Unsure if I Still Need Diamox, Struggling with Care and Side Effects

I’m a 35-year-old male first diagnosed in 2011. Back then, my symptoms were severe—I was nearly blind due to extreme optic nerve inflammation (I could perceive light but not effectively see), had debilitating headaches, and pulsatile tinnitus.

From 2011 to 2021, I was under the care of a neurologist who, as it turns out, provided substandard treatment and has since been discredited. She had a lot of strange theories about IIH, some possibly valid, but she diagnosed me based solely on MRI findings and my positive response to Diamox—I’ve never had a lumbar puncture.

Fast forward to 2025, and I’m still struggling with subpar care. My current neurologist takes 6+ months to schedule an appointment, and all she does is keep refilling my Diamox prescription. She agreed I could stay on 500mg extended-release once a day since I have no active symptoms, but I’m concerned it’s making me unwell.

Here’s where it gets complicated:

• I also have arrhythmia issues (including AFib and other irregularities).
• My cardiologist suspects I’m highly sensitive to electrolyte loss from Diamox, as I’ve been hyponatremic and hypokalemic during hospitalizations.
• My neurologist says I “maybe” can stop taking Diamox, but it’s risky and would require frequent eye exams—which I can’t even schedule in a timely manner.

I feel lost. I don’t know if I still need to be on Diamox, and the uncertainty is making me anxious. Has anyone been in a similar situation, or does anyone have advice on how to navigate this?

(for transparency sake, I wrote out a very long whining post that i could barely follow after I wrote so I put it into chatgpt to make it more readable and efficient lol)