Dysautonomia and POTS

[Lady4]

I watched an interview with Lisa B and Julie H and made some notes and recommendations. Therapies included :

PT: Purpose of PT was to get the heart used to being uprighy. Starting the exercises laying on the floor moving her legs to slowly getting herself into upright positions (graded exercise).

OT: As her body was constantly in Sympathetic State, she was taught how to manual shift her body into rest and digest. I would think that this would include breathing exercises.

Yoga: To relax and put her body in regulating positions. I think this probably refers to Restorative Yoga.

Psychology: Rethink some of hers fears and regulate her netvous system with own thought.

Diet really important and calorie intake, as you are constantly burning calories even at rest and although she thought she was eating well, it actually turned out she was malnutritioned. Her diet now includes of 20g protein, 30g of fibre.

She also learned meditation and dors this for 20 mins daily.

So having a multi-disciplinary team working by your side could really help.

[Entwicklung]

This is useful thanks Lady4.

'Graded exercise' is the next move I want to make towards getting back to my former self.

Restorative yoga also sounds like a useful way in as well.

[Lady4 in reply to Entwicklung]

Yes, I had never heard of that until I picked it up from an interview and then I was either shared/or found a link and tried a couple of the poses, can't recall the names but found that deep relaxation and the one position really opened up the chest, area so to speak.

If I find them again, I will update my reply with links.

[Lady4 in reply to Entwicklung]

This is the link to the live video:.youtu.be/NsVqBKGY_RU?si=nTd...(Not working as expected?)

[Entwicklung in reply to Lady4]

Ah thanks very much!

[210272]

I hope they were told that POTS etc are not FNDs, as per this paper:

Front Neurol. 2024 Nov 20;15:1490744. doi: 10.3389/fneur.2024.1490744

Postural orthostatic tachycardia syndrome and other common autonomic disorders are not functional neurologic disorders

[Lady4 in reply to 210272]

Yes its a Zebra condition but can sometimes exist with FND.

[210272 in reply to Lady4]

I'm not sure what you mean regarding a Zebra condition. Usually that refers to rare or less common conditions but I don't think that would apply to POTS etc. But it does give more credence to the notion of taking FND out of DSM.

Re FND; I keep hearing that it's common but if that is the case, how come there's a paucity of data from the LGBTQ++ community and how come we're not already on season six of the FND World Summit (modelled along the lines of the Migraine World Summit)? One paper I read put the incidence at 4-12 per 100K but the Iatrogenic Harm paper has it as being much higher so I wonder if that's the result of diagnostic inflation, as happened with PPPD. They also say that 16% of referrals to neurology are for FND (second only to headache) but I'm not sure that this would be verified if we all read our referral notes. Plus there are shed loads of rare conditions (11 thousand and counting) and roughly half of them are neurological so I can imagine that a lot of referrals to neurology are not for FND at all.

Plus - and this has been bugging me for some time now - if FND is as common as they say it is, how come we're not seeing it being diagnosed on medical TV shows very often (I did see a potential case of Conversion Disorder on Gossip Girl but the story line fizzled out fairly quickly) and why are we not seeing actors with it portraying characters with it in TV shows? If they want to reduce the stigma (which may not have been reduced by Stone referring to p/w FND as 'tiresome' - twice - in his speculative 'bare essentials; functional symptoms in neurology' paper which seems to have disappeared from his self help site) TV representation could be a good place to start.

[Lady4]

Apparently, in the medical community the term “Zebra” is universally understood as a reference to a rare condition/disease. Physicians are taught to assume the most likely explanation of the condition and therefore miss more unlikely explanations of the disease.

This phrase continues to be drilled into the minds of Physicians in training:

“When you hear hoof beats, think horses, not zebras.”

I learn't that hEDS. POTS, MCAS all fall under this umbrella and can apparently can overlap.

I totally agree, raising awareness by including it in TV soaps like they included Bipolar in Eastenders, would definitely raise awareness.

I attached a couple of reference papers with the data on them:

Functional neurological signs in hypermobile Ehlers–Danlos syndrome and hypermobile spectrum disorders with suspected neuropathic pain:

pmc.ncbi.nlm.nih.gov/articl...

Hypermobile Ehlers‐Danlos Syndrome: A Prodromal Subtype of Functional Movement Disorders?:

pmc.ncbi.nlm.nih.gov/articl...

[Shimmyaway in reply to Lady4]

Whilst I never saw it myself, I do know that in the former BBC DOCTORS soap, one of the drs had FND... but the soap finished. I wonder how they would get the audience interested in an 18 month wait for an appointment?

[Entwicklung]

So interesting to read this after just looking through this information... eds.clinic/articles/underst... ... I'm researching now as it was clearly EDS that the cardiologist was checking me for at my last appointment. Initially I felt it unusual that a cardiologist start checking my joints, but he explained the possible connections to me. He also mentioned mcas and my main symptoms are many of those seen in POTS. This is all fascinating to learn about and it's early days but it gives me a lot of faith that I'm on the right path and have found the right knowledgeable and kind doctor to help me.

[Shimmyaway in reply to Entwicklung]

Glad that you are closer to getting to the root causes of your problems .. eine gute Entwicklung, at last!

[Entwicklung in reply to Shimmyaway]

Hahaha - indeed it is!! ❤️

(Yes I had to Google the first bit 🤣)

[Lady4]

Knowledge is powerful and education is key, you also have the official EDS site.

Google this: Diagnostic Criteria for Hypermobile Ehlers-Danlos Syndrome (hEDS)

Its a check list to give to your Doctor/Specialist.

[Entwicklung in reply to Lady4]

Ah this is great thank you ⭐ !

[Shimmyaway]

Yes, an MD team is very important to guide us on our way, but guidance must be a result of a thorough assessment ..which I wonder if we can get .. with physical symptoms being investigated by neuropsychiatrists who either do not see the patient face 2face or rely on the standard neurological test, which may not reveal the individual's difficulties.

Another reason to get FND out of the DSM, so neurologists can take over the baton ...if they show willing that is?

[Lady4 in reply to Shimmyaway]

I just had the draft OT report and a Dr appt and requeated neuro PT, I explained the report shows how he would benefit and we needed guidance. I have to drop the final copy in for him to see.