POTS- sustained elevated heart rate or temporary?

[Horizons1]

Seems like a simple question but internet searching yields missing and conflicting information. When standing my heart rate often jumps 30 or more bpm but then usually goes back down after 30 seconds or more.  There’s been a couple of days when it stayed high for hours afterwards.  So is a pots diagnosis temporary or sustained elevated heart rate?

[MomtoGiuliana]

https://www.dinet.org/info/pots/pots-an-overview-r95/:  The criteria for diagnosis of POTS is: (1) a sustained increase in HR of at least 30 bpm within 10 minutes of standing (often with an absolute upright HR ≥ 120bpm); (2) in the absence of sustained orthostatic hypotension (drop in BP > 20/10mm Hg); (3) with symptoms of orthostatic intolerance for at least 6 months. In patients < 19 years of age, there is a higher HR threshold for POTS (increment  ≥40 bpm or absolute uprights HR  ≥ 120 bpm) due to physiological orthostatic tachycardia in adolescents and children (Singer et al., 2012)  (Arnold, Ng, Raj, 2018)

That said I would hope that any specialist would look at all your symptoms any not strictly diagnose you based on this rather rigid criterion observed or not observed in one test.  I think many patients symptoms fluctuate daily, yet they still "have POTS".  I know my specialist said he considers the above but also all the symptoms a patient is experiencing to make a diagnosis and determine treatment.

 

[Sarah Tee]

You can have chronic orthostatic intolerance from autonomic dysfunction with normal heart and blood pressure readings.

For example:

https://www.brighamhealthonamission.org/2019/06/03/expanded-autonomic-testing-helps-to-pinpoint-causes-of-orthostatic-intolerance/

As MomtoGiuliana said, an autonomic specialist will make a diagnosis by looking at your symptoms and ruling out other possible causes. POTS describes one set of symptoms, but there are others, many not even named yet.

For example, my diagnosis doesn’t have a name yet. I would have to call it “chronic orthostatic intolerance, with normal HR & BP, caused by autonomic dysfunction – with a side of presumed low blood volume, postprandial abdominal pooling and severe fatigue”.

Some people call it “POTS without the T” but I feel that is a bit backwards.

[Pistol]

@Sarah Tee 

6 hours ago, Sarah Tee said:

Some people call it “POTS without the T”

My sister has this and has been diagnosed with autonomic dysfunction, autonomic neuropathy, and was diagnosed by skin biopsy with SNF. But in all reality she has what I have - HPOTS - but she does not have the tachycardia. So, she has 98% of the same symptoms as me but cannot be diagnosed with POTS!  

[MikeO]

I have seen the many faces of some of this. Being diagnosed with neurogenic hypotension and yet getting the symptoms of POTS at times. Pretty sure Vandi and a doc here has pointed out this can happen. For sure i do have a autonomic dysfunction. Best take on this is that my NS does not always get the right or appropriate messages when it needs to (mis fire) if you will and gives me issues.

Just one more take on this.   

[MomtoGiuliana]

For me things have changed over time.  As I have gotten older I don't have as significant tachycardia on standing even in a bad flare.  I still have all the other familiar symptoms when in a flare up.  When I was first diagnosed my hr doubled on standing when I was at my worst--from 80 to 160!  I had classic POTS--easily diagnosable (one would think--it still took about a year).  My hr does not climb nearly that high typically now and may not even meet the criterion for POTS.

[Horizons1]

Kind of not direct on topic but does anyone also get really zoned out or in a daze or trance.  It’s one of my most common symptoms.  Especially if my heart starts pounding, I just have to sit and stare blankly and zone out until I start to feel better.  It’s the most outwardly noticeable symptom I have that my friends and coworkers really notice a lot.

[Sea otter]

@Horizons1 I have it. Eyes zoning out a lot, especially when I am tired (like I am overstimulated and need rest, I am aware of everything that is going on). I found out that the celiary muscles in the eyes are also controlled by the autonomic nervous system.