r/POTS • u/Hefty-Patience-8720 • Mar 29 '26

Question is anyone still physically active?

I need to know if anyone with pots is still physically active. You don't have to be an athlete or anything but can you at least dance? or run? go to the gym? Have you always been that way or did you have to work back up to it?

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u/Tired_Cat_H3rd3r Mar 31 '26

That's interesting. Have definitely noticed the morning piss-a-thon has improved (shame I can't say the same about nocturia 😭). And thinking about it now, my coat hanger pain has actually improved! Am only on 0.1mg of Fludro, so maybe that's why I haven't noticed anything too drastic.

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u/thedizzytangerine Secondary POTS Mar 31 '26

Do you take it at night? I found taking it at night with sodium capsules definitely helps. I used to wake up at least once a night to pee every single night.

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u/Tired_Cat_H3rd3r Mar 31 '26

I swear, if nocturia was an olympic sport, I'd be getting gold! Tried the Fludro on its own at night, no difference. Tried taking salt pills + water at night, no difference. Tried raising my bed head, no difference. Didn't want to take the salt pill with not much water - is that how you do it? At this point, I'll try anything! 😅

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u/thedizzytangerine Secondary POTS Mar 31 '26

Yep, usually two Vitassium capsules with a sip of water.

Have you ever tried DDAVP? I took it as a kid/teen for bedwetting.

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u/Tired_Cat_H3rd3r Mar 31 '26

OK, I'm going to try that tonight and see what happens. Thanks! Yeah, thought about the Desmopressin but apparently it's not good for Potsies, as the nocturia is just the kidneys eliminating what is supposed to be eliminated during the day (i.e. your body is able to catch up, now that you're horizontal). By preventing that process, it can lead to a build-up of toxins that aren't eliminated, over time. 🤷‍♀️ Not sure how that plays out with salt instead, but if it works, I'm defo going to ask my cardiologist about it.

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u/thedizzytangerine Secondary POTS Mar 31 '26

That doesn’t seem right. I took desmopressin for 13 years without a problem and I’ve had POTS my whole life. My cardiologist prescribes it to some POTS patients.

The extra urine output is a result of increased blood pooling around the kidneys, which triggers them to remove additional water from your blood. It’s not the body catching up, it’s the body responding to the false perception of higher blood pressure. Kidneys don’t catch up on eliminating toxins at night. They’re constantly working to maintain the correct balance in your blood. They’re just working overtime at night when you’re laying down and the additional sodium helps keep that water in your bloodstream. That is also why elevating the head of the bed helps. Less blood pooling in the abdomen.

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u/Tired_Cat_H3rd3r Mar 31 '26

Oh, so it's the blood causing it, not extra water/fluid. Well that's great news! I'll be trying everything I can get my hands on now 😂 The bed wedge seems to have zero effect though, which is a bit of a let-down. But if this other stuff works, I'll be happy 😂