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Narcolepsy Community Turns a Punch Line into an Opportunity for Awareness

Narcolepsy Network (NN) and the entire narcolepsy community have long worked to dispel myths and misunderstanding about narcolepsy. When Honda Motor Company released a TV commercial using narcolepsy as a punch line, the community quickly and effectively lobbied to have the ad pulled from the airways and the internet. In addition, Honda was persuaded to make several PSAs about narcolepsy and air them on national TV.

NN is pleased that it could work with others in the narcolepsy community to seize the opportunity to increase awareness about narcolepsy with both a major international corporation and among the general public. NN continues to work to fulfill its mission to support people with narcolepsy and increase public awareness of narcolepsy.


How it happened

It all began on a Saturday night last June when Narcolepsy Network Board of Trustees member Dr. Mark Patterson received a message from a friend alerting him to the commercial.

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Investigational Medicine Suvorexant Effective, Well-Tolerated in Insomnia Patients

Merck’s Phase III trials for suvorexant, an investigational medicine for the treatment of insomnia, determined that suvorexant’s 15 mg and 20 mg doses were effective and generally well-tolerated over 3 months in adult patients with insomnia. The data was presented at the SLEEP show.

Based on the analysis, the product reduced how long it took patients to fall asleep while increasing how long it took patients to stay asleep, as early as the first night and at 3 months compared to placebo.

Suvorexant targets insomnia in a way that is different from current treatments, the company says. The investigational medicine targets and inhibits the actions of orexins, neurotransmitters in a specific part of the brain that play a role in keeping a person awake.

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Originally posted in Sleep Review

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Adult ferritin treatment threshold too high for kids with restless sleep

By: DEBRA L. BECK, Family Practice News Digital Network

 JUNE 2, 2014


VITALSKey clinical point: For children with restless sleep, consider iron supplementation at a serum ferritin level of 20 mcg/L.Major finding: A serum ferritin threshold of 20 mcg/L is a better predictor of sleep restlessness in children than is the adult threshold of 50 mcg/L.

Data source: Review of 537 children (1-18 yrs) referred to the University of Michigan pediatric sleep clinic.

Disclosures: The study was supported by a grant from the Charles Woodson Fund for Clinical Research.

 MINNEAPOLIS – Using the adult treatment threshold for serum ferritin to guide treatment in children with restless sleep may lead to inappropriate iron supplementation.

In both adults and children, iron deficiency has been linked to the presence and severity of restless legs syndrome (RLS) and periodic limb movements of sleep (PLMS). For adults, a serum ferritin less than 50 mcg/L is the threshold commonly used to guide iron supplementation for patients with RLS or PLMS.

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An ancient molecule underlies the mechanism for sleep apnea and vascular problems

by Helen Dodson

An ancient molecule underlies the mechanism for sleep apnea and vascular problems

Credit: Shutterstock

(Medical Xpress)—The underlying mechanism of obstructive sleep apnea that causes damage to blood vessels and contributes to hypertension, stroke, and atherosclerosis has been identified by researchers from Yale and elsewhere. The finding points to potential biomarkers for early diagnosis and treatment of these conditions. The study appears in PLOS ONE.Obstructive sleep apnea (OSA) is characterized by recurrent upper airway obstruction while sleeping. It affects up to a fourth of all adults and is associated with increased risk of hypertension, stroke, and cardiovascular disease. But until now, the underlying mechanisms were not fully established.Current evidence suggests, the authors write, that , oxidative stress, and dysfunction in the inner lining of —the endothelium—play roles in the vascular complications of OSA. In addition, endothelial dysfunction is the earliest event in atherosclerosis and plays a pivotal role in all phases of that condition, including plaque rupture.
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New Positional Obstructive Sleep Apnea Therapy

By Jerrold Kram, MD, FCCP

A recently published study found that over 70% of those diagnosed obstructive sleep apnea and having an apnea-hypopnea index less than 60 are at least twice as severe when sleeping on their back as compared to other (non-supine) position.

This condition is referred to as “positional obstructive sleep apnea” (POSA). The most commonly recommended approach for treating POSA is to sew tennis balls into a night shirt. Several manufacturers (REMatee and Zzoma) developed commercial adaptations of the tennis-ball approach using cushions held in place by a waist belt or shoulder harness to restrict back-sleeping.

I recently read very promising study results using a novel position therapy device called the Night Shift. Worn on the back of the neck, Night Shift begins to vibrate when users start to sleep on their back and slowly increases in intensity until a position change occurs. For patients with POSA, 90% responded to Night Shift therapy and had a median apnea-hypopnea severity reduction of 79%!  

