Hi everyone!
When my POTS symptoms first started, they started very gradually, over years. The tinnitus would completely go away within 10 minutes of me lying flat. If I sat up or stood up, it'd gradually return. As the years passed, it got worse and took hours of lying down for it to completely go away, rather than minutes like before. Since 2019 it got the point where it's 24/7 now, but I still notice a difference if I've lied down through the night. It gets worse after any exercise, after I've ate or when I'm stressed. The worst it ever was when I was just about to faint.
Sometimes if I've been lying in bed for a while and I get up too suddenly (ie, I get a phone call) the ringing will get 3 times worse and stay like that for an hour, even if I quickly go back to lying down. Hearing is normal and I've had many tests done.
Blood pressure is very erratic, sometimes my standing blood pressure is something like 96/91, other times it's 179 over 126. Lowest my resting blood pressure was is 58/37 with a pulse rate of 147.
I don't have a CSF leak, that was extensively ruled out, I've had many scans, with and without contrast, and had two blind blood patches which made me worse, each time I had one the ringing was worse and the muscle twitches would get bad almost instantly.
When I talk to my ENTs about the fact my tinnitus was strictly positional (going from screaming loud to literally vanishing just from lying flat for a while) they look at me like I've got three eyes. It's one of my worst symptoms and I'm still trying to make sense of it.