Whacky BP now

[Megscd]

EP informed me last week that I have POTS based on a quick poor man’s TTT and my symptoms (plus reading results of YEARS of Holter monitors, ER visits, and EPS/ablation for PSVT), but he also scheduled an actual TTT for tomorrow. He also wrote for midodrine, salt tablets, and 2-3 L of water per day. I hardly ever take my BP because when it is taken it’s always fine, but I’m unreasonably anxious about the TTT and have been randomly taking my BP (I’m well acquainted with what my HR does!). My BP when measured at dr offices is always around 115/70 give or take, and indeed it’s that way if I’m sitting around. However, last night I laid still for 10 min and then stood up to see what would happen. After 2 min HR was crawling on both sides of 120, from resting 81, which is actually pretty unreactive for me, and it stayed around there until I felt too bad to keep standing at 5 min. Although I saw some 125’s. Fair enough on that part, it’s what I would expect, on a good day. What surprised me was my B/P: I expected it to drop at least a little, but it was ALL over the map. Systolic was 130, then 140, then 115, then 150, then I had to sit down. I’ve read about hyperPOTS so I guess that sounds like it? If I’m walking around all day with high BP *and* high HR (a normal HR for me just walking around the grocery store etc is at least 135) I’m pretty leery of taking the midodrine, which I’m not to start until after the TTT anyway obviously, or even taking the salt tablets. That would be my luck to give myself a stroke on top of everything else. This EP is new to me and seems to know quite a lot about POTS and related syndromes so I have some hope he will figure something out on the basis of the TTT, but I also worry, not having had a TTT before, whether it actually has any real chance of replicating my symptoms. Being suspended in mid air is not doing laundry or shopping or working, all of which make me too exhausted to function. What do you experts have to say about all of this? 

[p8d]

My TTT was pretty awful and replicated all my symptoms.  I lasted 15 minutes but didn’t faint, I never have.  To diagnose hyper POTS you need your catecholamines checked.  Some places do it during the TTT, some at other appointments.  The test has to be done correctly, blood draw after laying for 10 minutes then another draw after standing 10 minutes if I am remembering correctly.  My BP jumps around as does my HR daily.  The med I take for hyper POTS lowers my BP, sometimes dramatically and then my HR jumps.  It’s a delicate balance that can be thrown off easily.  We are all different but if you have a Dr familiar with POTS you should trust them.