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United States: House Passes Bill Requiring Formal Rulemaking Before Implementing Pilot Sleep Apnea Policy

Article by Ilyse W. Schuman

 The House of Representatives overwhelming approved a bill (H.R. 3578) that would require the Federal Aviation Administration (FAA) to use the formal rulemaking process to adopt any new or revised requirement providing for the screening, testing, or treatment of pilots for a sleep disorder.  By the same token, the FAA could institute such a policy for air traffic controllers only if it meets its obligations pursuant to chapter 71 of title 5 of the U.S. Code.

This bill was introduced a day after the FAA announced a new planned policy that would require aviation medical examiners (AMEs) to calculate the Body Mass Index (BMI) – a method for identifying obesity and a measurement that is related to risk of sleep apnea – for every pilot.  Under the terms of the planned policy, pilots with a BMI of 40 or more would need to be evaluated by a physician who is a board-certified sleep specialist, and, if diagnosed with obstructive sleep apnea, treated before they could be medically certified.

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The end of insomnia? Scientists discover the ‘switch’ that tells the brain to go sleep


  • Switch works by regulating neurons in the brain when the body is tired
  • They demonstrated the theory on fruit flies, creating insomniac insects
  • Scientists believe there is a similar group of neurons in the human brain
  • Researchers are now trying to find out how to activate the sleep switch

Scientists think they have discovered the switch in the brain that tells our bodies when to go to sleep.

The discovery, made by neurologists at Oxford University, could pave the way for a treatment to combat sleep disorders such as insomnia.

The scientists think the switch works by regulating neurons, or nerve cells, in the brain. 

Described as a ‘homeostat’ which can tell when someone has been awake for too many hours, the mechanism fires when the body is tired.

Scientists think they have discovered the switch in the brain that tells our bodies when to go to sleep

Scientists think they have discovered the switch in the brain that tells our bodies when to go to sleep

Professor Gero Miesenböck, whose team conducted the research, said: ‘When you’re tired, these neurons in the brain shout loud and they send you to sleep.’

The researchers demonstrated the theory on fruit flies, removing the switch to create insomniac insects.

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Study proposes novel treatment for narcolepsy

Published In Medical News

October 10, 2013

Lancet Neurology, a prestigious journal in its domain, publishes in its last issue, an article entitled “Pitolisant versus placebo and modafinil in patients with narcolepsy: a double-blind randomised trial” authored by Y. Dauvilliers and others from the HARMONY I study group which proposes a novel treatment for this orphan disease. It is accompanied by a Commentary entitled “A need for new treatments in narcolepsy”.

Narcolepsy is a rare disabling disorder mainly characterised by Excessive Daytime Sleepiness (EDS) and cataplexy, a sudden loss of muscular tone following various emotions. Present treatments comprise psychostimulants, like modafinil or amphetamine-like compounds, to fight EDS and sodium oxybate or antidepressants against cataplexy attacks. However these treatments are not fully satisfactory in terms of efficacy, tolerance or administration.

Pitolisant is the first representant of a new class of drugs to be introduced in the clinics, the histamine H3-receptor antagonists; it was designed in 3 European academic laboratories and developed by Bioprojet, a small independent French pharmaceutical company.

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Abstract: Effects of a Heated Tube on Sleep Quality, With Active Heated Humidification During CPAP Therapy In a Cool Sleeping Environment

Printed with permission from Fisher&Paykel Healthcare

Poster Session: Advances in Obstructive Sleep Apnea
Nilius, Georg, Domanski, Ulrike, Franke, Karl-Josef, Ruhle, Kral-Heinz
Chest 2005 128: 232S-a


To compare the effect of conventional humidification with ThermoSmart™ heated breathing tube humidification on sleep quality and patient symptoms.


  • 19 OSA patients, prospectively recruited.
  • Patients underwent two full nights of polysomnography (PSG), in a cool room, whilst on CPAP at their pre-determined therapeutic pressure. Their first night was randomized to either conventional heated humidification or ThermoSmart™ heated breathing tube humidification. Patients crossed over to the alternative treatment arm on their second night.
  • PSG parameters were analyzed to determine objective quality of sleep and subjective questionnaires were administered to determine patient symptoms/side effects of therapy.


results graph

results graph


If condensation forms in the CPAP tubing system sleep quality is considerably reduced. When using CPAP therapy in a cool room, the use of a heated humidifier with a heated breathing tube improves sleep quality and subjective symptom scores.

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