Swollen and worsening optic nerves, CSF pressure fine??

I’ve had two lumbar punctures because my NO thought the first one must be inaccurate and neither one met the criteria for IIH, but my optic nerve swelling and vision and symptoms are all getting worse? The NO basically said he doesn’t know what exactly is going on since all my tests were fine but he’s going to treat it like high pressure, prescribe diamox, and see if it helps? Anyone else have a similar experience and did the meds help? Is it possible for your optic nerves to rebel against you for no foreseeable reason?

I really wanted a diagnosis, even if it was a rare and not well understood condition. I am sad and tired and confused.

Edit for extra clarity: my opening pressure was 22.5 at the highest