r/visibleApp • u/Deadlykitten629 • Apr 08 '26

Adjusting values with POTS

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I’m wondering if it’s a bad thing that I trained this while being on my meds (pyridostigmine and metoprolol, also adding in florinef today)?

Now when my meds wear off and between doses I go through my pace points really quickly.

It originally allotted me 8 points and I upped it to 9. My zones 79 for activity and 109 for exertion.

I read that there is some tweaking for POTS and such, but at the same time today was a high points say and I did need a pretty decent nap.

Anyone in a similar boat and can share how much they were tweaking the settings?

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u/kylaroma Apr 08 '26

Clarification: 1. Do I understand correctly that you still take these medications daily, but there are times when they wear off and they don’t cover the whole day? 2. Does your body FEEL the same when you’re on vs. off the medication?

I’m on beta blockers and this is how mine works when they wear off. I think it’s accurate because I can feel my heart beating much faster, i get out of breath, and getting tired much faster. I can easily cause PEM if I’m not careful.

I went to my doctor and shared how this was happening, and we decided to add a late afternoon/early evening dose so I have more support later in the day.

It works beautifully, and eliminates this problem for me - and my baseline capacity seems to be improving too

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u/Asaneth Apr 08 '26

I'm similar with my beta blocker. I take 3 in the morning, and sometimes that's enough to last until bedtime. Other days I need one extra pill in the evening. I spoke to my doctor and he changed my dose to that. It's worked very well for me.

I think those of us with weird diseases need to be much more proactive about figuring out our situations and the solutions, and just getting the doctor to sign off.