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Got Heart Failure From Pots - Anybody With Info?


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Carmen,

Gosh, you are so kind to give me that information! I will look into getting with him on Monday. Looks like you have a very heavy and challenging load yourself from your sig, so thanks and best wishes and luck to you.

My immunologist contacted me yesterday afternoon to tell me that I had a new emergency; my natural killer cells have somehow given out and my body is crushed with viral infections. Now this has to take priority, even over not being able to sleep (can't breath lying down) or even syncopes and high bp.

She did tell me that basically low blood volume confuses the balance between the upper and lower left chambers of the heart as the heart can't fill up enough and the beating because unsyncronized in the two chambers, leading to some pulmonary damage, leading to pressure that damages the left ventricular, etc.

I am asking her to put this in writing so I can post it for y'all in the future.

Remember that it probably took over 20 years for me to get the ventricular failure.

Agreed - time for some long term studies on POTS and what it does to the rest of our bodies.

Thanks again everybody.

Elegiamore

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  • 1 year later...

Hey sweetie,

I know this is an old post but I had to write! This is so rare! I developed dysautonomia /IST/OI etc. First, then developed CHF (cardiomyopathy). My EF is improved now so this is so weird! I am sad your Journey is of rare presentation too, but hey at least we aren't alone, hey? *hugs*

I have underlying pathophysiology of chronic active EBV & also CFS/CFIDS so I can relate to your situation. I would hypothesize that your CHF is not secondary to POTS but rather the same culprit responsible for your CFS remaining active and/or reactivating & causing the further damage. This happened to me.

Please let us know how you're doing now.

Much love & be well sweetie!

Xoxox

~do

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Hey Dys One & Ele-

I am so sorry for how far things have progressed for both of you. So many of us have intermittent bad echoes. Can't help if we're all heading down a similar path. In re-reading this old post, I was reminded of a doc I stumbled upon in Michigan, who has a theory and treatment, for folks with heart involvement in CFS. His name is Dr. A. Martin Lerner. Here's a link to his site:

http://www.treatmentcenterforcfs.com/personal_statement/index.html

Prayers and good thoughts headed to BOTH of you-

Julie

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In every other condition where there is increased sympathetic drive to the heart ther eis also increased cardiac morbidity. In inappropriate sinus tachycardia however there was no evidence of cardiac damage after prolonged tachycardia (these guys have been studied the longest).

ben levine talks about this area of the heart in his work. He thinks POTs patients have small hearts LOL.

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  • 5 months later...

Wondering how you are Elegiamore? I tried sending a PM to you but, I haven't heard back and not sure you got it. I'm hoping that you are still hanging in there. Last time I spoke with you, things were not looking too good. Hoping for a peaceful heart and love to surround you.

Issie

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Any type of persistent and prolonged tachycardia will lead to an increase in heart size (your heart is a muscle and responds as such) and can lead to cardiomyopathy. Cardiomyopathy in turn often leads to heart failure and many other problems such as dysrhythmias. There are many articles and have been many studies on tachycardia induced cardiomyopathy, and the association is not casual.

You are definitely in a tough spot :(. If it is possible to get your heart rate consistently under control (eliminate the tachycardia as much as possible), it would help you at least not progress with the heart failure. I know that does not help your current fluid balance issue, but may prevent it from becoming even worse. What is your EF (ejection fraction) if you dont mind me asking? You can find it in your echo report--it would be listed as a %.

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