I have officially declared myself to be my husband's advocate. What that means exactly, I'm still working on, but for now it means helping him.
The most important help for the treatment of narcolepsy - or any other chronic illness - would be finding a good doctor. A doctor who not only understands the disease, but is willing, able, and eager to help you find treatment for it. My husband's current doctor is not that guy.
They weigh him, take his blood pressure, and ask, "So how have you been feeling?" My husband tells them any symptoms he's been experiencing - or he doesn't. Either way, the result is the same. He gets his new prescription and leaves. Even when he tells them that things aren't going so great - which they often aren't - the visits are very, very brief. Even when my husband repeatedly asked to have the pressure on his CPAP machine adjusted - he was waking up gasping at night, even with his mask in use - they never called back, never returned messages, and of course we never heard from the doctor himself. This led to the night my husband could've died. They always mailed out his prescriptions late. Despite reminder phone calls from us a week in advance, the prescription would inevitably arrive 2 -3 days after my husband had already run out of his medicine. This led to an ugly cycle of sudden withdrawal which wreaked havoc on his mental/emotional state.
Now I'm sure you understand Step One: find a new doctor.
My husband has an appointment with our family doctor in a couple of days. I'm going with him. I've made a list of things to discuss with the doctor, including the fact that the specialist we're seeing isn't doing anything special. He's not even doing anything helpful. Hopefully our family doc will be able to recommend someone else.
Someone who cares.