POTS - postural orthostatic tachycardia syndrome

Hello @kanaazpereira,
I am 39 years old and am a teacher coach/ literacy intervention specialist at the elementary level. I am currently not able to work due to POTS and all of the symptoms that come with it:) I also have a complete heart block and heart failure due to right-sided pacing. While seeing my electrophysiologist five years ago, he suspected I had POTS, but I wasn't actually diagnosed until April 2016. I had begun to experience worsening symptoms and had passed out

several times so my heart doctors referred me to the Mayo Clinic and Dr. Jeremy Cutsforth-Gregory to find out for sure. I have had my diagnosis for almost a year and have unfortunately become more ill. I started with taking fludrocortisone, increasing sodium and water, wearing a stomach compression band and thigh-high compression(when I could tolerate it) and doing positional maneuvers to help with blood pressure. In June I was also put on a beta- blocker to help with Tachycardia. I was not able to exercise due to constant pre-syncope. I had two more full syncope episodes, one while on a solo trip across the state of Washington and another where I ended up falling down some stairs. Those resulted in my need to stop working and focus on getting better. My cardiologist recommended cardiac rehabilitation because of the exercise protocol and being closely monitored and I took another trip to the Mayo Clinic in January. Due to the exercise at cardiac rehab, I have pushed and am able to tolerate approximately 45 minutes(split in two or three sessions) a day without my heart racing. I have also learned to take my daily activities and split them up, doing them sitting down and slower than I normally would. I sit down in the shower and while getting ready for the day. I delegate harder house chores to my teenage children to conserve energy. I drink H2O Oral Rehydration (these are kind of expensive, but the taste is better and they have worked for me. They can be purchased on Amazon) packets when I know I'm low on fluids, this has been a great find! Although I have to watch it because too much results in fluid over-load on my heart. I'm still learning what I can do, but I do finally see a little improvement:)

Welcome to Connect, @flick027, @kfletch,

What a great question, and insightful suggestions too. You may be interested in connecting with @neeci, @mojoearle, @bearylynn, @applegeek, @morgandickson, @jenniferjjjj, @widman, and others in these discussions:

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

@dogmamat, @brie87144, do you have any suggestions or tips about living with POTS?

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/

@flick027, @kfletch, could you share a bit more about yourselves? What lifestyle changes did you have to make; what helped?

There are some suggestions on the Dysautonomia international web site for exercise and lifestyle. I follow them on Facebook as well. For exercise, I went to cardiac rehabilitation (I also have heart failure in addition to POTS) and the exercise protocol has begun to help with some of my POTS symptoms.

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.