POTS - postural orthostatic tachycardia syndrome

Posted by julianned @julianned, Sep 6, 2019

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!

Looking for resources on how to make life style changes to better manage POTS, specifically exercise programs.

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Has anyone been to the Jacksonville hospital for autonomic testing for Postural Orthostatic Tachycardia Syndrome? And if so, what was your experience like, how long were you there, etc.
I am looking for a second opinion; my cardio electrophysiologist had me do a Tilt Table Test, which did not show POTS but I was taking a beta blocker at the time, which I am sure skewed the results.
I also suspect hyper-mobility/Ehlers-Danlos Syndrome and Gastroparesis
TIA

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@jessicadawn

Has anyone been to the Jacksonville hospital for autonomic testing for Postural Orthostatic Tachycardia Syndrome? And if so, what was your experience like, how long were you there, etc.
I am looking for a second opinion; my cardio electrophysiologist had me do a Tilt Table Test, which did not show POTS but I was taking a beta blocker at the time, which I am sure skewed the results.
I also suspect hyper-mobility/Ehlers-Danlos Syndrome and Gastroparesis
TIA

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Hello, @jessicadawn, and welcome to Mayo Clinic Connect. You may note I've moved your message here to this existing discussion on postural orthostatic tachycardia syndrome (POTS) so that you can connect with others talking about this syndrome.Hoping that members who have shared here like @flick027 @kfletch @jobby99 @c130 @julianned will return and share their own experiences from when they (or a loved one) were trying to confirm whether they had POTS and also whether they may have been seen at Mayo Clinic's campus in Jacksonville, Florida. @kariulrich also may have some thoughts for you.

Here are a couple of the past discussions on Connect related to POTS that may interest you :
– Awkward/rapid/skipping heartbeat http://mayocl.in/2nwaKK0
– Postural Orthostatic Tachycardia Syndrome (POTS) http://mayocl.in/2nkZe3y

Also, here is a Mayo Clinic Q&A on this syndrome you may be interested in reading https://www.mayoclinic.org/medical-professionals/endocrinology/news/postural-orthostatic-tachycardia-syndrome-and-chronic-fatigue-in-adolescents/mac-20430815.

What did your doctor say about the concern regarding the beta blocker potentially skewing your test results, jessicadawn?

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I would recommend to retake the test without meds. It will be hard but results are more accurate. That's what I was told when doing my TTT

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Thank you for sharing your information. I believe Metoprolol was causing my Tachycardia. I slowly discontinued the Metoprolol, the less Metoprolol I took the less Tachycardia I experienced. I haven't had Tachycardia since stopping the Metoprolol. I currently take a low dose of Micardis.

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@c130

Thank you for sharing your information. I believe Metoprolol was causing my Tachycardia. I slowly discontinued the Metoprolol, the less Metoprolol I took the less Tachycardia I experienced. I haven't had Tachycardia since stopping the Metoprolol. I currently take a low dose of Micardis.

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I stopped slowly 2 weeks ago.no more tight chest or out of breath. Stated taking 500mg of Hawthorne Berry twice a day and my afib is already 80% better after only 1 1/2 weeks. Haven't felt this good in 2 years when I 1st got on the Metropolol. And 1 lost about 10 lbs of fluid caused by the pill too!!

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@kanaazpereira

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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Hi Kanaaz, My appologies for the very long delay. I actually ended up repeating the tilt test and in fact got abnormal results. Ultimately I was diagnosed with POTS. I have also had a 24 hour blood pressure monitor, which did detect some abnormal peaks and valleys — which they said could possibly cause syncope episodes. However i am still waiting to have my appointment with a local specialist. I just finally got on the books today for 2 weeks from now. I am taking amitriptaline and propranolol, which I feel has helped me, however I am starting to experience tremmors in my hands and mouth again. My pcp suggested possibly raising the dose of propranolol but I am very lethargic and worry that this will cause more lethargy. I am not even 30 and I do worry that things will get worse as I age.

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Curious if anyone has been diagnosed with POTS, symptom background, and how the doctor came to the diagnosis.

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@lpate

Curious if anyone has been diagnosed with POTS, symptom background, and how the doctor came to the diagnosis.

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@lpate, I moved your question about POTS and how people were diagnosed to this existing discussion where @julianned asked similar questions and was diagnosed with POTS. Click VIEW & REPLY to learn more from her and fellow members @kfletch @kariulrich @flick027 @jessicadawn @c130 @sassifb @suzanne2019 and others.

Lpate, keep us posted on what you find out after your consult with the cardiologist.

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@colleenyoung

@lpate, I moved your question about POTS and how people were diagnosed to this existing discussion where @julianned asked similar questions and was diagnosed with POTS. Click VIEW & REPLY to learn more from her and fellow members @kfletch @kariulrich @flick027 @jessicadawn @c130 @sassifb @suzanne2019 and others.

Lpate, keep us posted on what you find out after your consult with the cardiologist.

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My granddaughter was diagnosed with POTS by a cardiologist and a team at Nemours Children's Hospital in Orlando. As she moved to adulthood, she spent two weeks up at Mayo Rochester and they put her on a life path for her future. She will be entering college this year. It was a team approach, but the Cardiologist and a battery of testing (tilt table/etc.) helped with the diagnosis.

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My GI recently prescribed propranolol for "butterfly" sensations in my stomach, along with clenching and tightening. He feels it's due to anxiety, I think it has more to do with omeprazole which I've been on for 3 years. Has anyone taken it and does it help with any strange feelings in the digestive tract? Thanks so much.

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@jenn54

My GI recently prescribed propranolol for "butterfly" sensations in my stomach, along with clenching and tightening. He feels it's due to anxiety, I think it has more to do with omeprazole which I've been on for 3 years. Has anyone taken it and does it help with any strange feelings in the digestive tract? Thanks so much.

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Hi @jenn54 and welcome. As you will see, I have added your discussion to an ongoing discussion with similar symptoms and medications taken. While I am not suggesting that POTS is your diagnosis, there are many members in this discussion that can speak to the effectiveness of the medication propranolol. When did you start having the "butterfly" sensations in your stomach, along with clenching and tightening?

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