Such a confusing illness!

Was referred from the opticians, was then seen by ophthalmologist who diagnosed papilodema, was admitted into hospital and had lumber puncture/scans/eye tests... was told I did not have hypertension or papilodema! Diagnosed with optic nerve drusens....
Fast forward to 2017, I was referred to the eye specialist by my doctor as I had severe eye pain/dizziness and flashes in sight. I saw the same eye doctor as before in 2010! He confirmed that I did in fact have papilodema and optic nerve drusens! My vision has deteriorated and my eyes can hurt so much, more than the headaches! Have had two hospitalisation and two lumber punches so far this year both measuring as 34ml. Hated my last LP as he went through a nerve which wasn’t nice. I am on acetazolamide tablets which seem ok but give me painful pins and needles. Though my eye pain is still present.