Well, My appointment went pretty well. The PA was very nice. We did do a sitting and standing BP and it was relevant. Dropped 23 points in 30 seconds. She took me off the amlodipine (Norvasc) and started me on Metoprolol (long acting) beta blocker. My BP is too high all the time except during a crash when it goes to something in the healthy range lol. But still big (40+) swings which isn't good. After all the research I've done I still didn't understand what bb's do. She explained that it helped block the erratic signal between my brain and heart. (found out later she was talking about epinephrine) which is why she didn't need to do those tests, I guess. I asked about blood volume tests and she said She didn't need it at this time. Just drink fluids and in Any Form except alcohol or much caffiene. Not just water. Water dries my mouth out. Sounds stupid but it washes all my saliva out and I feel like cotton mouth.
She's worked with POTS for 30 yrs! I was stunned, as we so often read here that so many docs don't know what it is! I mentioned my EDS as a possible explanation but still got that brush off. Said to go back to the rhumatologist for that. That's a bit frustrating. Not that I expect her to do something except chart it Maybe? Be a little interested? Typical specialists . I think she was surprised that the heart clinic I went to 5 years ago did everything EXCEPT a tilt table test though. She didn't think I had to worry much about compression hose unless I wanted to just get a cheap pair for those hot days. I don't pool badly. Yay! She's hoping we can stabilize my BP to 130-140 but she knew it might be tricky.
I took her the database of my vitals which she thought was amazing, but then cautioned me about overwhelming myself with too much reading and charting because of all the confusion about the many concomitant conditions. (I felt a little foolish) but her colleague told me to go Google it . (She was like, " he said What? That doesn't sound like him. He must Be had a bad day.") So yes, I probably went overboard, but mostly I'm just fascinated by it all and I think my research helped! She understood though because after 39 years (post delivery of my daughter), I finally know what this is and tips to help myself. But, I think I will now redirect my energy to more fun things for awhile and hope this settles down. Hoping you all find good help too! Wish me luck and chime in if anything sounds familiar. I'll check in on ya!