Fernfairy

You are helping me come up with great questions for my next appointment. My heart rate does go up when I stand greater than 40 beats, but it’s inconsistent when I’m up it bounces around. I also thought that to be diagnosed with POTS there had to be no orthostatic hypotension? Can you have both?

@SushiI am so happy to have found this board and you. Your successes give me hope! I wish you well.

Ahh..after replying to you separately I just figured out that the quote button lets you directly reply to a comment.

Hi Sushi. You’re the first person I’ve found with a similar situation - thank you for sharing your experience and suggestions! I was diagnosed after an echo with low ejection fraction and orthostatic hypotension via a tilt table test, and also paroxysmal tachycardia - but I’m not even sure exactly what that means yet. I‘m pretty scared about the heart failure issue and am feeling overwhelmed by all of it. I’m in Alaska so I feel lucky to have found a cardiologist who specializes in autonomic dysfunction but I’ve already been thinking that a second opinion out of state would probably be a good idea so I’ll look for an electrophysiologist. Thanks again!

Thank you Jyoti, I appreciate it!

I was recently diagnosed with autonomic dysfunction as a comorbidity to Ehlers-Danlos at 45. I’ve had symptoms of both for as long as I can remember but no one figured it out until recently. I was told by my cardiologist that because my autonomic dysfunction had gone on for so long without treatment I was now in beginning stage heart failure. My blood pressure has always been low but I’ve been experiencing significant orthostatic hypotension which is made much worse by the heart failure drug they put me on. I also have a resting heart rate around 50-55, which dropped down in the 40s with the med, although it does shoot up when I stand up. They put me on a very low dose of Entresto, but it lowered my blood pressure and heart rate too much and they had me stop until I can check in with the cardio next week. I’m just wondering if anyone has had a similar experience and found treatment that worked for them and were able to improve ejection fraction numbers and autonomic dysfunction? The cardio said that it’s possible if we get the autonomic dysfunction under control with some lifestyle changes in combination with medical therapy for the heart failure my heart may improve, but it seems like treatment options may be limited by my low blood pressure issue. Thank for any input!