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I have been reading off and on again how a lot of people here have Hyper POTS and kept wondering if my POTS was the “hyper” variety or not. My cardiologist never did a work up, just “knew” I’d fail a tilt table test, and started me on Florinef, salt, more water, etc. Of course, that all made me worse and I stopped going to her for my POTS issues.
I’ve been on Diamox for 9-10 months now, but still struggle with POTS symptoms. So, I researched Hyper POTS and then started asking my doctor about it, since the treatment protocols are so different than garden variety POTS. 😉
My doctor decided to do his own version of the TTT, checking BP and heartrate and doing the blood draws for catecholamines while laying down and then after standing for 10 minutes. Of course my HR went up over 30 pts between laying and standing (we already KNEW that would happen) and when the labs came back, voila, my Norepinepherine was our of normal range high when standing (it a little more than doubled from laying to standing). So, yes, I do have Hyper POTS.
My question is, to those of you with Hyper POTS, what meds have you found that help the most? I have been subjected to the brainwashing that it is all about low blood volume for so long now, this opens up a whole new way of thinking. I am on Diamox, but it doesn’t seem to quite cover all my POTS problems. I am also taking a med right now to try to turn off my ovaries/hormones, since they seem to add further fuel to the fire of instability and crazy endocrinology for me. I also see that alpha blockers are used… anyone else use these? ( My cardio of course tried me on beta blockers when I was first DX with POTS and that was a huge fail… made me pass out.) Also see that Welbutrin is used for Hyper POTS. Anyone find that helpful?
Thanks!
Wish I could chime in. Nobody here seems capable of doing that blood draw. I believe I have HPOTS too.
My question is, to those of you with Hyper POTS, what meds have you found that help the most? I have been subjected to the brainwashing that it is all about low blood volume for so long now, this opens up a whole new way of thinking. I am on Diamox, but it doesn’t seem to quite cover all my POTS problems. I am also taking a med right now to try to turn off my ovaries/hormones, since they seem to add further fuel to the fire of instability and crazy endocrinology for me. I also see that alpha blockers are used… anyone else use these? ( My cardio of course tried me on beta blockers when I was first DX with POTS and that was a huge fail… made me pass out.) Also see that Welbutrin is used for Hyper POTS. Anyone find that helpful?
Hi there.
Good to see your doctor did this test.Off the top of my head, one drug I heard of for hyper POTS is called: CLONIDINE
Have you tried it? Maybe your doctor could consider prescribing it?
It’s apparently useful for POTS because it dampens down hyper-adrenergic and autonomic activity.
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