POTS - definition, diagnosis and symptoms

[It's M.E. Linda]

May I cross reference you all to this new thread please?

https://www.s4me.info/threads/cereb...n-or-tachycardia-van-campen-et-al-2020.13583/


This is exactly the sort of thing that I experienced, @Tom Kindlon
I have my diary notes from the day of the tilt.

 

[Sly Saint]

Moved from the Long covid thread

Postural Orthostatic Tachycardia Syndrome) because it's so new.

"
History
In 1871, physician Jacob Mendes Da Costa described a condition that resembled the modern concept of POTS. He named it irritable heart syndrome.[22] Cardiologist Thomas Lewis expanded on the description, coining the term soldier's heart because it was often found among military personnel.[22] The condition came to be known as Da Costa syndrome,[22] which is now recognized as several distinct disorders, including POTS.[citation needed]

Postural tachycardia syndrome was coined in 1982 in a description of a patient who had postural tachycardia, but not orthostatic hypotension.[22] Ronald Schondorf and Phillip A. Low of the Mayo Clinic first used the name postural orthostatic tachycardia syndrome, POTS, in 1993.[22][114]"

wikipedia

thread on 'soldiers heart'
https://www.s4me.info/threads/soldier’s-heart-the-forgotten-circulatory-neurasthenia-–-a-systematic-review-borges-et-al-may-2020.15310/

eta: and of course the NHS know all about it!
PoTS https://www.nhs.uk/conditions/postural-tachycardia-syndrome/

 

[Mij]

Examples of diseases in which secondary dysautonomia can occur include:

• Diabetes.
• Parkinson’s disease.
• Muscular sclerosis.
• Rheumatoid arthritis.
• Lupus.
• Sjogren's syndrome.
• Sarcoidosis.
• Crohn’s disease, ulcerative colitis.
• Celiac disease.
• Charcot-Marie-Tooth disease.
• Chiari malformation.
• Amyloidosis.
• Guillain-Barre syndrome.
• Ehlers-Danlos syndrome.
• Lambert-Eaton syndrome.
• Vitamin B and E deficiencies
• Human immunodeficiency virus (HIV).
• Lyme disease.

Post infectious POTS and autonomic nervous system dysfunction is 'new' and 'alarming', but ME/CFS is still considered 'mysterious'.

 

[Trish]

Thanks, @Mij. Can you link to the source of that list?

 

[Mij]

Done.

 

[rvallee]

"
History
In 1871, physician Jacob Mendes Da Costa described a condition that resembled the modern concept of POTS. He named it irritable heart syndrome.[22] Cardiologist Thomas Lewis expanded on the description, coining the term soldier's heart because it was often found among military personnel.[22] The condition came to be known as Da Costa syndrome,[22] which is now recognized as several distinct disorders, including POTS.[citation needed]

Postural tachycardia syndrome was coined in 1982 in a description of a patient who had postural tachycardia, but not orthostatic hypotension.[22] Ronald Schondorf and Phillip A. Low of the Mayo Clinic first used the name postural orthostatic tachycardia syndrome, POTS, in 1993.[22][114]"

wikipedia

thread on 'soldiers heart'
https://www.s4me.info/threads/soldier’s-heart-the-forgotten-circulatory-neurasthenia-–-a-systematic-review-borges-et-al-may-2020.15310/

eta: and of course the NHS know all about it!
PoTS https://www.nhs.uk/conditions/postural-tachycardia-syndrome/

And let's be honest here, POTS is clearly whatever physicians used to call "fainting women" back then, just as "neurasthenia" was early description of ME. Descriptions of this likely date back several centuries, it's just that no one was able to see enough patterns. But to call this new is basically on the level with calling electric power new. By the standards of our entire history, it's pretty new, but since it literally predates the professionalization of medicine, it's a very mediocre excuse.

 

[Mij]

 

[ahimsa]

This is a decent article about POTS following Covid infection:

https://www.smh.com.au/lifestyle/li...w-is-it-related-to-covid-20230529-p5dc3v.html

I was surprised the article didn't mention either the tilt table test or the NASA lean test.

