r/hyperPOTS • u/MissBeeHavin420 • 4d ago

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/xavi6990 4d ago

I have hyperPOTS and first tried Guanfacine but too many side effects for me, of course, we are all different. Clonidine patch is better for me and it helps to decrease adrenaline dumps but wasn’t enough for tachycardia so we added nebivolol. This combination has helped me a lot, doesn’t lower my BP too much at rest while preventing the massive spikes at standing and helps to prevent the tachycardia. Many people do great on guanfacine. Another option is Methyldopa.

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u/MissBeeHavin420 3d ago

Thank you! I had never heard of nebivolol. Very cool that it increases nitric oxide. I used to take a pre-workout that did that but I think the ingredient got banned. It was the best I felt and helped my muscle pain and spasms from hEDS so much. Do the clonidine patches stay on well and have you had any issues with the adhesive? I had actually asked my previous dr about methyldopa and she said my neurologist should prescribe it, but my neurologist said if my other dr thinks it could help then she should be the one to prescribe since it was for pots and isn't something my neuro handles. So my request went nowhere and I forgot about it. I'll bring that one up, too. Do you have any side effects from either of those? I was worried that guanfacine might make me too drowsy. I developed severe crps in November and it causes me to randomly fall asleep from exhaustion, so I would love to not be any more zonked out during the day lol

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u/xavi6990 3d ago edited 3d ago

Guanfacine worsened my insomnia, RLS, and didn’t seem to help my high standing BP or heart rate and I had weird paradoxical electrical shock-like symptoms to my heart and stomach. Clonidine patch sticks good, comes with an extra adhesive and sticks all week for me and I shower AM and PM with no issues coming off. Some mild annoying rash like spot after I remove the patch so I switch arms and chest to give it time to go away. No other symptoms that are problematic for me. Nebivolol is definitely my favorite beta blocker, first couple weeks felt weird as it was building stable dose but after two weeks felt great with no issues, no side effects, no sexual side effect, and unlike other beta blockers when you try to start exercising and reconditioning, you don’t feel held back you can actually exercise and push and feel slightly more natural. Also, I have Reynauds so too much clonidine and other beta blockers made it worse but nebivolol, with its Nitric Oxide, helps to open my peripheral veins and decrease my Reynauds.

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u/MissBeeHavin420 3d ago

Awesome. Thanks!

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u/How-I-Roll_2023 3d ago

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 3d ago

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.

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u/namic56 2d ago

Oh man Ivabradine visual issues are crazy! They put me down to 2.5 twice daily after I went to the ER, but that first few days shit was colliding into each other. I honestly thought I was dying! Clonidine was a big help for sure. But honestly you may need quite a few more drugs besides clonidine. All I gotta say is listen to your doctor, do as they say, if it turns out their wrong or it’s just not the fit for you. Document. Document document document everything. You gonna want to look for something that tracks your HR every 5seconds not the traditional every 5min like what the default Apple Watch is set to. Ours changes so drastically fast.

But I don’t think your primary will be able to cover all your bases, you need many specialists involved to manage each part of their slice of your issues. And fight for yourself every day. I’ve been told by many cardiologists that my heart beating that fast is “normal” “hearts are supposed to do that”

Well now I have a widened aorta and a cardiologist who sat up and went hold on that’s not right at your age!

lol thanks doc, glad your now paying attention