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POTS - postural orthostatic tachycardia syndrome

Heart Rhythm Conditions | Last Active: Oct 12, 2022 | Replies (46)
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@colleenyoung

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?

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Replies to "Hi @julianned, I moved your message to the Heart Rhythm Conditions group where other member like..."
marinasinyard | @marinasinyard | Jan 1, 2021

Hello
My daughter was diagnosed with POTS at 21. I would like to reach out and ask if anyone has experience with the work of Dr. Deborah Zelinsky at the Mind Eye Institute outside of Chicago? They have used neruo-retinal imagining/glasses with success in eliminating the dysautonomia.
Thank you and all the best,
Marina

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teddi | @teddi | Sep 25, 2022

I have been diagnosed with POTS for several years now. Took a while for doctors to agree that what I suspected was actually correct.
Everything I do is at aerobic exercise level, and if I really work hard the heart rate went dangerously high.
My cardiologist prescribed Propafenone. It helped bring down my heart rate. And increased dosage is helping more.
My gait stability is low. I use a cane. I have stools all over the house so I can sit as much as possible.
I wear yoga leggings to provide compression all the time.
I am not shy about using salt.
The only place I can walk normally is in the pool. That’s my preferred choice of exercise.
It’s frustrating that I can’t do all that I want to do but I have learned to pace myself.
Perhaps this is as good as it gets. I am not on any medication for the Crohns. The chemotherapy strength drugs aren’t tolerated. However the Crohns appears to be mostly in remission. Gas and irregular bowel movements come and go but are tolerated. I am fatigued easily.
Is anyone living with this combo? Have you found a way to increase your quality of life?
I find the discussion about vitamins interesting. I have deficient Vitamin D level. Am on prescribed Vitamin D. Perhaps that explains the inner tremors I am experiencing.

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