual but thats where you come in/or another adult (sometimes you can see them with the glazed over look) and recognising the body sensations plays a key because for example, if he describes his heart racing, you can sit quietly together and do breathing exercises or if he says he is suddenly feeling hot (maybe a symptom of being overwhelmed) you can just grab a cooling towel.
There is a great graphic novel called "not there" for kids and adolesvents and real useful resource to explaining these type of seizures to others and good advice for schools. Time away from triggering environment might be required with some sensory aids, a cosy or weighted blanket comes to mind in a cosy corner.
The book is called "Interoception and Regulation" Teaching Skills of Body Awareness and Supporting Connection with Others by Emma Goodall and Charlotte Brownlow.
Thank you! I will look into all those many things you reference. Yes, we have so much to learn from each other. I'm going to add FND to my practice when I've put it all together and aim to put a lot on my website. Somehow I think the answers are out there amongst us and we need to get them quickly to people before difficult to change patterns get more entrenched. I agree it's very hard to fit among all the other things Iin life. I'm quite glad my son was young enough we could just pause and focus on that.
Absolutely, we need to change the brains predictions by reinforcing positive actions (its not just CBT) you need to show the brain too.
After a while the brain can come a bit lazy and not correct predictions based on actual sensory inputs. Its believed this happens with stress, depression and pain because you can get stuck in this predictive loop.
Are you UK based and have you been practising long?
Yes, we need to think of brain and mind as distinct things. And experiential rather than just telling. Are you saying something there about predictive processes that start to go wrong? Interoception and it's impact on that is interesting but v much on the edge of my understanding atm! I'm wondering about things like tai chi and qigong as potentially helpful as well as yoga of course. Something about connecting to the inner flow of feelings, energy or whatever you want to call it; interoception. 'Felt sense' in the language of experiential person-centred therapy. Are these all sort of the same thing, but different terms .. ? Different traditions same story? 'Many paths to Rome'?!
Yes I'm UK (West Yorkshire). I only finished my training during my son's illness so I am actually only just starting up in my own practice soon.
When you set up your practice, which of course will want to welcome patients with FND, might I make a plea for the potential FND patients who have hypersensitivity as a symptom, and which when aroused can trigger shaking or even shouting ? I have had difficulty in accessing some private health care (even dismissed!) purely as a result of the practitioner not being able to provide an environment that is firstly quiet, and secondly one where they can control the room temperature. Ensuring seating that allows the patient to put their feet firmly on the floor is also important ..it increases control and reduces the shaking. As treatment for FND is regrettably very thin on the ground, I am sure you should do well with your practice with a bias in this direction. ... in fact I can recall someone on this site from West Yorks ... but sadly I am a bit too far away. All the best for your future practice, and am glad your son is so much better.
Hi there, thank you for bringing this to my attention. There are so many symptoms and so many potential triggers, arent there. I'm curious about whether your hypersensitivity comes on in the context of general overwhelm (overflowing "stress bucket" sort of concept), or do you have a strong startle reflex that sets off these symptoms? Or anything else you see as a pattern?
My hypersensitivity is set off by noise, esp electronically generated noise ( oh that ........ mobile!) .. human noise is fine, and also by heat, even a normal temperature of 20 say, if in an enclosed space. The other significant trigger to shaking that often ends with a noisy burst of air being expelled from my chest, is exercise, or even some yoga postures ..such as the hardly energy consuming child's pose or deep breathing. Gravity is also a factor, as facial spasms/stuttering happen often when I change from lying to standing, or standing to sitting. I am currently thinking that the shaking is also related to physical R/L body imbalance and backed by the opinion of my acupuncturist. All this points to the need for a proper physical and mental assessment of FND patients in a joined up manner, which just is not happening. There is a chasm between what could be done and what is being done. We look to the next generation to get this sorted out! I think the wisdom in the e-book is a good start, and an excellent DIY manual to help patients with the vacuum.
Thanks for those links which are new to me and I have signed and shared the petition and am keen to do that course ASAP. I'm intrigued by your triggers which are quite specific aren't they. My son developed a very strong startle reflex with his FND. It would set off his symptoms, so I looked at treating the startle reflex specifically and his symptoms did seem to reduce in concert with that (and usually are close to 0% of what was really pretty extreme back in the day). I was told by an RMTi therapist that every time he startled, there'd be a spike of cortisol rush through his body that would last 5 days. She prescribed exercises to 'reintegrate'this reflex. He was showing improvements after a few days and it's more or less gone now after a few months of these exercises, which he is supposed to continue with, but I cannot be 100% sure whether it was that or progressive muscle relaxation (which he'd been doing for a few weeks) or cross crawl, which he'd been doing for a week or two which helped. Certainly the reflex and dome symptoms seemed to come back again for a bit recently when we got lazy about the daily PMR and cross crawl.
