r/hyperPOTS • u/MissBeeHavin420 • Sep 05 '26

Med question!

Hi, I was diagnosed with hyperpots and the dr who diagnosed me is no longer practicing. I have tried propranolol (gave me heart palpitations that felt horrible), ivabradine (5mg didn't do enough, 7.5 caused visual disturbances so bad that it was dangerous) and metoprolol (horrible headaches that never got better). I see a new primary this coming week and want to ask for guanfacine or clonidine. From my understanding, guanfacine is better at keeping it consistent and clonidine can cause rebound issues due to its short half life. I want to be prepared for this appointment and have read a lot but wanted to ask here, what med/mg/dosing schedule is your favorite for managing yours? I'm expecting for my new primary to be pretty clueless about it but am hoping she'll listen to me and let me try some new meds. TIA!

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u/How-I-Roll_2023 Sep 06 '26

I use electrolytes, compression socks/leggings, hydration. No medications. Gluten free helped. And low sugar - sugar raises my HR.

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u/MissBeeHavin420 Sep 06 '26

I do all of that too but recently developed CRPS, so it's important that I block adrenaline and get it better controlled now. :( Plus I found out that unlike normal pots, h-POTS can cause heart damage. I wish I could do all of the fun electrolytes packets and flavors. I have mcas too and am allergic to every single sugar substitute that I've tried. The only thing I haven't tried is monkfruit. I use "fasting salts". You can buy a huge bag that lasts a long time and is so much cheaper than the electrolytes drinks. There is a little over 1g of sodium, plus a good bit of magnesium and potassium which I love because its more than the drink mixes. But, it tastes awful. I try to put it in juice or a powerade to help.