u/Brave_Question3840

I’m getting a TTT tomorrow morning because my specialist isn’t convinced it’s POTS but more orthostatic hypertension secondary to hEDS, but I mean I have all the POTS symptoms too. I get syncope very often, and all the presyncope symptoms too!

Has anyone had their TTT with orthostatic hypertension? Or hyperPOTS? How did it go?
I assume it will be awful but I wonder what you experiences?

I’m getting a TTT tomorrow morning because my specialist isn’t convinced it’s POTS but more orthostatic hypertension secondary to hEDS, but I mean I have all the POTS symptoms too. I get syncope very often, and all the presyncope symptoms too!

Has anyone had their TTT with orthostatic hypertension? Or hyperPOTS? How did it go?
I assume it will be awful but I wonder what you experiences?

I’ve started clonidine 0.1mg x2 a day, once morning once at night about three weeks ago. I have noticed a significant reduction in the adrenaline dumps caused by my hyperPOTS, but it has not touched my heart rate whatsoever. I mean it lowers it at rest, in the 70s-80s, but standing up its not lower than 130-150s, no matter what. My blood pressure is still very high constantly, sitting down now i’m at 152/100. HR 110 and won’t go lower unless I’m laying down.

I have over 7g of sodium a day as my doctor told me up to 10g, I drink 3-4L of water, compression socks, small meals etc. I also have hEDS so exercise is complicated.

Anyway I wanted to ask those of you who take clonidine, are you having a similar experience? I walked up stairs yesterday and was at 190 and it wouldn’t lower under 150s for hours.
Is this normal for clonidine? I can’t see my doctor until july, even if I try.