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Someone might want to send the author this paper! :facepalm: Effect of High Dietary Sodium Intake in Patients With Postural Tachycardia Syndrome https://www.sciencedirect.com/science/article/abs/pii/S0735109721006306?via%3Dihub

Very true. Time and time again we see these clinicians saying what a heterogeneous bunch we are and that as a result we need a wide range of treatment options available. All sounds pragmatic and reasonable, until you appreciate there's no reliable way to tell us apart other than using their...

Happy to forward the original email chain to MEA parties for full context if they wish to see it. I think Findley's lack of professionalism in my care is enough and there's no need to start with conjecture/hearsay, but when I did raise him coercing me to take drugs I was apprehensive about over...

Unfortunately I can see the similarity in his general behaviour towards me. Something I do remember clearly: He told me he was amazed that I had managed to get a 1st class BSc, but that he wasn't surprised that I had relapsed after trying to work full-time after graduating. The relapse was a...

I saw Findley in 1996 or thereabouts in his private clinic. He was able to get my very severe chronic migraine under control and also diagnosed CFS. I was referred to an OT that taught pacing, from memory there wasn't GET or any funny business. Findley was somewhat arrogant but we didn't have...

Agreed - often hear talk of counter manoeuvres that people have subconsciously adopted before even knowing they have OI. I've personally always scrunched/folded my toes under my feet, presumably keeping calf muscles tense to aid venous return - usually bullied mercilessly for it!! :angelic:

The CFS patients had all been referred to an immunodeficiency outpatient clinic - its reasonable to assume their GP's had suspicion of immune involvement, hence the referral to immunology and not another type of clinic. This can lead to a selection bias that skews the results because its not a...

Until the last few years my sensation of body temperature always went the other way, with PEM or orthostasis I would be sweaty and uncomfortable. Outside of obvious flu infections and the like I'd not get cold. That changed with the onset of hypoglycaemic-type events - I started feeling...

They are apparently available on the NHS but I was advised by consultants that GPs struggle to find them on the system, often easier to just buy commercially.

Amazon have a variety available, search term "abdominal binder". I didn't want to spend too much on a trial so went for a £12 "NeoPhysio" brand. They only last a few months before the stitches start giving up though - will go for something a bit better next time.

I can't tolerate full length trousers most of the time, let alone lower body compression gear. I wear shorts for most of the year and only light trousers in the winter - overheat very easily especially when upright. Something that's well recognised with the hyperadrenergic leaning POTs patients...

There's a useful presentation on this study from the authors here: For what its worth I've been using abdominal compression for a while now and I find it particularly useful after meals, especially if I'm stationary, sitting at my desk. It feels like I can work for longer with it on and I...

ACE2 has been looked at by a few groups in POTS research previously. Findings suggested there is deficiency of ACE2 in POTS patients & increased levels of Ang-II. I found this to be quite an accessible summary (specific paragraphs on Ang-II, ACE2 & Further investigations towards the end) ...

This would get you a hyperventilation syndrome diagnosis pretty quickly in clinics. Its pretty textbook. Forced hyperventilation screens are basically what you describe, taking deep breaths to provoke symptoms whilst watching an etCO2 monitor connected to a nasal cannula - if you're chronically...

Why is a comparison of VE to controls useful in knowing if patients are hyperventilating? Isn't the ratio of VE to CO2 the important factor? If the patient is producing less CO2 for the same VE they will be relatively hyperventilating? Sorry if that's a confused question, asking to learn rather...

Hyperventilation of this variety is commonly seen with POTS patients. Had the same result myself on CPETs, breathing rate far slower than normal but with very excessive volume, at rest and during pedalling. Breathing got a little disordered around VO2max but that may be unrelated. I always...

Abstract Functional autoantibodies directed to the M2 muscarinic acetylcholine receptor (M2R) could affect the heart rate directly by altering cardiac M2R activity and/or indirectly by changing vagal-mediated cardiac M2R activity. We measured M2R autoantibody activity in sera from 10 subjects...

You're definitely not the only one, Goldilocks here as well. The absolute worst for triggering my symptoms is going in and out of the cold in the winter, e.g. shopping. Heatwaves are bad but symptoms tend to be less acute. The acrocyanosis that is very commonly reported with POTS tends to be...

Everyone wants in on the ground floor in case it turns out they "cured" long covid? Good for the CV I suppose... :laugh:

From the paper: -- --