I’ve been reading on here for like 5 hours and apparently have absorbed nothing..
First, I don’t have POTs... I mean, sometimes I do. But sometimes my heartrate is high while I lay down. And sometimes it doesn’t spike much when I stand. So... not POTs, but close. I also have very labile BP that tends to climb the longer I stand, but also sometimes doesn’t. And sometimes is high laying down! Yay!
Today I have high BP and my heartrate jumps over 30bpm when I stand.
I also have very high renin and aldosterone, and a 24 hr urine catecholamine came back high for NE. Not tumor high. Just like regular high.
No pheo, no renal artery stenosis, no fibromuscular dysplasia, no answers.
Blood work great. Lots of kidney stones.
So for hyperadrenergic POTs, there’s hypovolemia, norepinephrine spillage, and low renin/aldo, right?
Beta blockers usually work well? As do ARB’s or Ace inhibitors? SNRI’s? Beta blockers make my heartrate all crazy like with ups and downs but Corlanor does help lower it a little most days. Losartan helps with BP but doesn’t touch the spikes. They get as high as 180/130 on max dose.
I can’t find a medication that works and now I have kidney disease and I’m so dang tired. I quit my job and sleep like 18 hours a day. I’m miserable. Can’t get into a study because it’s not real POTs, it’s innapropriate sinus tachycardia. My cardiologist told me to try eating breakfast. Like.... What?
I would appreciate hearing the experiences of other members facing similar symptoms!