Is there such a thing as "intermittent" POTS???

[ehc918]

I have some degree of OI although I've never passed out. I get lightheaded and positional vertigo sometimes. I have general brain fog/grogginess/vertigo most of the time.

I've had the "poor mans" test of supine HR/BP, upright HR/BP which is always normal. Even though I had an out of network rheum suggest I had dysautonomia/poor brain perfusion and he recommended a full POTS work up, my primary disagreed and wouldn't refer me. I couldn't even get a cash appt for the tests they were too expensive. However, sometimes when I stand up I get super pounding heart and SOB. I've recently gotten a watch that tracks HR and have managed to capture this info:

My average sitting/restingHR is around 65.

6/10 HR went to 115 bpm after standing
6/16 HR went to 137 bpm after standing
6/22 HR went to 105 bpm after standing

Usually resolves within a few minutes then settles to around 80 bpm.

Maybe this is normal. I haven't been able to find any research about "intermittent" POTS...

 

[Hip]

You should really test your heart rate both before standing, and as well as after standing. And you want to relax in a lying down position for around 10 minutes before you stand up, to ensure you are measuring your resting heart rate.

If at any time in the 10 minute period after standing your heart rate increases by 30 bpm in relation to the rate when you were lying down, then you are diagnosed with POTS.


POTS is usually worse in the morning, so if you perform this test in the morning, you may get higher increases in heart rate on standing. I find it convenient to test as I am getting up in the morning, as I know I am fully relaxed from a night's sleep.

POTS tests will vary from day to day. On some days I find my increase in HR on standing may be as low as 20, on other days it can be as high as 60. But mostly it is around the 30 mark.


I've not come across intermittent POTS, but thinking about the connection between craniocervical instability and POTS (see the CCI threads), perhaps if you had CCI, and if you held your head in certain positions, it might make the POTS either better or worse, by the way the neck position compresses the vagus nerve. That's the only thing I can think of.

 

[ehc918]

Thank you for your response!

My issue is that previously whenever I’ve tried a prospective HR study, I can’t catch these episodes. I’ve done several home tests where I lie down for several minutes, then just stand in place for 10min. I suppose I could just start tracking each day and see.

Since I’ve gotten this fancy schmancy watch that tracks my HR, whenever I feel palpitations or racing heart I open the app on my watch and then screenshot. It’s usually right after standing or when I’m just walking around without doing anything particularly exerting. The HR app records my HR throughout the day and gives me stats such as lowest HR, average HR, etc.

Oh the joys of symptom ambiguity

 

[Hip]

Since I’ve gotten this fancy schmancy watch that tracks my HR

Have you checked the accuracy of your watch, and whether the accuracy varies depending on where it is positioned on your wrist?

You can measure heart rate by counting your pulse, and then compare to the readings given on the watch.

 

[ehc918]

Yup. I'm kind of a nerd and used to work in emergency/critical care vet medicine so I'm super particular about data. I like to check, check, and then double check. My app actually has a cute little "beating heart" icon that matches my pulse. But I always do a double check with my jugular. Thank you!

 

[Celandine]

My daughter's POTS definitely has flares and calmer periods. Her POTS can be associated with exertion/PEM, monthly cycle, weather, foods that activate mast cells, etc. And, of course, all the unexplainable variations. If you go over to DINET, the Dysautonomia International forum, loads of people talk about the inconsistency of their POTS symptoms.

 

[ehc918]

Thank you for your response. I did tons of research into this back in 2016 (I actually “diagnosed” a friend who had a traumatic brain injury and she was officially diagnosed at Cedar Sinai in LA) but couldn’t find anything about “intermittent” symptoms.

Do POTS peeps have upright HR that is always elevated 30bpm over average? Like walking around with HR >100bpm all of the time? Or is it usually upon rising and then “normalizes”?

According to my watch monitor, today my resting HR average was 58bpm and average walking is 101 bpm. Currently sitting here as I type it’s 76bpm.