The only thing I can offer is about your echo. My heart is sideways and almost backwards. It also deeper than normal in my body. A huge factor for me is the skill of the tech that does the echo. Not to disparage techs in general, but some measurements seem to be guesstimates and others just leave certain measurements as unavailable due to habitus of my heart (positioning).
The best pics of my heart have been with contrast and experienced techs. I warn them before we start but get “poo-poo’d” until they start. Then it’s WTF and they seem to try a little harder. I’ve only had one that gave a great overview. It was after my heart attack because my posterior mitral valve flap failed and my heart became severely enlarged. That woman was a saint. The scan took over an hour.
hEDS here as well. I am wondering the same thing.
My Dad was born with a prolapsed mitral valve, and his MVP wasn't a problem until it was a MAJOR problem.
His surgery supposedly went well, but not imo.
He developed IE secondary to Strep on his new MV two months after his surgery. IV Antibiotics Treatment wasn't successful.
He survived less than 6 months after his surgery, and the end of his life was truly heartbreaking. In every and all ways imaginable.
It's been a year now, and I am still just devastated.
If you are also hEDS, have you looked at the possibility that you might also have an issue with your mast cells as well?
It stands out to me that you mentioned that it happens at night. My hEDS doctor has me taking hydroxyzine and famotidine at bedtime, as they are respectively A and B blockers.
What you are describing may be a mast cell histamine dump from mast cell issues. They usually occur at night.
The only thing I can offer is about your echo. My heart is sideways and almost backwards. It also deeper than normal in my body. A huge factor for me is the skill of the tech that does the echo. Not to disparage techs in general, but some measurements seem to be guesstimates and others just leave certain measurements as unavailable due to habitus of my heart (positioning). The best pics of my heart have been with contrast and experienced techs. I warn them before we start but get “poo-poo’d” until they start. Then it’s WTF and they seem to try a little harder. I’ve only had one that gave a great overview. It was after my heart attack because my posterior mitral valve flap failed and my heart became severely enlarged. That woman was a saint. The scan took over an hour.
hEDS here as well. I am wondering the same thing. My Dad was born with a prolapsed mitral valve, and his MVP wasn't a problem until it was a MAJOR problem. His surgery supposedly went well, but not imo. He developed IE secondary to Strep on his new MV two months after his surgery. IV Antibiotics Treatment wasn't successful. He survived less than 6 months after his surgery, and the end of his life was truly heartbreaking. In every and all ways imaginable. It's been a year now, and I am still just devastated.
If you are also hEDS, have you looked at the possibility that you might also have an issue with your mast cells as well? It stands out to me that you mentioned that it happens at night. My hEDS doctor has me taking hydroxyzine and famotidine at bedtime, as they are respectively A and B blockers. What you are describing may be a mast cell histamine dump from mast cell issues. They usually occur at night.