💕

Have you got a Glucose Monitor like “Freestyle Libre 2” to make sure you don’t have Hypoglycemic POTS? I have to eat every time I start to feel dizzy, hot flashes, and disoriented (even thought my sugar doesn’t drop, apparently it’s on a cellular level that the monitor doesn’t detect sometimes.) Finding this out has been a tremendous life saver as now I have more control over how I feel. Hope this helps.

Did they test for other types of dysautonomia as well? Or just for POTS? Because you could have other dysautonomia issues going on as well as POTS, and that's why water and salt aren't helping much. I haven't heard of Hypoglycemic POTS, though I do have hypoglycemia and have a Dexcom (continuous glucose monitor). My endo can't figure out what my blood sugar does or why, because it will drop when it shouldn't or will stay barely in the 80s regardless of how much sugar I eat. The symptoms I get - if I feel them at all, are more closely related to the symptoms I get from a mast cell reaction, except I also usually have a sweaty forehead. I'd end up taking benadryl when I needed sugar or vice versa, hence getting the Dexcom. But prior to the Dexcom they had me use a meter to measure blood sugar and we could see the trends of my blood sugar dropping at certain points and what symptoms I got and how closely the MCAS and hypoglycemia symptoms matched each other. The Dexcom has helped clarify what is going on so I can treat the right thing right away and not risk blood sugar getting too low, or not taking benadryl when I need it. But I think the first step would be to tell your doctor that your current treatment isn't helping, what symptoms you're getting, how much they affect your life, and can you do further testing for dysautonomia and/or try (new) meds for it to help alleviate symptoms.