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Friday, August 26, 2016

WHAT'S HAPPENING: Hypersomnia: When sleeping too much is not a good thing


 SPOTLIGHT: WHEN WE SLEEP TOO MUCH
The media has done a fine job of pushing the critical message that we, as a culture, are sleep deprived. It's true: between untreated sleep disorders, insomnia, mental health concerns, and poor sleep hygiene, our record for getting adequate sleep, night after night, is dismal, on the whole.

But there is such a thing as sleeping too much. Not because of poor sleep hygiene, or emotional problems, but because of a distinct and legitimate category of sleep disorders known collectively as hypersomnia. 

People with hypersomnia―idiopathic hypersomnia, narcolepsy with or without cataplexy, Kleine-Levin Syndrome (Sleeping Beauty Syndrome), and general hypersomnia caused by other factors―suffer from distinctively different levels of severity when it comes to their daytime sleepiness. 

They are not "lucky" because they get more sleep, and they cannot simply drink a cup of coffee and walk it off. They also sometimes have trouble sleeping at night, just like the rest of us, making it that much harder for them to live full, healthy lives. 

They suffer from chronic and often incurable problems whose symptoms and causes are biologically distinctive from the kind of somnolence we experience due to sleep deprivation. 

This week's links were published or updated been 3.22.16 and 8.25.16.


MAR 22 & APR 15 || HEALTH CENTRAL

MAY 11 || SLEEP REVIEW

MAY 13 || JULIEFLYGARE.com
Captain America’s Jeremy Renner wants Narcolepsy as his Superpower?

MAY 18 || HUFFINGTON POST
Dear People With Narcolepsy, You Are Awesome!

MAY 18 || JD SUPRA BUSINESS ADVISOR
Fourth Circuit Rejects Motor Carrier's Defense in Refusing to Hire Driver Diagnosed with Narcolepsy

MAY 19 || KCBD
South Plains narcoleptics refuse to sleep their lives away (news video)

MAY 25 || HYPERSOMNIA FOUNDATION
Sleep Disorders and Your Job – What To Do When The Writing’s On The Wall
Narcolepsy & Hypersomnia

MAY 30 || SOUND SLEEP HEALTH
FAST FACTS: Signs and symptoms of hypersomnolence

JUN 1 || eNEURO
GABA Receptors on Orexin and MCH Neurons are Differentially Homeostatically Regulated following Sleep Deprivation (PDF)

JUN 6 || WTOP.com
What happens when your child’s sleep cycle goes out of sync?
Narcolepsy

JUN 9 || THE DENVER POST
When 11 hours aren’t enough: The rare disorder of perpetual sleepiness
Narcolepsy

JUN 10 || JULIEFLYGARE.com
A Monumental Day: Visiting the White House as a Narcolepsy Advocate

JUN 14 || BUSINESS INSIDER
More sleep may not be making you as productive as you think
Hypersomnia

JUN 15 || BREAKING NEWS IRELAND
Limerick teenager with sleep disorder fights State for compensation after swine flu vaccine
Narcolepsy

JUN 15 || SOUND SLEEP HEALTH
Hypersomnolence: Is there such a thing as too much sleep?
'Long sleep' and hypersomnia

JUN 16 || SLEEP REVIEW
Investigational New Drug Newly Accepted for Phase II Study in Adults with ADHD May Later Be Tested for Narcolepsy

JUN 27 || CBS LOCAL LOS ANGELES
LA Woman Describes Serious Sleep Disorder: ‘It Feels Like Being Awake Inside A Corpse’
Narcolepsy

JULY 3 || RAPID CITY JOURNAL
Family launches campaign to explain sleep disorder
Kleine-Levin Syndrome

JULY 8 || SIOUX CITY JOURNAL
Siouxland teen navigates life with narcolepsy

JULY 11 || SLEEP REVIEW
Managing Narcolepsy Symptoms with Pharmaceuticals: Currently Approved Medications and Promising Drug Trials