Cross crawl is my idea for "worth a try" based on stuff I've read about improving left-right brain integration. It can't do any harm so might be worth a try if you suspect you have L/R imbalances. You can literally just sit there and tap left to right across your body, or you can do it while marching.
All the above exercises literally only add up to a few minutes a day BTW.
That is both good and bad news really. Bad, as I get so many startles in a day, I must have a high level of cortisol ..and if each lasts 5 days ..Oh no! Good, if I try the tapping on my chest to help with the L/R brain integration,,,,, a brief try yielded chest shaking and noises ,sometimes with lip smacking and toe twitching .. is that to be expected ?.. my body is really hypersens -itive!! How often and for how long would you recommend given that that is the case? This hypersensitivity has got worse over the 3 years of FND. Do you think the resultant shaking is a release mech -anism to be encouraged or something less welcome?
I did know about the L/R brain integration from being an SEN teacher and have been using 'figure of eight' movements and doing some rope flowing (also 8 based), see heromovement.net/blog/rope-... This, together with backward walking is also favoured by Lawrence van Lingen, who primarily trains olympic runners, but incorporates work on the nervous system too. Flow roping w'd be fun for a child. It is said to also induce a 'flow state' , which according to some is used in the treatment of PTSD (haven't been there!) I sometimes do cross crawl Pilates movements, but will try and be more consistent from now on.
It's good to hear these body based ideas have worked for your son which is an encouraging sign to spur me on. The meagre input from the NHS has not helped at all .sad. Thanks for bumping up the names on the petition.
I like the sound of the Flow Roping! I don't have the answers I'm afraid, but I hope these conversations move things along somehow. They certainly are doing that for me (although my head is spinning now lol!). If even the gentle tapping sets off symptoms maybe just do the bare minimum but there is also a thing called butterfly hug that they use in EMDR, you might know it. I also wonder about bilateral stimulation through music (on headphones, lots of options online). This is all speculation for me, I don't claim to know but some things seem safe enough to try slowly and gentlyand see if they help. I remember my son did some of that music for maybe 20 mins and he didn't half seem spaced out afterwards! So I've learned to be very cautious! I think challenges to the brain can be quite powerful and I've been told "slow is faster". I think seizures, shaking etc are all about the nervous system letting off steam, so to speak. Or re-regulating itself. I think Jon Stone says that somewhere. It's like the bucket gets full from too much going into it over time and then it overflows all of a sudden. A startle is going to add that extra bit that makes the bucket overflow but if you can find ways to empty the bucket at other times, the shaking should be less likely to occur because the bucket doesnt fill up so much. Breathing exercises would be an obvious one, but you can't do that, but various things are recommended in that FND workbook: body scan meditation, massage, weighted blanket, aromatherapy, guided imagery... and we've found the progressive muscle relaxation really good especially.
Is the acupuncture helpful and have you asked about the startle? Because I've very rarely heard startling referred to in the FND literature but anecdotally a few people with FND have told me they have it and I think it can be quite key. It's a known symptom of PTSD however and of course there's going to be a lot of overlap.
There is also the idea of opposite actions - can you try and move the body in a different way when the movement happens? Aaron Fobian reports amazing results with teens with dissociative seizures (which may be what.the tremors are) with this technique. If you have spotify there is a great interview with her about that. My son had some little seizures, usually right at the end of the day in bed, when the bucket was full, and as he learnt from the book to anticipate them he then went on to be able to stay present enough to do the opposite actions, and he's barely had one since.
My son's startle came from lights going out and also when he was concentrating on something which had the effect that he literally could not hear so he would get a shock when someone came up. He would then faint usually. He was fainting over 20 X per day for ages, I gave up counting at that point! There just didn't seem to be a way to stop the startles until he did the RMTi therapy, so that is something to look up but it's not cheap. But the idea of a reflex either not having integrated or dis-integrating due to a trauma (a mild concussion on a background of school stress in this case) is interesting and then it feeding all the other symptoms because of the shock it sends through the body. I think the body then gets stuck in hyperaousal aka fight, flight, freeze, although it's more complicated as I think there is then a dynamic that can include flipping into hypoarousal which is collapse (ie faint or drop). Nervous system dysregulation of some sort anyway.
