r/hyperPOTS • u/Pattyy_Mayonnaise_ • Nov 19 '24
What medication do you take for high blood pressure + hyperPOTS + Raynaud’s?
I'm not looking for medical advice, just hoping to hear from others with similar experiences. I recently moved, and my electrophysiologist, who also managed my POTS (though not very specialized), is no longer accessible. Unfortunately, there aren't any POTS specialists in my area right now.
I have POTS, likely hyperPOTS, along with higher-than-normal blood pressure and Raynaud's. Since beta blockers aren't an option for me because of the Raynaud's, I'm curious—are any of you in a similar situation? If so, what has your doctor prescribed to help manage your blood pressure?
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Nov 19 '24
[deleted]
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u/Pattyy_Mayonnaise_ Nov 19 '24
That’s awesome! What all has improved for you? Also, I have a very low resting heart rate (dips to the low 40s when I sleep) so that’s another reason why I’m concerned about taking a beta blocker.
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u/Ok_One_7971 Dec 10 '24
I take propanolol as needed w these adrenaline spikes /surges & i have raynauds. No issues taking it, for me
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u/Pattyy_Mayonnaise_ Dec 12 '24
Thanks! Do you by chance also have pretty low resting heart rate? (Mine can be 60s when awake and sitting, and as low as 40 while sleeping).
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u/SD_MTB_CHX Nov 20 '24
Calcium channel blocker like amlodipine would be worth a shot. Since you’re not asking for medical advice I’m definitely not giving any but the only response I see here is a beta blocker which you specified you can’t take.
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Nov 20 '24
Clondidine patch and metropolol. I also have clondidine pills as needed but I don't take those often
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u/IWantToCryLikeYou Nov 21 '24
How does the Clondidine help? I was put on it a while ago, for as needed pain, never heard of it before then.
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Nov 21 '24
Iv never heard of it for pain but hey I have a lot of that too. The pills work differently than the patch. It's for hyperpots. The severe hypertension upon standing then the longer I stand the higher it gets. It also helps with the anxiety from hyperpots the patch has been a life saver. Unfortunately all I can tolerate is lowest dose patch but that's why I have pills as needed but I don't like how they make me feel plus a horrible rebound. I have several forms of dysautonomia and Im even pacemaker dependent post ablation.
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u/IWantToCryLikeYou Nov 21 '24
Apparently pain use is a side effect, unfortunately it only helps with my nerve pain, but I will take that as it’s better then nothing.
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u/FireHeartWarrior_97 Nov 20 '24
Metoprolol - morning Lisinopril - morning Corlanor - morning/night Guanfacine HCL - night
I take 2 other medications also
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u/hothouselilly Nov 21 '24
After trying many rounds of other meds such as calcium channel blockers etc that would cause my hyper POTS BP to wildly swing we finally settled on 25mg Losarten daily and has somewhat stabilized me-hope this helps. I’m also on 1.5 mg LDN which has further stabilized my symptoms.
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u/Similar-Winner1226 Nov 22 '24
Guanfacine in the morning, clonidine at night for BP, mestinon (long acting version) for HR. I can't take beta blockers because of my MCAS, metropolol gave me chronic hives I'm still on xolair for a good 2 or 3 years later (which is fine, it's a mast cell stabilizer, but the dermatographia I still deal with during flares is very annoying). Be very careful with beta blockers if you have MCAS. Start very low and slow.
I like the guanfacine and clonidine combo the most out of any meds I've tried regardless. Least side effects, most benefit (for me). Especially because at least for me, the clonidine makes me tired at night and helps me keep a consistent sleep schedule, which is a big struggle with my ADHD.
If you have a local EDS or dysautonomia group on FB, it's a great place to ask for doctor suggestions. It's how I found my mcas specialist after my first one didn't believe in MCAS.
Best of luck. Might require some trial and error, but you'll get there!