Welcome Jen,

Keeping in mind we're not doctors here -- just peer support (albeit some quite knowledgeable) -- I hope someone seeing this may have some ideas for you to discuss with your doctor(s?)

Your post caught my attention because it's the fourth that I've seen within the past week re: pseudotumor cerebri (PTC) (a.k.a. Idiopathic Intracranial Hypertension (IIH)). You can find other posts in the archives (try both terms separately) by using the Search facility.

As to why doctors suspect this or that, I'm reminded of an old joke...

The difference between a general practitioner and a specialist is that a GP treats what you have, while a specialist thinks you have what they treat.

Not making light of your situation/feelings -- many of us have been down the road of frightening symptoms and the ordeals of modern medicine. We've been where you are -- maybe not with PTC/IIH, but with whatever has brought us here together. I suffer from debilitating migraines myself (among other things).

Some of the specific forums where I've seen PTC/IIH discussed are:
General Health Conditions & Rare Disorders
Headache
Hydrocephalus
but it has shown up in other forums as well, so again, I encourage you to try the Search tool.

Doc