The Power of Community: Supporting One Young Man with Narcolepsy Lifts Us All

These are unprecedented times in the wake of COVID-19. I am sending virtual hugs, healthy vibes and restful nights to each of you. During a time when things feel pretty heavy, I wanted to share a heart-lifting story from my past week.


In late February/early March, Project Sleep (in conjunction with the Sleep Research Society) conducted a big “action alert” asking advocates to reach out to their Representatives across the US. The community rallied together incredibly, and as a result, a remarkable 41 Members of the U.S. House of Representatives signing onto an important letter advancing our sleep research and awareness priorities!

That was huge for the House side, but next we needed to work on the Senate side.

Team Missouri:

On the Senate side, we conducted a more “targeted” effort, preparing a letter to Senator Roy Blunt of Missouri, because he serves as the chairman of an important subcommittee that will make decisions regarding the possible CDC sleep awareness efforts. 

Last week, I contacted a few Missouri patient advocates to ask them to consider signing onto the letter to their Senator Blunt, and one advocate, Karin offered to gather additional Missouri advocates to sign on! She asked how many names might be impactful… I reported back that a dozen or two dozen would be amazing. 

Corresponding with Karin:

And then yesterday, I opened my email to find that Karin had rallied an incredible 47 individuals and families in Missouri to sign onto the letter, all in support of one young man in their community living with narcolepsy with cataplexy. Karin wrote:

Julie:  Please add the attached list of advocates from the state of Missouri in support of this letter. 

We have a young man in our lives who is living with narcolepsy with cataplexy, and any funds which can be obtained to educate professionals and the public about these types of disorders has our full support. 

I wrote back to Karin:


Thank you so much for this message and incredible news!! WOW! You’ve collected so many names, you did such a tremendous job and this list

To Diagnose Positional OSA, Oximetry Is a Simple Option That Works

A study suggests that positional oximetry is a clinically viable alternative to an auto-scored home sleep apnea test in the characterization of positional obstructive sleep apnea.

By Lisa Spear

In-lab polysomnography (PSG) continues to be the gold standard in diagnosing positional obstructive sleep apnea (POSA), but these studies, especially split-nights, can still result in positional components of sleep apnea being overlooked. Additionally, patients are increasingly doing sleep studies in their own homes. What if there was a simpler way to identify POSA? A team of researchers recently validated the use of oxygen desaturation index (ODI) to recognize positional sleep apnea. Their findings are published in Nature and Science of Sleep.

The use of oximetry is commonly used to screen for obstructive sleep apnea pre-surgically, in epidemiological studies, by dentists to titrate oral appliances, and internationally by general practitioners, says study first author Dan Levendowski, president and co-founder of Advanced Brain Monitoring, which markets Night Shift POSA therapy.

“We believed that each of these applications would benefit
from having positional information. For example, if a patient was identified
with positional OSA prior to surgery, supine avoidance could reduce the
OSA-impacted risk of post-surgical complications,” Levendowski says. “There was
also a trend toward dentists using oximetry rather than a level III device to
titrate oral appliances. Without having access to positional oximetry
information, we found that dentists were not optimizing the effectiveness of
the oral appliance.”

The study compared two approaches for identifying patients with POSA using automated scoring of home sleep study data without manual editing by a sleep technologist. One approach measured airflow, oximetry, pulse rate, snoring, and sleep position to calculate the apnea-hypopnea index (AHI), as typically used in home sleep apnea tests; the other approach used only oximetry and sleep position to measure the ODI.

According to the study, agreement between AHI and ODI values
for classifying positional obstructive sleep apnea were excellent. “Knowing
that ODI is a more robust signal than airflow with less data loss, this gives
clinicians confidence that simple and easily derived metrics can help guide
important clinical decision-making,” the authors …

Sleeping Positions That Help Alleviate Snoring and Back Pain

Some sleeping positions are better for helping ensure you have a good night’s rest, especially if you suffer from complaints like snoring or other aches that can keep you up at night.

Dr. Ben Smarr is a sleep science adviser for Oura and an assistant professor of bioengineering and data science at UC San Diego. Through Smarr’s research, he’s seen that people who sleep in certain positions tend to report better sleep quality overall. Since personal preferences and health concerns are a big factor, it’s important to consult your doctor on your specific situation.