The NASA lean test is less sensitive than a tilt table test. It could miss a lot of cases of NMH - neurally mediated hypotension, delayed drop in blood pressure. But from what I've read the NASA lean test should catch most cases of POTS. I believe it's much better than the old lie down/sit/stand test so often done in the doctors office to test for the more common initial hypotension that starts right when you stand up.

 

[Dolphin]

(There may be a better thread for this)

 

[Dakota15]

Presentation now online from this week's: "Could a Common Condition Called POTS Explain My Chronic Fatigue Syndrome? (Tae Hwan Chung, MD, Director/Founder, Johns Hopkins POTS Clinic Program)

(~57 minutes)

 

[Ash]

Posts moved

The issue with this test is very simple in practical terms:
There are loads of reasons for why someone would be flagged by this test that has nothing to do with their ME/CFS.
There are also loads of reasons for why someone with ME/CFS would not be flagged by this test.

This is mainly caused by two factors:
The lack of a closely matched control group and no grounding in biological processes known to be causally involved in ME/CFS.

Therefore, this test can’t ever validated a diagnosis.

Using this test to validate a diagnosis is just as nonsensical as using CPET to validated the disability for disability benefits, or using a tachycardia upon standing as a diagnostic feature for the (very flawed concept of) POTS or even OI in general.

Why are POTS and OI in general flawed concepts?

 

[Utsikt]

Why are POTS and OI in general flawed concepts?

Sorry, only POTS is.

POTS implies that there exists a syndrome where tachycardia upon standing is key to the syndrome. That doesn’t seem to be the case, and regardless it’s pure speculation.

OI is just «intolerance to not being horisontal». The use of HR to measure OI is flawed for much of the same reasons as for POTS - HR might not be relevant at all.

 

[Ash]

Sorry, only POTS is.

POTS implies that there exists a syndrome where tachycardia upon standing is key to the syndrome. That doesn’t seem to be the case, and regardless it’s pure speculation.

OI is just «intolerance to not being horisontal». The use of HR to measure OI is flawed for much of the same reasons as for POTS - HR might not be relevant at all.

For OI, one could have symptoms other than raised HR or in addition to this, but is HR not measured because it can be measured and it is a common symptom that some or perhaps many people find tracks well enough with their other symptoms for it to be worth paying attention to?

As for POTs I am confused by this category generally. But is it not useful to have over not having it because so many people find medications and lifestyle changes associated can help them to expand their capacity for activity and living life rather than lying down and suffering?

Or do you mean it’s been sufficiently studied to discredit it whatever ‘it’ is supposed to be?

Or if it’s just that ‘it’ had no business emerging as a construct, then is that the problem itself?

Or maybe patients could get to something better a better more solid outline of what’s wrong without it do you mean, like a neurological immunological or cardiovascular disease etc identified?

 

[Utsikt]

For OI, one could have symptoms other than raised HR or in addition to this, but is HR not measured because it can be measured and it is a common symptom that some or perhaps many people find tracks well enough with their other symptoms for it to be worth paying attention to?

We have no indication whatsoever that this is the case. It’s pure speculation.

As for POTs I am confused by this category generally. But is it not useful to have over not having it because so many people find medications and lifestyle changes associated can help them to expand their capacity for activity and living life rather than lying down and suffering?

Every single trial for POTS interventions have failed or been subject to so much bias that it’s impossible to get anything meaningful from it. People are eager to interpret causality into everything they do. If we’re to listen to that we should also listen to those that say that their medallion helped them.

Or do you mean it’s been sufficiently studied to discredit it whatever ‘it’ is supposed to be?

The burden of proof goes the other way. The proponents of POT as a syndrome are the ones that have to argue why it must be. They have not.

 

[Jonathan Edwards]

For OI, one could have symptoms other than raised HR or in addition to this, but is HR not measured because it can be measured and it is a common symptom that some or perhaps many people find tracks well enough with their other symptoms for it to be worth paying attention to?

In the commonest form of OI, with fainting, the heart rate slows. In POT it speeds up, but it does not seem clear why or if the speeding up is a problem in itself, rather than the OI.

But is it not useful to have over not having it because so many people find medications and lifestyle changes associated can help them to expand their capacity for activity and living life rather than lying down and suffering?

Do we know that these treatments actually work though? Lot of people take supplements and homeopathic remedies and say they expand their capacity etc. when we have no good reason to think they do.

