POTS - postural orthostatic tachycardia syndrome

Posted by julianned @julianned, Fri, Sep 6 5:32pm

Hi all, is anyone familiar with POTS and if so how has your experience been diagnosing and treating it?

I was diagnosed with neurocardiogenic syncope several years ago and treated with propranolol. This worked miraculously for me until about 8 months ago when I started having fatigue, dizziness, gastrointestinal issues, pain, and vision issues. I saw a neurologist today who specializes in autonomic conditions, and she said that it sounded like POTS. I had a tilt test recently which showed a few abnormalities, but the test was performed while I was still taking propranolol. I was told that this may have skewed the results.

Any comments are much appreciated!

Liked by Leonard

Hi @julianned, I moved your message to the Heart Rhythm Conditions group where other member like @kariulrich, @neeci, @mojoearle, @bearylynn, @dogmamat, @brie87144, @jenniferjjjj, @widman, and others are talking about POTS (postural orthostatic tachycardia syndrome).

You may be interested in reading these past discussions on Connect too:
– Managing POTS (Postural Orthostatic Tachycardia Syndrome) https://connect.mayoclinic.org/discussion/managing-pots-postural-orthostatic-tachycardia-syndrome
– Diagnosed with dysautonomia. Looking for treatment options http://mayocl.in/2bKzAwa
– Awkward/rapid/skipping heartbeat http://mayocl.in/2nwaKK0
– Postural Orthostatic Tachycardia Syndrome (POTS) http://mayocl.in/2nkZe3y

I would also encourage you to read this story on Connect:
Learning to Live Well with POTS Brightens Daily Life for Christine Esposito: https://sharing.mayoclinic.org/2016/12/15/learning-to-live-well-with-pots-brightens-daily-life-for-christine-esposito/

Julian, what are the next steps for you? Will you have to discontinue propranolol and repeat the tests?

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I have been diagnosed with heart failure. Has anyone tried Entresto for this condition. I am supposed to be taking Tykosyn but find it too expensive. Is there a generic alternative for Tykosyn.

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The generic for Tikosyn is Dofetilide. Different insurances treat this differently. "Heart failure" is well written up with many things you can do to have better outcomes. Research it. These are not medications but daily activities. I've seen good books for the public, but I'm sorry I don't have the names of them. Good luck!

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Hi @julianned,

I hope you’re doing well; I wanted to follow up, and was wondering if you are able to share whether you were diagnosed with POTS?

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