A simple at home test seems to show many of my symptoms are manifestations of orthostatic intolerance

I have tried the following:

1. Spend almost all of my time during the day in a beach bed with raised back rest. In terms of horizontality and orthostatic stress, this is about halfway between sitting and lying on a bed (maybe a bit closer to lying in a bed).

2. Spend half of the time in bed doing nothing, the other half sitting. A variant of this is taking very frequent but shorter breaks, with less total rest time.

3. Spend almost all of my time sitting.

Number 3 seems to result in more symptoms at the end of the day, difficulty calming down enough to sleep, and a large drop in exercise tolerance.

Number 2 seems to give the best results in terms of symptoms.

Number 1 is better than 3 in terms of symptoms but maybe not as good as 2, and maybe gives better results in terms of exercise tolerance.

So it seems that the key problem might be an inability to properly manage orthostatic stress, and that this problem is neither clear cut POTS, nor orthostatic hypotension, but its own distinct thing.

 

I was aware of the significant & non-immediate consequences of "overdoing it" for some time. Issues like later becoming too wired to fall asleep or stay asleep, digestive problems, orthostatic hypotension, breathing/heart rate/vision etc. etc. but how much of this was triggered by just being upright was something that really became clear to me during the pandemic.

I thought I had a handle on "safe" levels of exertion, once per day - e.g. short food shopping trip, or a few hours working in an office a couple of times a week etc. But when I was forced to spend all day, every day at home (often reclined), I realised my more general energy levels and symptoms improved markedly. Equally having no pressure to get up and move about in the morning (eating, showering etc.) also made a big difference as the tolerance is so much poorer in AM.

Unfortunately for most with these sorts of OI issues being horizontal all the time feels great but tends to lead to even further reduced capacity when upright.

 

I tried some vestibular rehab exercises after realising that a lot of my 'autonomic' symptoms come on when I turn my head and change position and have a lot going on visually, e.g. when I'm in a shop and there is a lot to look at and I am turning my head a lot and bending over.

As I was doing them, I got waves of immediate symptoms, including rapid fatigue and even some drowsiness, which is less of an issue for me than fatigue and other symptoms.

These were the movements, obviously do at your own risk and consult a professional first and so on and so forth...if you can get hold of one. I have no idea how much PEM it could cause. Proceed with caution.

Also not sure what it 'means' because so many conditions can cause or be a result of vestibular issues.

https://www.umc.edu/Healthcare/ENT/Patient-Handouts/Adult/Otology/Vestibular_Exercises.html