I'll send a link after this. I also wondered about if you know a reason for those triggers you have, whether you could address those. Like with my son I wondered if the lights going out was a body memory of the fall and briefly losing consciousness. Thee are ways of processing particular traumas if you know what they are, EMDR being perhaps the most obvuous and available. Potentially if you have a theory you might be able to push for a treatment but I know that's optimistic the shocking way things are.
Thank you for the information ,....the interchange has been very fruitful for everyone. No-one has all the answers with FND, even the professionals, who probably have less time to look at what is out there, than the amateurs on here with no medical training but high motivation. I am not going to give up trying different things, and will follow up the leads above. I feel more confident now, following your opinion that the shaking is to be encouraged and I know exactly how to induce it, , so hopefully it will eventually fizzle out if I do the PMR on a regular basis, (have found a spiel for it on Youtube), carry on with the rope flowing, which can be done outdoors in the park soon and also the yoga.....good job I like exercise, though can't go the the Leisure Centre because of my 'behaviour' .. I am the SEN student now!
I have done my best to deal with some vague potential causes that may have caused anxiety and upset my nervous system, but the main trigger I think was an emergency operation to remove a dental cyst that caused an infection impinging on the wind pipe, and which saw me in the ICU for 3 days on a ventilator, after which I was told I had been given too much anaesthetic. When I came home, it was lockdown time in 2020 ..and my poor IT skills made life difficult, so that filled the bucket up some more...the initial shaking/writhing was gentle and limited to the legs, but is now more severe and body wide. I am much better than I was in the beginning from an anxiety point of view and know I can cope/live with the FND as it now is, and have adjusted to 'life on a cabbage patch' ..but w'd love to go beyond ,, and the prospects are improving YAY...so thanks again for your help.
Wow, you've been through what would definitely be experienced as trauma there by most measures.I wouldn't necessarily say encourage the shaking. But do encourage the relaxation, then hopefully there'll be less shaking going forward. Aaron Fobian's technique is to stop the shaking etc but I do think that if the nervous system needs to shake it needs to put that energy (or whatever it is) somewhere, so I ask the question of where does it go. At some point I'll really look into her work in more detail. It'll be so good if we stay in touch and keep sharing what works and what doesn't too of course. Like you say I think this kind of crowd work will move the field forward so much faster than the medics can move it. It's also in the up close and personal that a lot of the clues lie, that help us then step back and see the patterns. Then hopefully we can feed those back to the medics.
Good morning, I was thinking about what you startle in reaction to and it struck me they are the sort of experiences you would have had in hospital. You've probably already realised this! That interminable beeping for example! The obvious solution to my mind would be some EMDR. You could maybe ask specifically for that on the NHS and you might get it, I don't know, but there are more people around now who do it privately and if you can,I I do think it would be worth the investment. There are tricks around to get similar processing as EMDR without it. I don't know how to private message on here but we could arrange a WhatsApp video chat if you like about this. I don't want to put it on here as depending on the degree of trauma it is not necessarily safe to just DIY these things. But essentially it's about left/right processing and integration. Just generally maximising L/R habits has an intrinsic benefit to wellbeing, I believe, but I would not want to stand up in court and say that because it's on the edge of our understanding. But bear in mind that Francine Shapiro who developed EMDR noticed that a walk in the woods made her feel better. She set about trying to figure out why ... and came up with EMDR. So everyday life can be a pretty cool therapy if we use it right!
I also thought you might like to listen to this series from Radio 4 by dear old Michael Mosley, God rest his soul.
I like the way he refers to the 'relaxation system', acknowledging it as a real thing (not just a 'not doing anything' sort of thing as I used to think of it before I woke up!), like a muscle you can exercise.
It's very nice listening that gives some nice context.
"a mild concussion on a background of school stress in this case" - I am guessing the school stress is what he was deep in thought when the lights were turned off and that he was in a high state of arousal. I hope he wasn't bullied by others, some children can be so cruel (although some not even emotionally intelligent enough to realise the suffering they have caused.
