So my heart rate problem has finally been solved. I think… From the tests we did (2D Echo and ECG), there seemed to be nothing wrong with my heart. So my doctors looked into other causes of my rapid heart rate. The most obvious reason was my BiPap settings. It might not be adequate for me already and I’m not able to expel carbon dioxide enough. The build up of carbon dioxide can lead to increased heart rates.
The doctors had us adjust the settings. After some tweaking, we finally got a setting that seemed to work. The downside was I got soe gas and nausea for the next few days. But I slept better and my heart rate slowed down.
On hindsight and upon asking other Pompe patients, it was more obvious that it was the machine settings.
I’ve been getting headaches when I wake up. I would also wake up in the middle of the night and find myself breathing rapidly. It also came to a point that when I would wake up in the middle of the night I would have to sit up for a few minutes to feel better.
Other patients felt this and all of them said that it was caused by BiPap settings that needed to be adjusted.
So I hope that’s all there is to it. Wish me luck.