JULY 12 || HYPERSOMNIA FOUNDATION
Hypersomnia Research-Where We Are And Where We Are Headed

JULY 18 || SLEEP REVIEW
Clinicians: Swiss Narcolepsy Scale Has High Utility in Narcolepsy Screening

JULY 18 || SLEEP REVIEW
Leadership Program to Help People with Narcolepsy Share Their Stories to Launch in Summer 2017

JULY 21 || CW39 NEWSFIX
Woman with rare sleep disorder sleeps for days, weeks and sometimes even months
Kleine-Levin Syndrome

JULY 26 || HUFFINGTON POST
Doctors Are Prescribing A ‘Date Rape Drug’ For This Medical Condition

JULY 26 || HYPERSOMNIA FOUNDATION
Flumazenil for the Treatment of Refractory Hypersomnolence

AUG 2 || HYPERSOMNIA FOUNDATION
Together, We Can Solve the Puzzle of Hypersomnia

AUG 3 || FIERCE PHARMA
Noted price-hiker Jazz feels the heat as PTO strikes Xyrem patents
Narcolepsy

AUG 3 || FRONTIERS IN HUMAN NEUROSCIENCE
Altered Brain Microstate Dynamics in Adolescents with Narcolepsy

AUG 3 || JULIE FLYGARE
YOUR STORY MATTERS: Introducing Rising Voices of Narcolepsy ℠

AUG 4 || BEND BULLETIN
Interview with an artist: Megan Phallon’s vivid visions hang at Franklin Crossing
Narcolepsy

AUG 4 || NJ.com
N.J. to get millions in settlement over sleep disorder drug
Provigil (modafinil)

AUG 4 || SLEEP REVIEW
Sleep Professionals Dismayed by Portrayal of Narcolepsy in New York Magazine Article

AUG 8 || HYPERSOMNIA FOUNDATION
What’s New in the Diagnosis and Treatment of Hypersomnia in 2016?

AUG 8 || SLEEP REVIEW
Daytime Sleepiness and Attention Deficiencies Linked for Narcolepsy and Idiopathic Hypersomnia Patients Highlight the Need for Clinical Assessment

AUG 13 || JULIEFLYGARE.com
What is my secret? Am I a “typical” person with narcolepsy?

AUG 14 || GREENFIELD REPORTER
Judge sentences man who led police on high speed chase to 10 years in prison
A Greenfield man’s attorney asked a judge for leniency for his client this week, saying the man who led police on a high-speed chase suffers from narcolepsy and other medical conditions that cause him to black out while driving.

AUG 18 || THE MIGHTY
'Finding Your Fairytale' Reimagines Fairy Tales Using People With Chronic and Mental Illnesses
Narcolepsy

AUG 19 || BENZINGA
CME Outfitters Launching a New Live and On Demand Webcast Series on Narcolepsy

AUG 19 || COUNTY TIMES
Pontrobert woman being 'punished' for not being able to work
Narcolepsy

AUG 20 || ATTN:
This Is What It Actually Feels Like to Have Narcolepsy

AUG 22 || HYPERSOMNIA FOUNDATION
Ask the Doctor (new column)

AUG 22 || JULIEFLYGARE.com
New York Times editor’s The Big Thing features Wide Awake & Dreaming: A Memoir of Narcolepsy

AUG 25 || BENZINGA
Janney Initiates Jazz Pharma At Neutral, Cites Potential Competition For 'Blockbuster Narcolepsy Franchise'

AUG 25 || MEDGADGET
Global Sleep Disorder Therapeutics Market : Historical, current and projected industry size by 2015-2021

AUG 25 || SLEEP REVIEW
Study Quantifies Prevalence, Sensitivity, Specificity of PSG SOREMP for Narcolepsy

AUG 25 || SLEEP REVIEW
Why Actigraphy Should Be Considered Before An MSLT to Diagnose Narcolepsy