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At my doctors appt today, my PCP, my heart rate was 103 in his office. It has not been well controlled by my med for the last few weeks. He thought about changing my beta blocker to Atenolol, which I currently take Bystolic, but I was hesotant to try a different med. He then mentioned cardiomyapathy, which I had read some people on the dinet site have talked about in the past. I googled it on the computer and got some information, but does anyone here with POTS also have this cardiomyapathy? It sounds like prevention is the key, and that the overworking of the heart when it is experiencing frequent tachycardia damages the heart or causes some type of heart failure. Am I understanding this correctly? Any input someone has would be appreciated. I go back to the dr in 3 months, so I can always ask more about it then.

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Cardiomyopathy from Mayo

Here is a link to Mayo Clinic on Cardiomyopathy. My Cardiologist calls this "End Organ Damage," from uncontrolled high BP or HR. I personally know one person who has this from POTS. Hers is after 25+ years of uncontrollable, incredibly high BP with orthostasis.

I don't think (and I'm not sure anyone knows for sure) that cardiomyopathy will effect most POTS patients, this is what happens with the extreme cases. I think that POTS combined with a family history or another disorder may make things more complicated. We all end up with wear and tear on our bodies from life itself and bad habits, so there is just no knowing that POTS, by itself, would cause this. I also don't think that enough time has passed, or research done to know what the ultimate prognosis is for POTS and its various subtypes.

I don't know if this helps, but try not to worry---it will only make things worse, both mentally and physically! Learn as much as you can without worry and have the knowledge to care for yourself and ask the right questions. Just be prepared for the probability that your doc won't have the answers.

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I was intitially diagnosed with cardiomyopathy and my heart was only pumping half strength. This was right before my POTS diagnosis and for me I think it was caused by a combination of pregnancy, virus, and possibly my congenital heart defect. I don't think POTS was the cause. I thought maybe the other way around but not sure. Now I've regained my heart function and it's back to normal. Not sure if that's due to better HR control or not. I'm sure that had to help though. I'm so hesitant to change meds as well. I've taken atenolol almost 3 years and I'm concerned it may be causing some significant memory problems. I'm terrified of switching though bacause I may lose control of my HR again. It's such a hard decision. Good luck!!

Brye

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I was diagnosed with dilated cardiomyopathy of my left ventricle before I was diagnosed with POTS. I was in congestive heart failure at the same time, and had absolutely no energy. They put me on Coreg and Coumadin (since I also had atrial fib) and eventually my heart got better, but I still have problems with it. Currently I have a blood clot in my right atrium that we're treating. Have you have an echocardiogram? I would ask for that test, because it's one of the best to see what's really going on with your heart. Then they can treat whatever is going on appropriately and hopefully you'll feel better.

Good luck, and feel free to PM me if you have more questions. I think I got my dysautonomia diagnosis soon after my heart condition cleared up....

Cheers,

Jana

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  • 11 months later...

My dysautonomia dx was first (4/97; Mayo) but then I was dx with restrictive cardiomyopathy in 2/00. I primarily have symptoms of right heart failure now. In my case, the etiology and progression of my cardiac (and other systemic) damage is postulated to be due to chronic active EBV. Does anyone have a similar story? :/

Thanks in advance! XOXOX

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They use inappropriate sinus tachycardia as an example of where prolonged tachycardia did not seem to resulted in increased morbidity or cardiac damage in studies. I have no doubt that increased sympathetic reception in the heart increases our risk of cardiac mordibity but the best trick for that is exercise and a good diet.

My father had cardiomyopathy and a very highly respected cardiologist told me he frequently sees POTS in the families of his cardiomyopathy patients. He has however, very little exposure to the condition.

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