Actually the school stress was mainly caused by the teacher. He'd been very happy at school previously but the year 4 teacher would shout at the whole class and very occasionally shame individual children like my son and then he felt he also wasn't getting any validation for his efforts. He has perfectionist tendencies which were part of the problem and there was also the ridiculous daily competitive frenzy around Times Tables Rockstars. I had just taken the bold step of banning it. Lots of parents were upset about all these things, it turns out. He fell on his face playing tig at school. The symptoms came on a month later though with more stressful school situations and then a pattern emerged where he couldn't go back to school without his symptoms getting worse. He did become very avoidant of children. He's got over that though now and is happy there again.
I vaguely recall my son mentioning something a teacher said but it didn't resonate with him and it was a passing comment. FND pretty sure his associated with losses although that doesn't explain why school is a trigger, other than he doesn't feel the input adds value and quite happy to study independently.
I am glad your son is back at school and happy and you worked out a remedy.
I would imagine school is tiring at the very least and full of sensory inputs, so it's a big thing when you have this vulnerability. High school/college is so much more pressure than primary. It's good your son is motivated and managing to work independently. Having control is important too I think someone told me. Certainly it is in anything linked to trauma.
I have noticed that in adverts for teaching assistants, there is now a 'sort' called ELSA ..emotional literacy support assistant .. who deals with the like of anxiety, the effects of bullying, and pupils who have difficulty with relationships ..it sounds like a good idea, but the cynic in me asks how well are they trained, and is it a measure to reduce referrals to CAMS, which has a long waiting list ?
If your teenage son feels the input of the material at school doesn't improve his learning, it could be more down to the methods of the input, especially if the teacher is trying to practice skills such as discussion , group work , role play, which require social willing, that he may find hard and worry him... just a suggestion , as you say you are finding it difficult to pinpoint what the stress element of school is. .. you know your son, not me!
Thanks, he would only reach out to them if he was having an issue with a particular topic within a subject and isn't really interested in them marking past exams, I started to do it, I can't force him to do it as it will surely end up in a stressful encounter.
I've just started qigong classes and it definitely seems to be helpful. My personal opinion is that there is too much emphasis on fear - I suffered 2 years of pretty aggressive gas lighting by a neuropsychiatrist who told me he was convinced my problem was all about fear and would drill me constantly about what I was afraid of, with no result. I told him I found massage therapy useful for my hypersensitivity and he said "that's no good - you may as well give me the money"! I think FND CAN be fear-based, but not always. There is probably a myriad of other reasons why the brain goes wonky like this. The emphasis should be on figuring out why things went wrong and then using the appropriate therapy to mitigate it. Not a direct jump to "oh, you must be afraid/traumatized/looking for primary and secondary gains".
I should just add that the way you are treated once diagnosed with FND can definitely impact your mental health. After being repeatedly physically/mentally abused, starved, shouted and sworn at in the ER and various doctors' offices for years, I was finally diagnosed with medically-induced PTSD by that same neuropsych. So now I have agarophobia, especially around hospitals, and I don't trust people, especially "professionals". My FND, however, is no worse.
That's terrible about the way you've been treated. You wouldn't believe the number of clients I've had who've just felt utterly broken by the health system and gas lighting is a good word to sum much of it up. None of them had FND or were there for purely health reasons but thr system is a significant stressor on so many people and particularly cruel with FND where the situation is confusing enough as it is.I'm fascinated by your experience with qigong. I had never even heard of it before I read The Body Keeps the Score a few years ago. Good luck with that and I hope it continues to deliver and come back and tell us about it please! It's great we are starting to make sense of why these body-based approaches that have been around for thousands of years are helpful. Have you seen Lee Holden on YouTube. He explains things very well and one of the funny things he said was that Chinese doctors used to be paid to keep their patients well. If you got ill, you'd stop paying them! This is kind of how qigong developed - to keep people well and stop them getting ill.
The thing about fear ... noone should ever tell patients/clients what they feel! It's so arrogant and pointless at best. But clearly the subconscious body can have a completely different experience to our subjective experience. Maybe that's what he's getting at but your subjective experience is your reality and any physiological aspects in that sense can't really be labelled 'fear' unless you experience them as such. I'm guessing the qigong is speaking the language of your body and feeding into a good subjective experience for you.
Oh thats disgraceful, I can understand your fear of hospitals and certain medical professionals but open spaces too. Being in nature is supposed to have a therapeutic effect, I hope you van overcome this.
I think as fear is a human collective concept, one person's perspective of fear is different to anothers, and maybe using less strong language like "worried about" would be better. Certainly better than traumatised (as this is a very strong and clearly triggering word.
