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!

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

Colleen Young, Connect Director | @colleenyoung | Sep 7, 2019

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?

basslakebabe19 | @basslakebabe19 | Sep 8, 2019

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.

soph | @soph | Sep 8, 2019

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!

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Dec 11, 2019

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?

flick027 | @flick027 | Dec 16, 2019

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

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Dec 16, 2019

In reply to @jobby99 "Cardiac rehab is best treatment for me in addition to staying upright throughout the day when..." + (show)

Hi @jobby99,

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

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Dec 16, 2019

In reply to @kfletch "There are some suggestions on the Dysautonomia international web site for exercise and lifestyle. I follow..." + (show)

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.

c130 | @c130 | Dec 16, 2019

In reply to @flick027 "Looking for resources on how to make life style changes to better manage POTS, specifically exercise..." + (show)

Do you have EDS?

jobby99 | @jobby99 | Dec 16, 2019

In reply to @kfletch "Hello @kanaazpereira, I am 39 years old and am a teacher coach/ literacy intervention specialist at..." + (show)

@kfletch

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:)

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Cardiac rehab is best treatment for me in addition to staying upright throughout the day when inactive.

Kari Ulrich, Alumna Mentor | @kariulrich | Dec 16, 2019

In reply to @flick027 "Looking for resources on how to make life style changes to better manage POTS, specifically exercise..." + (show)

@flick027 I recommend cardiac rehab also. One website that has been very helpful for me is: http://www.dysautonomiainternational.org Hope this helps!

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