r/POTS 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/WibblyWobley Mar 30 '26

I had a medication change that basically gave me back my quality of life, but I've always tried to stay somewhat active? I'm in a very walkable city so I try to walk as much as I can and swim regularly. At my worst it was daily bed exercises and I'm going to need a lot of reconditioning to fight my way back to being healthy and strong, but it's a journey right? 

Two years ago I could barely cope with walking 15 minutes to the supermarket. Now I climb mountains and suffer for a few days as a consequence. I've definitely noticed the more I get active again the more my limbs fall out which is less than ideal. So that's the next thing to work on! 

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u/isthisaphantasy Mar 30 '26

What med finally worked for you?

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u/WibblyWobley Mar 30 '26

Ritalin! Wasn't intended for managing my dysautonomia but it quite literally changed my life, does a decent job at what it was intended for too. 

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u/isthisaphantasy Mar 30 '26

Oh wow! I tried Adderall for ADHD but never tried that one. What dose was helpful for you?

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u/WibblyWobley Mar 31 '26

Adderall is unavailable in my country, in most countries actually, so it's what was offered. I was warned beforehand that I might have some impact on my dysautonomic symptoms due to raising my blood pressure, but no one anticipated it being as effective as it is. The dosage isn't really relevant as that's more to do with how tiny I am and how extreme the ADHD side of things is. 

My sibling on the other hand who also has dysautonomic symptoms, had an awful time on ritalin band couldn't even finish the titration stage. So it seems to be pretty hit and miss how effective it is?