Like "pain" if we downgraded it to unpleasant feeling would it feel better? If we didn't give it attentional focus, would that help?
Should we not ask someone how they are feeling, not are you in pain (I made the mistake of asking on a level of 1 - 10 how painful is it, reply 20 - unknowing to myself at the time, I was bringing attentional focus to the leg spasms which was causing an unpleasant feeling).
I can't get full access but one of the paragraphs says:
If subjects are taught to emotionally distance themselves from the negative affective impact of pain, the resulting ... #
# Will update, trying to get full access.
Here are a couple of extracts from my favourite read:
"Pain is an experience that occurs not only from physical damage but also when your brain predicts pain is imminent".
If nociception* works by prediction, as does every other sensory system in the brain, then you construct instances of pain out of more basic parts using your concept of "Pain".
"When you are expecting pain, like the moment just before an injection, your brain regions that process nociception change their activity. That is, you simulate pain and therefore feel it".
* Nociception is the neural process of encoding and processing noxious stimuli, which are potential harm signals, detected by specialized sensory receptors called nociceptors.
Brain regions participate in prediction loops with other regions.
It predicts, stimulates, compares and then resolves errors - think I wrote a post on this.
"Your brain is always predicting, and its most important mission is predicting your body's energy needs, so you can stay alive and well."
A person centred approach is best. I joined a Psychology special with one of Re-Active's team members a while ago.
Whilst we are all trying to eliminate Stigma /avoid medical harm, the first step starts with Validation on your first appointment, which years ago never happened (as you will hear from members here) and for FND a positive "rule in" diagnosis.
So all medical professionals must validate. I hear you, how can I help you, let the sufferer lead the narrative and ask them what their goals are (goals that makes them happy, like dancing/or meeting up with friends that they had isolated themselves from), as this is often a driving force to changing behaviours and hopefully recovery. Try and get them to re-think some of their worries. It was called regulating the nervous symptom with thought. Ie, help them work through changing their negative thoughts (but I guess you are well trained in that).
Yes, hats off to the great Carl Rogers! That person-centred approach is now extended and validated by the ideas from modern attachment theory and Neuroscience and polyvagal theory that we co-regulate each others' nervous systems by attuned presence involving right brain to right brain communication via body language, eye contact, prosody and so on more than with words.I'm very interested that Stephen Porges of polyvagal theory is developing a sound-based system specifically with FND in mind. So far his sound based system for trauma (the SSP) is for a different part of the autonomic nervous system: the social engagement system. It literally uses the frequencies of empathic attunement of a gentle voice but in music. The new one is I think for the dorsal vagus. I think but don't quote me that the symptoms in FND trigger dorsal vagus shutdown and that's what leads to fainting. I need to revisit this. My son would faint more than 20 x per day so at the time I was really very keen to make sense of this!
Hi, well we called them faints but I don't really know if they should have been called drop attacks. He just crumpled and was out for a few seconds probably, not ages, and there was a sense that he was less likely to faint in an unsafe place. Which I think I've heard is a thing. Like there was a bit of awareness/ self-preservation left. He also had seizures but not as often. Although daily for quite a long while.
I would describe the ones that my son had as someone had just swipped his legs from beneath him with no notice and he was out a minute or three. Apparently because it happens so fast you are less likely to have a serious injury, as you haven't time/awareness to break the fall.
My son was knocked out several times more so because of what he landed on. I actually moved furniture around as the first time he hit his head on the metal bar of his computer desk (then it was the legs or wheels of computer chair). Several A&E visits initially.
So what changed for him, can you describe the turnaround point?
I'm sorry he got hurt so often. I think it was easier to deal with with a 9 year old who was obviously smaller and was at home when the things were going on so we could control the environment. I let him do all sorts during this phase but always stayed close to catch him. We were swimming in the sea even. Which was scary tbh but I was trying to build positive experiences and pacing into his life.The turning points ... OT said pacing (OT was literally an email, that's all), but that only went so far. He was getting better, doing more activities (he was absolutely exhausted when it started- initial symptoms included not able to walk for a month, massive what I now see as dissociation (memory issues, confusion, dazed, personality/mood switches, hallucinations) sensory distortions, fear, avoidance, terror of children etc.) and I was trying to grow his social world; he was doing really well but suddenly he snapped and went backwards for a couple of weeks especially with regard to these dissociative symptoms. He went totally weird omg! This was about 5 months in (it all started end of Feb 2024). I think we'd been doing too much and his bucket overflowed big time.
