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I am not sure if I am on the right discussion, but hoping for some help from anyone. One neurologist says POTS. Next one said you absolutely do not have POTS. Doctor at Vanderbilt said maybe a minor case, but is not what is causing my issues. Had heart ablation in 2013 and the developed bilateral PEs a few months later. I swim two times a week and do exercises in floor twice a week, but when trying to walk I get so out of breath that I sometimes just go down right there. No dizziness. No feeling of passing out. No issues unless I am on my feet. The 50 steps to the pool water is close to impossible, while the laps I swim are like normal exercise. All heart and lung tests are all good. MAYO turned me down too. Anybody have any suggestions ? Thanks. Glenna

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Replies to "I am not sure if I am on the right discussion, but hoping for some help..."

I don’t know if my comment will help but because of your symptoms description, I may have a clue for you. I was born with a birth defect in my heart, a 1 in a million defect. After much research, it wasn’t until 2021 that I discovered I had WPW, Wolff, Parkinson, White Syndrome. I had lived 77 years with all the heart problems I have, not realizing it was WPW causing everything, including 3 heart attacks. Does this description sound familiar? I call them Spontaneous Blackouts! One second you’re standing, the next second you’re on the floor/ground wondering what you might have injured from the fall. There’s no warning at all with very little knowledge of what just happened. There’s no dizziness, lightheadedness, like fainting causes, just complete and instant unconsciousness. With that knowledge in hand and a pcp willing to help me prove my case of WPW, I realized I was seeing the wrong heart specialist. I needed to be seen by an Electrophysiologist Cardiologist, a specialist in Heart Rhythm issues. My heart is now being monitored 24/7 by an expensive loop heart recorder emplaned in my chest to track down the bad heart cells causing my problems, so they can be destroyed. You’ve had a ablation but that may not have solved your problem because my heart defect is actually a short circuit loop of cells between the SA Node and the AV Node which an Electo Cardiologist could find. Since you didn’t mention what type of doctor did it, I just wanted to tell you of my experience with Blackouts. Good luck.

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