Tests May Miss Often Miss Postural Orthostatic Tachycardia Syndrome (POTS)

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Among the POTS patients, 82.6% fulfilled the diagnostic criteria for POTS in the morning and 52.2% in the afternoon.

This study found that many people who meet the criteria for POTS in the morning don't do so in the afternoon.

It also found that most people who eventually test positive for POTS pass a single POTS; i.e. it's probably necessary to test for it several times. This is at least the second study to suggest this is so.

If a doctor schedules you for a POTS test give them this study and try to get it done in the morning, and if possible, get a couple of tests done.

There is a caveat, though. Almost 50% of the people who test positive for POTS don't have any symptoms of orthostatic intolerance. I don't know if anyone knows why some people with hearts racing have issues while others don't. Clearly more than the heart rate is involved, though.

This big difference between POTS tests in the morning vs afternoon brings up the question whether you are a morning or evening person. Before ME/CFS I couldn't say, but after ME/CFS it's clear I'm not a morning person. All my symptoms are worse in the morning and best in the late afternoon or evening.

Take the "Best time of the day poll" here and let us know.

J Am Soc Hypertens. 2016 Mar;10(3):263-70. doi: 10.1016/j.jash.2016.01.011. Epub 2016 Jan 19.The complexity of diagnosing postural orthostatic tachycardia syndrome: influence of the diurnal variability.Moon J1, Lee HS2, Byun JI2, Sunwoo JS2, Shin JW3, Lim JA2, Kim TJ2, Shin YW2, Lee KJ2, Jeon D2, Jung KH2, Lee ST2, Jung KY2, Chu K4, Lee SK5.

We investigated how the diagnosis of postural orthostatic tachycardia syndrome (POTS) would be changed due to diurnal variability inorthostatic tachycardia. The orthostatic vital sign test was administered to each patient twice, in the afternoon of the day of admission and the next morning (n = 113). Forty-six patients were diagnosed with POTS, and the remaining 67 patients were assigned to non-POTS group. Heart rate increments after standing were larger in the morning than in the afternoon in every group (all P < .001).

Among the POTS patients, 82.6% fulfilled the diagnostic criteria for POTS in the morning and 52.2% in the afternoon. Most POTS group (65.2%) displayed normal result on single orthostatic vital sign test. Orthostatic intolerance symptoms were provoked in only 45.7% of the POTS patients, more frequently in the morning.

In conclusion, diurnal variability in hemodynamic parameters and provoked symptoms significantly challenged the diagnosis of POTS.
 
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h3ro

Active Member
I'm a morning person now. I deteriorate quite drastically as the day progresses. Before CFS it was the opposite.
 

Issie

Well-Known Member
I'm a pretty severe HyperPOTS. Was first DXD in afternoon. No denying it. Morning test, just as positive for me too.

Issie
 

weyland

Well-Known Member
I was tilt tested in the afternoon and the test showed marked POTS. I have the usual ME disturbed sleep cycle though, so afternoon is my morning.

My heart rate is typically the lowest when I wake up. Normally it then increases linearly the longer I am out of bed until I can't stand it anymore and I go lay back down.
 

Issie

Well-Known Member
I was tilt tested in the afternoon and the test showed marked POTS. I have the usual ME disturbed sleep cycle though, so afternoon is my morning.

My heart rate is typically the lowest when I wake up. Normally it then increases linearly the longer I am out of bed until I can't stand it anymore and I go lay back down.
Something that may make you more alert and up - appears that many (most) MCAS people get another surge of seratonin in the afternoons. This wakes us up and gives us that surge and usually issues with insomnia.http://www.iamast.com/medications/4564806907

Your having to lie down is indicative of POTS. It is frustrating, I agree.

Issie
 

San Diego

Well-Known Member
This fits with my experience.

I’ve had several confirmations, including TTT's of my POTS. Normally it’s pretty clear as my HR goes from around 50 to over 140. However, my last TTT was done in the late afternoon and missed it. I thought maybe I’d not been off meds long enough for the afternoon test, but now I wonder. Maybe this is why I’m solidly in the feel-better-in-the-evening camp.

This is a wonderfully useful study.
 

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