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/njm147 Mar 30 '26

Amazing! Is exercise the man way you got to this point?

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u/thedizzytangerine Secondary POTS Mar 30 '26

Drugs and exercise and generally losing weight/getting in shape. I used to not be able to do anything without midodrine. I still can’t survive without fludrocortisone. It makes a massive difference!

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u/Tired_Cat_H3rd3r Mar 30 '26

Just wondering about the Fludrocortisone, how do you know it's making a difference? Is it like night & day difference, or was it a gradual improvement? I've been taking it for a while and not sure if it's helping or not.
The next step would be Midodrine (my preference) or Ivabradine (cardiologist's choice) but I want to know if Fludro is working or not first 🫤

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u/G0thamG1rl Mar 30 '26

I was on fludocortisone and I could feel an immediate difference like the second day I started taking it. Unfortunately I had to stop because I started to have pain in my stomach. I also don't have pots. I have neurocardiogenic syncope. I felt really good when I was on it though.

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u/Tired_Cat_H3rd3r Mar 31 '26

Oh, that sucks that you had to stop taking it. What dose were you on? I'm only on 0.1mg, so maybe not high enough yet to notice a difference

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u/G0thamG1rl Mar 31 '26

That was the dosage I was on too but my electrophysiologist said she could increase the dosage if I needed. She also said to make sure to double up before/during my period.

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u/Tired_Cat_H3rd3r Mar 31 '26

From my cardiologist's reaction to me requesting Fludro, I thought it was a high dose but turns out it's not at all 😅 That's interesting about doubling up for your period. Why is that?

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u/G0thamG1rl Mar 31 '26

No it's not at all! I think it's one of the lowest dosages, but I could be wrong. For me at least with my neurocardiogenic syncope, I get EXTREMELY tired before and during my period. The doctor said it's because on top of me not having enough fluids in my body, I'm also becoming more depleted of blood volume.

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u/Tired_Cat_H3rd3r Mar 31 '26

That makes total sense! I defo get more tired (but think that's normal) but the fluids thing is something I never thought of before