POTS (misleading name)

[Sea otter]

Anyone thinks POTS has misleading name? Doctors, from my own experience, think we should be having symptoms only when standing. Why noone isn't mentioning patients can have bunch of symptoms also when they are sitting or laying down? It's a syndrome which means group of symptoms. Anyone have link for some good article or study about that? Thank you.

[MikeO]

20 minutes ago, Sea otter said:

Anyone thinks POTS has misleading name? Doctors, from my own experience, think we should be having symptoms only when standing. Why noone isn't mentioning patients can have bunch of symptoms also when they are sitting or laying down? It's a syndrome which means group of symptoms. Anyone have link for some good article or study about that? Thank you.

Diagnostic Criteria
The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing, in the absence of orthostatic hypotension. nothing more....

I do not have POTS but am considered nOH but yet i have the same group of symptoms that POTS folks complain about. so do i get diagnosed just by GI issues? and call it POTS or nOH?

Yes IMO term POTS is misused.

[Sea otter]

8 minutes ago, MikeO said:

Diagnostic Criteria
The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing, in the absence of orthostatic hypotension. nothing more....

I do not have POTS but am considered nOH but yet i have the same group of symptoms that POTS folks complain about. so do i get diagnosed just by GI issues? and call it POTS or nOH?

Yes IMO term POTS is misused.

https://youtu.be/ucgaUP6Ip4E?feature=shared

[Sarah Tee]

Dr Satish Raj usually has a slide on the groupings of symptoms near the start of his lectures. I believe I have heard him or another one of the experts say that they do not particularly like the name either.

The possibly first modern study (in English anyway) called it something like idiopathic hypovolemia.

Yep, here is the abstract just for interest:

https://pubmed.ncbi.nlm.nih.gov/3511818/

Idiopathic hypovolemia is also not a good name. We now know other types of dysautonomia, CFS and some others that I’m probably forgetting come with low blood volume, so it’s not specific enough.

I think naming conditions after the doctor that discovers them is better, because then the name can’t mislead. Schondorf-Low Syndrome, anyone?

[Sarah Tee]

Dr Novak calls POTS and adjacent conditions orthostatic intolerance syndromes (as a group). Still not much better.

[albertspa]

"The emphasis on postural tachycardia does, however, have a disadvantage in that it ignores nonorthostatic symptoms"

Low, P. A., Sandroni, P., Joyner, M., & Shen, W.-K. (2009). Postural Tachycardia Syndrome (POTS). Journal of Cardiovascular Electrophysiology, 20(3), 352–358. https://doi.org/10.1111/j.1540-8167.2008.01407.x

[MikeO]

25 minutes ago, albertspa said:

"The emphasis on postural tachycardia does, however, have a disadvantage in that it ignores nonorthostatic symptoms"

This is also true for other Dysautonomia types (i.e...PAF, nOH, OH etc...) as folks with these will also have the syndrome symptoms that POTS folks experience.

[Sea otter]

1 hour ago, MikeO said:

This is also true for other Dysautonomia types (i.e...PAF, nOH, OH etc...) as folks with these will also have the syndrome symptoms that POTS folks experience.

True. We all have similar symptoms. At least we have diagnosis, but term for it and a lot of other things are unfortunately very confusing and misleading. 

[Pistol]

I have NCS and HPOTS, both vague descriptions of what is going on, both are dysautonomias. I think why they came up with these names is because they had to find some symptoms to differentiate this syndrome from others. So POTS has most symptoms of other dysautonomias but can be differentiated by the increase of HR upon standing. So they called it that. NCS ( neuro-cardiogenic syncope ) is named this after testing concluded that the heart is structurally sound, there is no arrhythmia or other underlying cause for the syncope and it has been proven ( usually by TTT ) that there is a sudden drop in BP and HR upon being upright, leading to pre-syncope or syncope. So they call it that - and in my case it is a blessing because whenever I pass out they know what it is and they dont have to do myriads of tests. 

[Sarah Tee]

Hmm, perhaps I was too hasty. If you read it as “a type of dysautonomia characterised by postural tachycardia”, that makes more sense.

But I don’t think people read it like that, doctors or laypeople. I think they read it as tachycardia causing or at least leading the syndrome, and think that fixing the tachycardia will fix POTS. And then, confusingly, some people feel better when their tachycardia is controlled and some don’t.

Syndromes!