 

[Ash]

The burden of proof goes the other way. The proponents of POT as a syndrome are the ones that have to argue why it must be. They have not.

I think that was the note that I finished with, I understand the requirement.

I was just wondering since medicine often doesn’t meet such requirements, why this particular category specifically was problematic.

I’ve read a fair amount about POTs and I still don’t understand what it’s supposed to be exactly.

I’ve also read a fair few people dissecting POTs, and dismissing it, I think that where I’d stand.

But, I struggle to retain any of this information. I’m not in disagreement with your initial statement, I really couldn’t remember the info on this category.

 

[Utsikt]

Copied post (part relevant to this thread)

I think that was the note that I finished with, I understand the requirement.

I was just wondering since medicine often doesn’t meet such requirements, why this particular category specifically was problematic.

I’ve read a fair amount about POTs and I still don’t understand what it’s supposed to be exactly.

I’ve also read a fair few people dissecting POTs, and dismissing it, I think that where I’d stand.

But, I struggle to retain any of this information. I’m not in disagreement with your initial statement, I really couldn’t remember the info on this category.

I don’t really care too much about what’s become standard. I only care about what’s logically sound. And POTS is not. I just used it as an example of similarly bad practice.

 

[MelbME]

We have no indication whatsoever that this is the case. It’s pure speculation.

Every single trial for POTS interventions have failed or been subject to so much bias that it’s impossible to get anything meaningful from it. People are eager to interpret causality into everything they do. If we’re to listen to that we should also listen to those that say that their medallion helped them.

The burden of proof goes the other way. The proponents of POT as a syndrome are the ones that have to argue why it must be. They have not.

You probably know this but my understanding is that POT is postural orthostatic tachycardia, it occurs in healthy people too. You stand and your HR jumps up and stay up by 20bpm from resting for over 10 minutes.

POTS is that you have a suite of symptoms along with POT.
Clinicians are confident a patient has POTS when they use a treatment to fix the POT (midodrine, mestinon) and all the other symptoms (fatigue, brain fog, etc) get significantly better or completely resolve.

Because POT can just exist in people without symptoms, it is possible that you just happen to have POT and it doesn't bother, then you get ME/CFS or another syndrome with a suite of symptoms that means you can now meet a POTS diagnosis. Makes it quite messy though, as the average person isn't tested for POT until they show symptoms of the syndrome.

 

[ChronicallyOverIt]

You probably know this but my understanding is that POT is postural orthostatic tachycardia, it occurs in healthy people too. You stand and your HR jumps up and stay up by 20bpm from resting for over 10 minutes.

We could probably move this to an entirely new thread but I was always told it was 30 bpm. Along with that most POTS patients bpm trend up over that 10 min instead of down.

POTS for me was rather sudden after a particularly bad crash and not a gradual thing that crept overtime. Suddenly not being to tolerate being up right was a very scary thing.

I find it interesting that people here think POTS is not treatable? It seems to me to be one if the only things that can be treated with a measured effect? Take medication = postural heart rate go down == patient feel better. Also isn’t it part of the CCC criteria? If we say there’s no CFS treatment, does that include not treating POTS?

 

[Utsikt]

You probably know this but my understanding is that POT is postural orthostatic tachycardia, it occurs in healthy people too. You stand and your HR jumps up and stay up by 20bpm from resting for over 10 minutes.

I thought tachycardia referred to a resting HR above 100 bpm? So POT would be resting HR > 100 bpm while standing but not lying down?

POTS is that you have a suite of symptoms along with POT.
Clinicians are confident a patient has POTS when they use a treatment to fix the POT (midodrine, mestinon) and all the other symptoms (fatigue, brain fog, etc) get significantly better or completely resolve.

Is there any reliable evidence that the HR is directly tied to symptoms? Do you have any examples?

And do you have any evidence from properly controlled trials wrt the treatments?

Because POT can just exist in people without symptoms, it is possible that you just happen to have POT and it doesn't bother, then you get ME/CFS or another syndrome with a suite of symptoms that means you can now meet a POTS diagnosis. Makes it quite messy though, as the average person isn't tested for POT until they show symptoms of the syndrome.

This makes no sense to me, and just illustrates how useless the concept of POTS is. Why would you centre the syndrome around POT when POT can frequently occur without the other symptoms?