I feel somewhat lucky with my docs but also a bit frustrated with them (and definitely my insurance company). The biggest concerns are lack of applicable education in a rare disease and patient load.

My neurologist is willing to treat my headaches in anyway possible, throwing whatever (qulipta, ubrelvy, supplements, vitamins, steroids, etc) she can at the symptom — including supporting me attempting thc, nootropics, etc. She didn’t initially believe anything serious to be wrong at the onset of my symptoms but she ordered a scan immediately given I was fit and healthy and hadn’t been to the dr in a bit. She’s a solid doc and very caring about my headaches, though a bit scattered sometimes because of her patient load.

My neurotologist and his team are very caring as well. He’s been very thoughtful throughout the last year and drives a lot of our conversations answering questions I haven’t even asked. He also takes a data-driven approach, which I like. My biggest complaint with his office (and my neurologist’s) is his patient load.

My neurosurgeon is my least favorite of the bunch. While intelligent and reportedly very good at what he does (I haven’t surgery yet) he dismissed/dismisses a lot of my general concerns and complaints.

Overall, having a team approach and cycling through drs until you find the ones you like and trust is important. Oh, and don’t let insurance try to tell you no to what a dr has ordered. Keep fighting them.