POTS on a really bad day

POTS - Postural Orthostatic Tachycardia Syndrome. Taken on a really bad day - heart rate going ballistic from standing up. I forgot to mention the temperature inside was perfect at 71.8F, as also seen on my atomic watch. Normally when I'm lying down or squatting my heart rate is between 45 and 65bpm to begin with (on this bad day it was closer to 65) but rose to the 104 you first get to see due to all of my movement and talking (you actually see it continuing to rise from 104 to 108 while I'm still squatting). The first observed drop was 79bpm in 28 seconds (157 to 78), while the second rise was 68bpm in 20 seconds (79 to 147).

Category:

Education

Tags:

• POTS
• Postural
• Orthostatic
• Tachycardia
• Syndrome
• fast
• heartrate
• rapid
• pulse
• dysautonomia
• hypotension
• OI
• OH
• simbofats
• heart
• rate
• monitor
• watch

[rx2mozart]

you should document your blood pressure, too.

[simbofats]

@rx2mozart: Thankfully, those "really bad days" are rare and it usually doesn't get quite that bad. I have been documenting my BP, but it is not as relevant as the insane HR changes, as I have classic POTS, where BP remains relatively stable (perhaps a narrowing pulse pressure) while everything else goes haywire. Fare well.

[potsinfo]

this is so frastrating. there are different "types" of POTS. Did anyone tell you which "type" you have? For example, the hypovolemia POTS, deconditioning POTS etc.

[simbofats]

@potsinfo: I started out with Hypo POTS with narrowing pulse pressure (120/70 supine to 96/84 standing as one example) but after 2 years and in response to some meds it became Hyper. After stopping most meds my bp has mostly stabilized, but as you mentioned in one of your videos, even with good bp we still get the weeble-wobbles (and sometimes fall down) especially after a couple of minutes of standing time. I'm convinced it's a blood-flow problem in the neck - insufficient flow to the brain.

[potsinfo]

ok. you have a level 4 category POTS then. I have some videos on my channel to help you with some info. Especially yesterday I posted a link to a 28 page article of treatments for POTS ( dysautonomia) please see it on my page, under *important* announcement

[simbofats]

@potsinfo: Yes, I used to frequent ndrf.org and dinet.org some time ago, but had to stay away because I was beginning to drive myself crazy. I've studied Dr. Levine's protocol and it is sound and I'm slowly building back some strength. The only meds I'm still taking are Propranolol and Desmopressin, down from seven different meds at once.

[rx2mozart]

i'm sorry you were having such a bad day

[potsinfo]

I see. Thank you for clarifying. Did you know that POTS is sometimes caused by an "auto immune" disesase. Have you been tested for that at all?

[simbofats]

@potsinfo: It is awful. I've tried over a dozen different medications over the last few years and I'm down to two that help me best, along with recumbent exercises. I'm up to almost 5 minutes of standing time before I need to go horizontal :)

[potsinfo]

Thank you, how you doing? Is anything been helping? Pots is awful at times :(