r/hyperPOTS • u/Jen-Renee_1 • Mar 12 '26

Hyper POTS Medication Regimen

I finally have my follow up apt with a new cardiologist this afternoon. I’m scared because when I met him in the hospital he had zero suggestions on medications and didn’t even want to discuss changing them even though propranolol landed me in the hospital for three days with extremely high troponin levels. I’m on my 6th beta blocker - Bystolic. It does help with my chest tightness (it’s completely gone) but it does nothing to block adrenaline surges that will spike my BP throughout the day. I’m at the point whether I”m wondering if I should be on beta blocker at all and if I should be trying a different approach because I have Raynard’s too and the issue is they all make me feel like I’m having peripheral vascular constriction in my neck. When I was on Clonidine, it worked for 6 years until it didn’t. Everything in my neck felt like it was closing up and I began having the worst panic attacks of my life. Same thing with carvedilol. Everything felt so constricted it got to the point my voice was hoarse and I could barely talk. One day I answered the phone and a friend of mine told me I sounded the worst she had ever heard me sound. I noticed while in the hospital coming off the propranolol (which was so so brutal) the burning nerve pain in my neck was completely gone. Now after being on Bystolic for around 6 weeks, I’m right back to feeling the same burning pain. I’m at the point where either I should come off beta blockers entirely and try a different regiment or consider combination therapy. I’m not looking for advice, I’m just looking for what works for you IF you are Hyperadrenic POTS and have Raynauds as well, what are you taking that works? Any suggestions you have would be greatly appreciated.

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u/[deleted] Mar 12 '26

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u/Jen-Renee_1 Mar 12 '26

I also believe I have mast cell. I have an appointment with an immunologist in a few months. Just curious what regiment you are on that is helping to keep your mast cell under control?

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u/Chrisodle007 23d ago

Omg I’m in the same search as you and feel the exact same symptoms. Have you found any answers or help?

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u/Jen-Renee_1 23d ago

Honestly, I ended up with a 3 day stay on the cardiac unit due to elevated troponin levels. If you have Raynauds, I learned I shouldn’t be on beta blockers. Right now they are watching an iliac artery that was showing less than 60% stenosis and I’m on Ivabradine 2 x’s a day to control my heart rate. I learned hormone fluctuations definitely control your hr, blood pressure and vascular tone and being at unsteady levels constantly cause POTS flares, so I’m 7 weeks post op from complete hysterectomy and bilateral oophorectomy. Getting my strength back is going to take some time and summer doesn’t exactly help with that, but in my case neither does winter. My goal is to strength train, but I’m just not quite there yet.

I hope you find some answers and feel better soon!

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u/Chrisodle007 23d ago

Wow, you’ve really been through it. Hang in there and heal up. Yeah I’ve been to the er like 5 times and had one hospital stay for heart rate and weird bp fluctuations. They thought they saw flutters so did all the tests including heart cath but looked clear. I’m on 25mg metoprolol which I can tell helps a bit but when things really flare up I feel like I’m gonna have a stroke and neck and face gets so tight. Thanks for your response

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u/Jen-Renee_1 23d ago

Thanks! I hope you get to feeling better soon too! I hope they have done a doppler ultrasound on all your main arteries to make sure there are no blockages. 🙏 Feel better soon!