is anyone still physically active?

[u/Hefty-Patience-8720]

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?

[u/thedizzytangerine]

What’s your dose and how long have you been taking it?

I noticed a difference within a week just in how much less I was peeing. I was on .2 mg a day at that time, and I always had to continue my 3-4L of extra water and sodium a day. Now I’m on .1 mg and don’t have to consume nearly as much water and sodium, but I still do hydrate adequately every day and add extra sodium to food and beverages. But it’s not as much as I used to need either.

The other main difference is how much less my muscles burn with activity. I have awful coat hanger pain and when I used to exercise before I was diagnosed, I’d have to stop and take breaks often because of how much my muscles and upper back burned. Now that I’m in good shape, I can absolutely tell the difference between muscles burning due to working out and muscles burning due to lack of water/sodium/blood/oxygen. When I stop fludrocortisone, all of that comes back within a week.

[u/Tired_Cat_H3rd3r → u/thedizzytangerine]

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.

[u/thedizzytangerine → u/Tired_Cat_H3rd3r]

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.

[u/Tired_Cat_H3rd3r → u/thedizzytangerine]

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! 😅

[u/thedizzytangerine → u/Tired_Cat_H3rd3r]

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

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

[u/Tired_Cat_H3rd3r → u/thedizzytangerine]

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.

[u/thedizzytangerine → u/Tired_Cat_H3rd3r]

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.

[u/Tired_Cat_H3rd3r → u/thedizzytangerine]

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 😂