It took an unnecessarily long time to be diagnosed with adrenergic POTS. It shouldn’t, any doctor can do it. This is such a damn easy thing to check for when a patient complaining of chronic fatigue walks into a clinic that every doctor should know about it. In my case I was also complaining of breathlessness and dizziness when standing, a dead give away.
All it takes is any regular old blood pressure monitor. Measure the heart rate and blood pressure while supine, then a few times while standing over a period of 5-10 minutes. (If you wanted to do it super-seriously you’d follow the instructions for the NASA 10-minute lean test, which is what the doctor who finally diagnosed me did in her clinic. )
Any doctor could’ve done it. But I had to learn about it and do it myself first. Then I would start asking for it to be tested, but they always did it wrong: having the assistant do it, but they all only ever take one reading pretty quickly after getting up. I could never press hard because just getting to the doctor was tough enough, then you’ve already been made to feel small and crazy, and so your confidence in pressing back and asking for things to be done a certain way is low. (This weird trend where a nurse or PA takes one measurement at one point after standing up persisted even in hospital settings, except for one time when it was done properly by one person.)
Roughly every week or two for the first 6-months or so I would go as far as doing a full test, where I lay down for a couple of minutes, take two supine measurements with the blood pressure monitor, then stand for up to 10 minutes taking a series of measurements.
After a while testing in this way became pretty burdensome. You’re having hard enough trouble standing as it is, and when you do you use up this budget that you now can’t use for the rest of the day. So I would do it less frequently. I would monitor my POTS using a pulse oximeter and randomly I would just snap a picture for the record.
During the crash that started late September it became impossible most days to stand for more than a minute or two at a time. So I didn’t record much during this period. (The picture above is one from this period in the ER.)
I’d never done anything useful with this data. It’s not perfect, the interval isn’t regular, the time isn’t regular, etc. But I could feel there was a trend, I could see it week to week in the changing results. And sure enough when I just plotted it there was a clear trend.
There is a clear trend before and after the IVIG. You can see some of the really high results I was getting in October/November when things were going very badly. I’m still surprised by how much variability I can have day to day, or even within a day. But improvement is obvious.
I’ve recently started gathering data a bit more frequently again, because it feels like my recovery has plateaued, so I’ll be interested to see whether that shows up in my orthostatic measurements.