The game changer that arrived then was that FND workbook for kids and teens. That has the bucket metaphor in it and we were both like "yes!, that's it!". The 'reset protocol' to reset the nervous system to a calm place then the following parts of it to 'rewire'. The body map to anticipate symptoms. We haven't done the whole book. What I think sustains him now is progressive muscle relaxation and generally any relaxation strategies that target the autonomic nervous system. Sometimes I do reflexology on him based on a children's book that shows you what to do, and I noticed that whereas he always did sleep solidly through the night, after reflexology his breathing is so deep and restful. The author told me that's him achieving homeostasis.
We also do cross crawl most days. I'm always looking for things that challenge the brain to connect more. It's a bit exploratory but always gentle.
We had a break from these recently and his symptoms bubbled back up (only a bit but it was a warning to keep going). Also a strong startle reflex was feeding his symptoms and I took him to an RMTi / neurodevelopmental therapist and she gave us some exercises. His startle began to go away within days. At that point we'd been doing the PMR for a few weeks and the cross crawl for a week or 2. So I thought it was that, but we were still doing those exercises when he went backwards a bit recently when we stopped the others. The idea there is that primitive reflexes like the Moro aka startle reflex are either not integrated within the first year of life (common in autism) or become dis-integrated due to a trauma later (he had a mild concussion). They underpin other problems if not integrated.
The neurodevelopmental therapist also showed us an amazing technique called head hold. Can't see it mentioned anywhere else. When startled or generally if stressed as it is v v calming ... cup forehead in one hand and base of back of head in the other. Hold. My kids just love this and go all blissful when i do it. I was forgetting to do it much at first as it wasn't part of the main exercise programme but then one day not long ago he literally suddenly switched into a dissociative state that was like another person (very DID style). Luckily we were on the way to see the DT. She said do the head hold ...and literally there and then he switched back into himself. I felt like Jesus lol. She tells me it connects back brain to prefrontal cortex to bring the brain back online. It really was miraculous!
I see you are seeing Jon Stone tonight. Fab! I wonder if anyone is talking about dissociation as the key process in all of FND? There is a fab lady called Linda Pereira who is pushing this idea on some chats. Not sure if you've seen her anyhere. She says she actually had DID and treating it with a modified form of EMDR got rid of all the FND. There is a model of Structural Dissociation that has dissociation on a spectrum that has PTSD, cPTSD, borderline personality disorder, other dissociative disorders and DID along it, so I'm not thinking everyone with FND has DID (which is at the friend of the spectrum), but for what it's worth I think she's onto something and I came to that conclusion myself by putting together all I know from many different angles especially trauma-informed psychotherapies and somatic ones (eg Peter Levine). Losing limb function can be seen as an extreme dissociative event where even the body is cut off. But I don't think medics really get this somehow. Even in psychotherapy the importance of dissociation is often missed (in many many other mental health issues). You've read The Body Keeps the Score so I think you'll know what I mean. If there's an opportunity to bring dissociation up with Jon Stone it would be an interesting discussion I believe!
Our OT experience wasn't great three knock backs, an last minute visit arranged when we were away and because he wasn't experienced motor issues when they called to re-arrange put on a self referral if symptoms re-appear. As I began to learn I realised that sensory and emotional difficulties were at play and he was probably on the ASD spectrum. Could get these assessments done on the NHS, as OT he needed to be diagnosed from birth and had to pay privately.
Did he actually have hallucinations, my son did with upside vision, which caused dizziness and loss of balance when flipped back (but it was several times a day).
My friend does spiritual healing and reflexology but only treats adults, despite promising to help a few times (sore subject, but we all all good). She did reflexology on us and could help pinpoint any pain/injury maybe that would help teens/adults with poor interoception, giving them an indication where the unpleasant affect/feelings are. Just a thought . .
Have you a reference to the book you used.
I only mentioned earlier that whilst still weak he should do yoga. When he has energy he likes to do push ups and press ups and whilst increasing proprioception by weighted activities are mentioned, it needs to be graded.
Whats a RMTi therapist, I have asked for neuro PT referral to show us how we can incorporate the Body Braid into his daily routine and to give us guidance for an effective exercise program. Its like a gentle hug and as his arousal levels were deamed high, I think it will help. Often find him cocooned in a soft blanket.
Interest about the link to Autism and the startle reflex and concussion. Do you have a link/article you can share?
