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Lunarr

674d

Has anyone been treated by the Mayo Clinic or a similar medical center (particularly for dysautonomia like POTS, orthostatic hypotension, etc)? I'm at my wits end after yet another failed specialist appointment that ended with them saying they can't help me because whatever is wrong with me isn't in their area, but they don't know what area it is in. Getting bounced back to my primary over and over again feels like a waste of time and money so I was wondering if a care team of specialists like Mayo can offer might be a better approach and what everyone's thoughts were on that?

Top reply
    • Officialishness

      669d

      @Lunarr I would definitely try to find an EP, that was my biggest help. Beta blockers aren’t for everyone but are a common treatment for POTS along with sodium supplementation and hydration. I am on a very very low dose of metoprolol and it’s changed my life. Hopefully your PCP can refer you to an EP - unfortunately most cardiologists don’t handle POTS but an EP should be able to help!

    • Officialishness

      674d

      For me I found a neuro who knows/works wirh POTS; I also had an cardiac electrophysiologist who was able to help a lot too. Ask the doctors you have met to refer you to someone they know who knows more about POTS. Mayo Clinic is great too I hear if you get the opportunity to work with them. In my experience I mostly use my doctors for beta blockers. I decided to do physical therapy on my own, started sodium supplements and got a rolliator on my own as well - unfortunately there is only so much doctors can do for POTS if it is independent of other issues (other chronic conditions; SVTs; AFIB; enlargements) so it may honestly be best to find someone who can give medication as needed and do your own treatments if possible :( It’s unfortunate but is most realistic especially if you’ve spent lots of money on doctors already. For beta blockers I recommend an EP because they have some background with POTS and should be comfortable prescribing.

      • Lunarr

        674d

        @Officialishness Thank you!! I've never seen an EP so that might be helpful. I'm on midodrine for symptom management right now but I've heard of beta blockers. Not sure if they'd be right for me but I'm willing to try anything at this point. I've never been diagnosed with anything other than "dysautonomia, unspecified" so I've been shopping around hoping someone can find something more specific than that. You're so right about us needing to find and do our own treatments, its exhausting 😅

        • Officialishness

          669d

          @Lunarr I would definitely try to find an EP, that was my biggest help. Beta blockers aren’t for everyone but are a common treatment for POTS along with sodium supplementation and hydration. I am on a very very low dose of metoprolol and it’s changed my life. Hopefully your PCP can refer you to an EP - unfortunately most cardiologists don’t handle POTS but an EP should be able to help!

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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