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Feeling Potsy, But Without The Heart Rate Changes Anymore?


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Hi all,

I self-diagnosed POTS after pretty sustained heart rate supine-to-standing changes of 30 bpm and over, measured with both a bp monitor/heart rate monitor and later with a fingertip pulse oximeter. It seemed pretty clear....things like 80 to 120 and 70 to 110 and things like that. Consistent over weeks. Coupled with my symptoms of dizziness and fatigue, it seemed like the clear answer.

Things are a little different lately. I've been doing cardio 3 times a week for about a month and it's been awesome and I've felt better and more functional, but I still sometimes feel POTSy, like this weekend. Yet, I no longer really have the corresponding heart rate changes. Since cardio (usually running about 2 miles), my heart rate has been pretty stable. Going from 70 to 80 supine-to-standing..basically not POTS. It's awesome and I'm so grateful that the exercise program worked so well, but in a way it was almost nice that it used to be that when I felt sort of lightheaded and fuzzy and fatigued I could check my HR and it usually was pretty high...it felt like an explanation for everything.

Now I'm doubting myself re:POTS. Like today. 70 to 72! I mean, that's amazing, but like...I still feel tired, dizzy, and headachey today so it's a little frustrating to see those good numbers. Now I'm wondering "well, what is it?" Does this happen to any of you or are your heart rate changes always over 30 bpm?

Also, my BP, both systolic and diastolic, raises by a good 30/20 when I stand...which I find odd. But I don't have any hyperadrenergic-type sweating, tremor, or anxiety.

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There should be some increase in bp upon standing as that is what compensates for the positional change and gravity. A higher bp is needed to counteract those forces. The question is, are you then getting dips in your bp over a period of time. The 45 minute tilt tests are that long because they are testing for heart rate as well as bp issues. BP issues can take longer than 10 minutes to surface. So, that may be something for you to investigate.

Also, I was wondering if you are upright and being active and then stationary when you are still becoming symptomatic. What I was thinking of was what happens to perfectly healthy runners that do not have POTS. For some, when they run, their muscles are pumping so much blood, that when they stop and there is a sudden slow down in the amount of blood being pumped around the body and they faint. I think it's called "runner's syncope" or something along those lines. Are you moving around, walking/running etc, and then when you stop you become symptomatic?? When I walk, for example the grocery store where I can be fairly steady with the walking, then I get to a register and have to stand still, I can feel the blood draining to my lower body and I become symptomatic but my heart rate hasn't necessarily gone up.

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Interesting. I definitely become symptomatic after walking when I'm standing still. And now that I am pumping tons of salt into my system and wearing compression hose daily I am not having bp/tachy issues often at all. (Compression alone raises my bp 10-15 pts systolic and 5 pts diastolic.) Yet some days I am still symptomatic - particularly brain fog, shaky legs, and dizziness now more than lightheadedness. But I also have Sjogren's so it's not always easy to tease out what is what.

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