Wow that "Head Hold" technique sounds amazing, I will research. I can see how it would help someone before they dissociated but wondered if it would help bring out of seizures.
Not everyone has seizures and not all are the same type (think 4 types from recollection). All symptoms seem specific to an individual but if it gets mentioned in the FND Societies Q&A sessioj with him later, I will be sure to feed back (not sure if registration window is still open).
brainbodyboost.co.uk/ this is the neurodevelopmental therapist we saw. I originally was contacting her about the Safe and Sound Protocol as it thought it might help, but she recommended the exercises.
Thanks will check it out. I was trying to find information about the "Head Hold" and I guess it is just for carer to try as from what I can read during seizures "don't touch" unless in danger of injury, seems to be the recurring theme.
So guessing its just if you can get them out of the dissociative trance and back to reality before a seizure.
But if massage and physical touch us good for proprioception, maybe that technique is too.
Yes, I see what you mean. She originally said to use after a startle to calm him in the gap before fainting. By then he wasn't fainting so often though. I never tried it during a seizure or even fainting actually. It was just during this strange dissociative kind of DID-like switch that I saw the amazing effect, but the kids tell me it feels heavenly and i see them go all "ah bliss!"! I want someone to do it to me lol. I'm not sure if it's the same if a complete stranger does it!Speaking of DID, these sort of experiences hint a lot about what's going on under the bonnet and the strange but real underlying common causes. I think anyway. Most of the time he is one person but sometimes, very occasionally, he switches in a way that's quite striking. We are actually all made up of parts, it's completely normal. Internal Family Systems therapy explains this beautifully. With DID it's just gone a bit extreme along the spectrum, but we all dissociate into our parts to some extent. It makes me think the effective therapies could indeed be similar.
Well, that one time it was literally mid conversation and very striking. He was sitting behind me in the car telling me about school. I started talking about ponds and tadpoles and suddenly there was this "uh!" and he said, in a much younger voice "where am I? What are we doing?" That sort of thing. Cpuldnt remember the conversation. He was OK but a bit confused and definitely seemed kind of a younger, less sure version of himself. This went on for maybe 45 mins before we did the head hold. Another time the neurodevelopmental therapist actually triggered one by doing a particular exercise on him that wobbled his neck. I think there is a body memory around that which triggered it. He has this deliberate persona of a kind of dinosaur which usually is deliberate playful acting, but sometimes I think he uses that as a defensive shield. So he was hissing and crawling about and again very regressed seeming. In the summer when he snapped from doing too much, he lost a lot of memories, became very regressed, speech and hearing on and off, looking like in flight mode a lot of the time but also on the floor a lot not walking and seemingly not able to on and off. Very odd. This went on on and off over a few days.
Re. Hallucinations- no many but a lot of visual distortions.
Re. Autism - did you always think your son was on the ASD specrltrum? Because I got a lot of "is he autistic " this last year, but never before. Symptoms of PTSD and autism overlap a lot amd I think it was that. I think PTSD and FND overlap a lot too. Presumably because of underlying nervous system dysregulation. My son is looking a lot less autistic now. But for sure he is unusual in many ways. I just don't think it's autism but it might have made him vulnerable. I speculate his way of being and possibly life events may have made him somewhat more prone to dissociation than most children.
I will look up body braid! So many ideas aren't there!
The reflexology you can learn yourself. I'm using a lovely children's book by Susan Quayle, which unfortunately I doubt a young man will be open to!! I had a lovely online session with Susan. It was a bit of a misunderstanding cos I thought she worked down the road but actually she was the other end of the country! You might be onto something there about reflexology and interoception. If I ask my son about feelings in the body he gets annoyed which I think is partly because he feels lost and confused and therefore maybe even scared with that question. But if we just find ways to get into the body without asking too many questions, maybe we have a way in there. Reiki may be another one. I used to be typical 'scientific' "oh but nothing's going on so how can it work", but when you throw interoception into the mix, well something really is going on. And people swear they feel better. So actually I wasn't being scientific, I was being closed-minded.
The last paragraph re prediction fits in with one of the more biological finds re FND, in that oxygen modulation in the brain has been found to be more erratic in FND patients. This previously posted BOLD article at sciencedirect.com/science/a... did not work out whether the modulation is the cause or the effect of the body's vacillating energy needs/behaviour though.
