In Case You Missed It! – October/November 2019

The holiday season is upon us and our schedules quickly fill up! Keep up to date with the news we’ve shared via social media with the sleep disorder community since our last “In Case You Missed It!” So don’t worry if you’ve missed anything – we’ve got you covered!


Check out the updated “Treatments” page of our website! Get information about prescription medication affordability in the U.S., medications that are FDA-approved for sleepiness and FDA-approved for cataplexy, and medications that are not FDA-approved for sleepiness but are sometimes used for sleepiness in people with narcolepsy and other hypersomnias. You will also find information about novel and emerging treatments for sleepiness in primary hypersomnias.

We have also updated our “Idiopathic Hypersomnia Summary: Characteristics and Diagnostic Criteria” document to include a section on the unique anesthesia needs of people with IH. Download this latest version, take a screenshot on your phone, save it to your “Favorites” – do whatever it takes so it’s easily accessible when you need it!

Looking for a new healthcare provider that will best meet your needs? Wondering what you can do to to find a provider that is right for you? Where do you start? What resources are available to help you narrow your choices, and what questions should you ask? We’ve put together some questions and tips that can help you find the right healthcare provider for you. Check out our NEW WEB PAGE: Choosing a Healthcare Provider: Some Questions to Ask to Find the Right One for You.


Distinct patterns of electrical activity in the sleeping brain may influence whether we remember or forget what we learned the previous day. Researchers at UCSF Weill Institute for Neurosciences determined that two distinct types of slow brain waves seen during sleep, called slow oscillations and delta waves, respectively strengthened or weakened the firing of specific brain cells involved in a newly-learned skill. Read more about this interesting study!


This October, the  New York Times highlighted Kleine-Levin Syndrome (KLS), a devastating sleep disorder unfamiliar to many, if not most, physicians. The article describes KLS as a mysterious sleeping disorder that turns life into a waking dream. “He was sleeping up to 20 hours a day, and when he was awake, his mind and attention seemed elsewhere — though he couldn’t say where.” Read the article here!

Sharing your story can help others. This opinion piece from the New York Times, Early to Bed, Early to Rise Makes Me Exhausted, Depressed and Sick shares what it’s like living with a chronic circadian rhythm problem. Although not specifically about IH, much of what the author writes about is relatable to many suffering from a sleep disorder. The author states, “For many, including myself, this syndrome is an invisible but real burden” and “… our eyes might be open, but, for all intents and purposes, we are still sleeping.” Spreading awareness and educating others about IH and other sleep disorders is vital to helping us all get #BeyondSleepy.


If you have purchased PROVIGIL®, NUVIGIL® or generic Provigil® (MODAFINIL), you need to read this important information regarding a class action settlement. A proposed $65,877,600 settlement has been reached in a Class Action Lawsuit on behalf of consumers and third-party payors regarding the prescription drug Provigil® and its generic equivalent modafinil. The Class Action Lawsuit claims that Defendants violated state antitrust and consumer protection laws by delaying the availability of less expensive generic versions of Provigil®. Please note that no one is claiming that Provigil® or its generic equivalent modafinil is unsafe or ineffective. Read more about whether this could affect you or someone you know.

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