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Lunarr

Updated 10mo ago

Has anyone been treated by Mayo Clinic for dysautonomia?

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?

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Officialishness

2y

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.
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Lunarr

2y

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 😅

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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