When I am in a crash yet have to struggle to the toilet or something I begin to feel very dizzy and ill. I have attacks of POTS where my heart rate can go to 150 sitting up so my husband used an arm blood pressure machine to see if that was the problem. We found that my systolic kept going up while my diastolic was going down until it reached about 165/52. This has happened a couple of times now. I have treated high blood pressure since early 40s (family genetics!) and it is usually about 135/75. This is temporary and occasional and feels connected to my ME so I don't think I have any of the diseases they say cause it online.
In our family on the CPET, in addition to low oxygen uptake during exercise, we also have a wide pulse pressure. Our youngest daughter, now 13 years old, had a CPET yesterday. Her blood pressure went from 104 over 65 while resting to 124 over 40 while exercising. We know our ME is related to mitochondrial disease. On really bad days, when I walk on the treadmill, I will only last a few minutes and I feel weak and shaky. I look at the heart rate at those moments and it's always very low and moving down as I can barely walk at a pace of 2 miles per hour or less (while on good days I walk easily at 3.6 mph). For me, on those bad days it's just best not to push it and go back to bed before something in my body shuts down from lack of blood circulating and complete low mito energy.
That's interesting. So sorry your 13 year old is sick. I hope there are treatments soon so she can have some childhood. It would be good if someone out there was looking at this sort of thing. It must give some insight into what is happening to us.
