@cheyne You are quite correct: YOU have to be your SELF-ADVOCATE. To each doctor I'd word very carefully what I'd say about my symptoms while staying calm. (Although internally I'd be anxious, wanting to say "LISTEN UP! I'm scared! I don't know why I'm so UNWELL, and I need YOUR help!)
YOU have to do research on this condition, which I've discovered is considered to be very rare, which is why doctors are so CLUELESS... they have not had an iota of exposure, let alone, experience, with IIH (idIopathic intracranial hypertension). It affects an estimated .2 to 2 people (between ages 25 and 36) out of 100,000 in a general population.
YOU should create a journal. (I do it using Word and save it on my computer but I also do printouts which I place in a binder, so I can read, make post-it notes right onto any page, underline, hi-light. This is a godsend when my eyes are too painful to use my computer.). Make a list of your symptoms, use descriptors (adjectives) that best capture HOW you feel, WHAT you feel, with each symptom. Locate any nearby medical centers that are teaching hospitals, for they are more likely to have neurologists and vascular surgeons who have actually dealt with this rare disease (I have found it referred to as a "disease" as opposed to "disorder"....just semantics, it still is a nasty condition to have). I'm fortunate that my VN is within one of the top teaching/research facilities within my area.
Keep a diary of symptoms: WHEN they occur, WHAT you experienced LEADING UP to an event, WHAT you experienced during the event, HOW LONG it lasted, AND WHAT, if anything, you did to find relief. Make special note of symptoms on your face, temples, eyes, neck, base of head, scalp, and within your brain. ALL of this I have found useful now that I have a vascular neurosurgeon who IS highly knowledgeable with IIH and all that I've experienced and continue to experience. My present neuro-ophthalmologist and my ophthalmogist BOTH are very savvy about this horrid, rare monster that has been my constant companion for about two decades now. I learned that some patients are born with the seeds of the problem, and my VN (vascular neurosurgeon) believes that I was, due to factors that I revealed about my life, and that the extensive brain demyelination that I've had for the past 12 to 15 years has played a role. BOTH venus sinuses are tightly constricted, thus the build up of CSF in my brain...
It's not so much that as you wrote that "could it be beyond their capabilities to try and help." Vast majority of doctors have NO KNOWLEDGE because they were not exposed to it, whether in medical school, while doing their residencies, etc...and definitely can't put 2 and 2 together to come up with a veritable diagnosis because they DON'T KNOW...
And about the psych card: Yeah, my prior ophthalmologist had "that cynical look" on his face, and became cold and indifferent....so I LEFT him (and the hubristic neuro-ophthalmologist)... good riddance...my PRESENT ophthalmologist and the neuro-ophthalmologist are compassionate and kind AND WELL VERSED in IIH, and gear my ocular care to what they know about this monster.
Go on google, search for American Academy of Ophthalmologists and look for help on locating neuroopthalmologists and ophthalmologists within your area. Ask specifically for those dealing with this rare condition. Find major institutes that you can ask the same questions, be PROACTIVE in finding help. Don't be discouraged but do be protective of yourself when and if you are treated like a nut case. (Actually, there is no "if" because you WILL come across dunces who will be skeptical and RUDE.)
This week, I found valid resources on youtube. Check out the presentations by mayo clinic, johns hopkins, and other reputable institutions. The more I learn, the more that I unearth, the less alone I feel, the more empowered I become.
I had a lumbar puncture done last week, a necessary step toward learning the "opening pressure" because my VN said it was crucial toward determining how he plans to treat my situation. I was alert (no general anesthesia) and heard the doctor performing the procedure tell the nurse recording the info, that my OP (opening pressure) was HIGH....Not what I had hoped for, but not surprised at all considering the severity of my symptoms. Lab work was done on the fluid, and the results were concerning: the protein came in at 74 where the high end of normal is 45...and HIGH also were the white and red blood cell counts. I have a video visit with my VN on Friday (today being Wednesday), so I'll learn what those high scores indicate for my situation. I've done a bit of research on them, and stopped because my blood pressure was affected by the troubling info.

cheyne, I am fully aware just what a rough journey you are on, and acknowledge that it it will impact you emotionally, psychologically, physically...try to locate a support group, and if none exists, perhaps start one. That is the situation I am in, ad have been in for years now: no support groups. I'm looking into if possibly an online group exists. I am too overwhelmed right now, what with all the problems from this monstrous disorder coupled with what my neurologist diagnosed in 2024 as advanced multiple sclerosis (at age 76),...and being my husband's caregiver (he's had 2 strokes within the past year)....I just don't have time or energy to spare to start a support group, not at this time....
God bless you on your journey, cheyne. 🙏🏽

Here are a couple of sites to check out, and take notes.😀
Neurosurgery.weillcornell.org Symptoms of Pseudotumor Cerebri
Ninds.nih.gov/health-information/disorders/pseudotumor-cerebri Pseudotumor Cerebri
My.clevelandclinic.org/health/diseases/21968-idiopathic-intracranial-hypertension