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MoonFairy

Updated 11mo ago

Looking for POTS medication advice

Have any meds for POTS actually helped you? I was prescribed midodrine, and mestinon. I stopped the mestinon early due to adverse effects. I went to high dose of midodrine 4x a day, but didn’t notice much of a difference, so I stopped taking it. My adhd med: Vyvance, helps significantly, especially with the fatigue, but not to the level that I’d it would. What do you guys take? Have they helped you?

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horseylov143

2y

ok so midodrine has not really helped me much, it just gave me an obscene amount of goosebumps all the time which was very strange? but metoprolol has literally changed my life- please look into it or ask your doctor!!! it really helps w my like heart related symptoms, i had really bad palpitations and like dizziness all the time and the fatigue when standing up
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horseylov143

2y

it’s not completely better, but it helps w my palpitations and my heart rate a lot
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horseylov143

2y

doesn’t help too much w the fatigue but definitely helps me feel more physically grounded
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fxrest.faxrie

2y

I'm on propranolol and that's helped me pretty well regulate my heart rate tbh. I certainly recommend that one.
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Nono5

2y

Most medications I’ve tried I couldn’t really tell if there was any improvement plus they would give me side effects so it was so hard to tell. I finally stopped all medications and wasn’t feel any worse … but now I’m taking a beta blocker and I see a difference (I’m no longer in tachycardia) and it doesn’t give me side effects.
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KayEDS

2y

Nope. I’m trying a new one now, 3 times a day. If this one doesn’t help my cardiologist said he’ll do more testing and whatnot. I’m so incredibly grateful to have an amazing doctor:)
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justkittenya

2y

Propranolol XR made a huge difference. I also get IV fluids three times per week.
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hazyeclipse

2y

Midodrine is amazing. Unfortunately it doesn't help much when my symptoms are abysmally bad but when they're mild to moderate it helps a lot. Like going from struggling to walk and bend and do light tasks to moving around with relative ease. Propranolol doesn't help much with my symptoms, it just helps keep my tachycardia from being quite as extreme. Caffeine is also helpful. I want to try mestonin though, because the goosebumps and light sensitivity midodrine causes is really unpleasant. What adverse affects did you have?
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MoonFairy

2y

I had bad muscle spasms with it. But it was only in high doses, but low doses didn’t help with anything
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hazyeclipse

2y

Oh and the other downside with midodrine is when I take it every day it loses effectiveness :/ so I need to find other options
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Lkbmotion

2y

Midodrine works really well for me, so I can't really speak to other medications. I was on Florinef for a little bit. While it made me feel worse, it's worked for a lot of people. It's meant to increase blood volume. Maybe talk to your doctor about it

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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