Curious to hear people's CVST recovery stories/timelines?

I'm at about one-year post diagnosis/getting admitted to the ER and hospital. I'm in recovery, my large clot is much smaller, but I'm still having head pain. I'm on a low dose of Diamox but every time I try to taper off it, my head pain goes up and I get some weird vision stuff too. Has anyone had a similar experience? I'm feeling pretty down/hopeless about it.