POTS - postural orthostatic tachycardia syndrome

Hi @flick027 and @kfletch,

It’s been a while since I’ve heard from you – I hope you’re doing well? I was also wondering if you had any update to share about the POTS diagnosis? I’d sincerely to hear back from you.

Hi @jobby99,

How are you? Do you still find the need to stay in an upright position to ease your POTS symptoms?

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

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

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?

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

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.

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!!

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.

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