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flick027
@flick027

Posts: 1
Joined: Mar 24, 2017

Managing POTS (Postural Orthostatic Tachycardia Syndrome)

Posted by @flick027, Mar 23, 2017

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

Liked by Pete Getz

REPLY

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.

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?

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:)

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

@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.

Liked by c130

Do you have EDS?

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