Narcolepsy Nerd Alert: Narcolepsy & Napping

Is napping an unwelcome symptom of narcolepsy or a helpful treatment? Got “nap shame?” We got together with special guests Dr. Luis Ortiz and Mary Murray to discuss in our Narcolepsy Nerd Alert live event: “Narcolepsy and Napping” on June 30th, 2021.

Meet Our Special Guests:

Luis E. Ortiz, MD is a pediatric sleep specialist at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida. Living with narcolepsy himself, Dr. Ortiz offers invaluable insights from both a medical perspective and first-hand lived experience.

Mary Murray is a teacher, mother, avid reader, and lover of travel living in Los Angeles, CA. She was diagnosed with idiopathic hypersomnia at the age of 36. As a Rising Voices of Narcolepsy advocate, she hopes to help others understand what it’s really like to live with this rare disorder.

Narcolepsy and Napping Toolkit & Video

If you missed the live broadcast, we’ve got you covered. Download the toolkit with highlights from our guests and audience members, and watch the video.

Narcolepsy Nerd Alert toolkits accompany each broadcast. The toolkits are designed for people living with narcolepsy and their loved ones to offer new tools, tips, and perspectives on navigating narcolepsy.

Project Sleep’s live broadcast series Narcolepsy Nerd Alert takes a deeper dive into specific topics related to narcolepsy. Hosted by award-winning geek Julie Flygare, each live event invites fellow #NarcolepsyNerds to explore unique aspects of the narcolepsy experience, contemplate bold questions, and learn from each other.

Tune in to Narcolepsy Nerd Alert live events on Project Sleep’s Facebook page on the last Wednesday of every month. View all broadcasts and explore upcoming topics on our Narcolepsy Nerd Alert page.

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1 Comment. Leave new

  • Excellent question! Absolutely without any doubt nor hesitation a short 20-ish minute nap is THE best, top therapeutic treatment for the type 1 narcolepsy that I experience. Naps are more effective for me than any other pharmaceutical or non-pharmaceutical treatment option that I have trialed to date (and I have failed a handful of treatments).

    I used to occasionally have “nap shame.”That was back when I was unaware of my accurate diagnosis that usurped nine experienced clinicians and 13 years to unveil/discover. Post accurate diagnosis and post large denial period (of what narcolepsy really is and how it affects me on a daily, incessant basis) I never shame myself for taking a nap (nor does my patient and understanding family)….

    That being said, napping is also an unwelcome symptom of narcolepsy in that needing this activity gets very old very fast. Needing to nap frequently can also, at times, interfere with living life. The need for frequent naps seems to place life on hold for a bit. I do not allow this to negatively impact my quality of life for I am an individual with narcolepsy (opposed to a narcoleptic individual).

    Reply

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