The book also goes on about body budgets, what our body needs and thats where a healthy diet, enough sleep and lifestyle fit, together with "feel good" inputs like laughter. It also talks about cykokines* levels and inflammation. Bear with I will add a few paras which will help make sense of it all.
Yoga also reduces pro inflammatory cykotines. People who practice yoga are able to calm down more quickly and effectively, probably due to some combination of physical activity and the slow-paced breathing.
* The cytokines tell your immune cells how to fight threats and repair injuries. Think of cytokines as chemical messengers that tell cells how to behave.
Apparently, our body budgets are regulated by predictive circuitry in our interceptive network. If those predictions become chronically out of sync with your bodies needs, its actually hard to bring them back into balance. It doesn't respond quickly to counterevidence (prediction error).
It goes on to say that a body budget is like a financial budget, it is easy to maintain when you have a solid foundation.
I suffer the same problems i have dogs wich forcesme to have too leave the house for they're wellbeing. Dont get me wrong i still struggle but the fact that they are there and rely on me to feed water and exercise them makes me have to do it . Lol like now is a perfect example im preparing to go out with dogs but thought ishoukd just check my email and before i know it its 45 mins later and im still sitting on couch preparing. When i say preparing i mean creating as good a place as possible in my mind ro allow me the strength and courage to face the outside world away from my safespace at home .
Fnd has limted my ability to control my parts of my body(wheelchair user), pain constant, deformed knee , warped spine , slipped discs, ptsd , social anxiety , insomnia blah blah blah list could go on .
Best advice is keep yourself happy ,keep the mind busy , eat well and realise that we are only on this planet a short time and we should enjoy the little things , take heed for the things we have and "do not worry about what other people think " that will fry the mind ,body and soul
Fight the pain (not every day but dont let it deatry u life) charge on though it . U know u can do it
You've such a lot going on there Dave and still got a strong spirit in you! Have you tried any body-based type of things to manage the pain or feelings? Or mind-body things, maybe mindfulness or something?
Hello. I will say the skills that I have learned during therapy have really helped. First when symptoms start to arise(fear) I asked myself, what am I thinking, what am I feeling, what am I doing? Ik this seems simple, but becoming more aware of my body and the tension helps me before I go into a full blown shut down( seizure. ) I was totally against therapy and have been my entire life. I can honestly say now that I've let my guard down and accepted help, it has made such a difference in my life. If my brain will allow me to process things in that moment, I try to focus on the facts rather than emotions. Like when I lose control and can't use my legs. I tell myself, my legs work, they aren't broken I have mobility to help. Mind over matter. I hope this helps.
Did they teach you to retrain your negative thought pattern? People often catastrophise, understandly so.
I love that you have embraced help (therapy) and it has made such a difference in your life 😀
I hear it is important for recovery (once you have a "rule in" diagnosis). Acceptance of how things are right now (not forever) and working your way through it gradually, preferably with some professional help. I was taught that if you can't control a seizure in time, accept it, like a wave going over your head, if possible get to a "safe space"/lower yourself to the ground to avoid injury.
If your brain allows you to process and you notice you are getting hot/cold/heart racing etc, having a sensory aid (a cooling towel/ice roller, just two examples) at hand/inplementing breathing technique (finger tracing/box breathing for example)/grounding technique (sensory: a cold smooth stone for example to grab/ ready in your pocket or the 5-4-3-2-1 technique) helps too.
Yes indeed. It has been a battle bc I viewed the entire world negatively my entire life. I thought that I was adapting in life but I was just going through the motions. It even got to a point I would stand close up against the door if I heard a plane bc I was afraid it would fall and crash from the sky. I've laughed my negative thoughts off for a very long time. Then, when I started therapy I began to challenge those negative thoughts. Understanding there are certain things I will never have control over good or bad, has helped as well. Honestly don't know where I would be without my faith and therapy. Everything you mentioned above, I have had to implement into my life. Being more aware has definitely helped and kept me from having aa many seizures as I use to. One of the most important things I've had to focus on is, the HEALING not the DIAGNOSIS. Easier said than done of course. You are also so right about the seizures. I have tried so many times before to try and hold it back but it only makes it worse. Like you said, it's like a rushing wave that you just have to endure in that moment.
Sounds like you have put in the hard work and its paid off.
I watched an interview earlier and think people try so hard to work out why FND happened to them and what triggered it, they get stressed and anxious and this can make the symptoms worse esp if there is more attention to the symptom. Whereas, if they can learn to accept it and learn to manage it, they can move forward quicker.
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