Support? You ARE kidding, right? My family is sympathetic to a point. They also have all the answers (which are answers no one needs!).

I am probably exaggerating, but the point I want to make is that family isn't as involved as you (the narcoleptic black sheep) are. Family still thinks of you as you WERE - not as what you have become once the disease takes hold. We talk about it, live it, dream it, cope with it, hate it, tolerate it ...do you see where I am going?

For those whose families have circled the wagons around you for protection, they aren't looking for thanks -- they are giving love and understanding. They ACCEPT the "new you" and that is fabulous! Try to be agreeable , under control etc, when you are around them! They can handle your sleep attack during Thanksgiving dinner, or the broken glass you dropped when something triggered a cataplectic episode.

So-oooo- be nice, respectful, and return their love in spades! That will be MORE than enough to keep them happy!

I cope by digging deeper into the disease. I'm pre-med and work as a researcher so I have easy access to dive into papers and other scientific literature. I have found younger doctors to be more helpful and less dismissive. I believe that a doctors understanding is different. They have read about it in a book, they have read case studies, they are taught the symptoms, diagnosis, and treatment, not the experience. Another way I cope, though far more difficult for me, is by telling others about narcolepsy. I think the people that don't have narcolepsy but understand the toll it takes are the people that distribute xywav/xyrem. They call decently often when you first start it and every month to schedule delivery after and they know how much that delivery means to us. Hope this helps!

I have a wonderful provider, a sleep specialist Dr. Parthasarathy. He is amazing, caring, knowledgeable and sincere. I’m fortunate to have a great provider. I don’t believe I could have survived my narcolepsy 1 with cataplexy without his support.

Sounds like you need a new neurologist stat. I would get a doctor that’s boarded in sleep medicine.

Doctors aren't really equipped to diagnose it without training. Family give me that amused expression and others think I'm making it all up