How Do People Cope? Are Doctors Helpful, And Do They Understand Narcolepsy? | MyNarcolepsyTeam

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How Do People Cope? Are Doctors Helpful, And Do They Understand Narcolepsy?
A MyNarcolepsyTeam Member asked a question 💭

I think that people here, Wales, do not understand about narcolepsy. It is certainly very unusual and I have never met anyone with the same condition. The consultant, who originally diagnosed it and was very supportive, sadly left (not because of me!!)and my doctors here don't seem to understand. One even told me that I should not have a sleep during the day! Thankfully, my family and close friends are supportive but, I am sure, a lot of people think I am lazy!

posted November 20, 2022
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A MyNarcolepsyTeam Member

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 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!

posted November 29, 2022
A MyNarcolepsyTeam Member

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!

posted November 20, 2022
A MyNarcolepsyTeam Member

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.

posted May 19, 2023
A MyNarcolepsyTeam Member

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

posted March 19, 2023
A MyNarcolepsyTeam Member

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

posted December 25, 2022

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