That sounds horrible Pistol! I'm so sorry!
I notice a huge change in my orthostatic symptoms depending on how my shunt is functioning (it is supposed to divert CSF to my abdomen if the pressure in my head exceeds a set point). When my shunt is over draining, I get WAY more POTSy, i theorize because of the excess plazma volume needed to keep up with increased CSF production, makes me more dehydrated. When it is under draining and my pressure is too high, my numbers are better, but I feel worse in general because the high pressure gives me terrible extra fatigue and nausea. I am going to see my eye specialist who manages my care for that this week to see if a shunt problem is causing this flare up (though I desperately hope not, as that would mean another brain surgery, minor though it is, still a set back for recovery).
On top of this, I was diagnosed with Lupus early this year. All of my conditions can cause/exasserbate the POTS. It is increadibly hard to ballance. Of all my issues though, POTS is by far the most debilitating and has the highest negative impact on my life. The fact that it is so common, and yet so few people know about it, let alone understand the devistation it can cause, is outrageous. You are all amazingly strong. Thank you for your kindness. Most doctors are overwhelmed by me. But isolation can cause even more suffering than this disorder in and of itself. You help me feel community.