One of the best positions for snoring or sleep apnea is on your side. “While many people are most comfortable on their backs, side sleepers snore less, so that is usually recommended,” Smarr says.

Whether you snore or not, side sleeping is the preferred position for most people according to The Sleep Better Council. Sleeping on your left side specifically is the best position if you suffer from acid reflux, heartburn or indigestion at night. If you do have back pain or hip pain while sleeping on your side, you can place a pillow between your legs or knees to relieve the pressure.

Get the full story at

from Sleep Review…

FDA Warning Letter: EPAP Mask Maker Is Misbranding Its Snoring Device

CPAPNEA Medical Supply has a cleared 510(k) for the Optipillows EPAP mask for the sole intended use of alleviating snoring during sleep in adults, states the FDA in a warning letter.

Your device is misbranded under section 502(o) of the Act because you failed to submit a premarket notification as required by section 510(k) and 21 CFR 807.81(a)(3). Specifically, labeling found during FDA’s inspection shows that the Optipillows EPAP Mask is intended to treat obstructive sleep apnea, which is a major change or modification from the cleared intended use of the device requiring a new 510(k), including appropriate performance data in compliance with section 514 of the Act.  The Optipillows EPAP Mask is also misbranded under section 502(a) of the Act, 21 U.S.C. § 352(a), because statements found in the device labeling are false or misleading because they claim the Optipillows EPAP Mask is as effective as CPAP devices at treating obstructive sleep apnea, suggest that the Optipillows EPAP Mask can be substituted for CPAP devices, and claim that FDA has clear EPAP technology for treating obstructive sleep apnea. 

Read the full warning letter at

from Sleep Review…

Pulmonary and Critical Care Medicine Associates Joins Penn State Health

The approximately 60 employees at the Lemoyne and Carlisle locations of Pulmonary & Critical Care Medicine Associates (PCCMA), including 10 physicians and nine advanced practice providers, were welcomed into Penn State Health.

Becoming a part of the Penn State Health network allows PCCMA to offer local residents enhanced access to complete, specialized pulmonary and critical care close to home, in coordination with the future Hampden Medical Center and Penn State Health’s flagship Milton S. Hershey Medical Center.

Since its start in 1978, PCCMA has been recognized as a leading resource for treatments for a wide range of diseases and illnesses, including COPD, asthma, lung cancer and chronic bronchitis. At the sleep laboratory in Lemoyne, practitioners evaluate and treat disorders including insomnia, narcolepsy, REM sleep behavior disorder, snoring and sleep apnea.

Get the full story at

from Sleep Review…

9 Factors that Cause Sleep Sensor Artifact

And how to troubleshoot them during a sleep study.

Sleep technologists play an essential role in identifying and correcting artifact—unwanted signals, physiological or non-physiological—during polysomnography (PSG).

According to Todd Eiken, RPSGT, FAAST, vice president of product development at Dymedix Diagnostics, “it is critically important that a sleep disorders technologist, as well as an interpreting physician, identify and eliminate artifact that occurs during a PSG. Artifact can mask or reduce the visibility of clinically significant PSG information and also create false-positive and false-negative results.”

Below are 9 common factors that can cause sleep artifact and how to correct them.

Factor 1: Patient sweat

Brad Dotson, RRT, RPSGT, director of sales and marketing at Neurotronics, advises that the temperature in the sleep study room can impact sweat artifact. “Obstructive sleep apnea patients tend to sweat profusely. Having the ability to lower room temperature via air conditioning or fan can reduce sweat artifact,” he says, adding that sweat artifact can cause channels move in a swaying motion away from and back to their baseline.

Amy Schwarz, BSRT, RRT-SDS, clinical product support specialist for Philips, recommends that it is best to “keep the patient room a little cooler than for patient comfort.”

Factor 2: Lead wires

Mike Olmsted, president/CEO of ElectraMed Corp, offers several solutions for artifacts caused by lead wires.

The first is use the right wire for the job. “Do not mix different style leads of different lengths, cup configurations, and properties within an input channel,” he says.

Bundling wires together instead of allowing them to just hang free between the acquisition amplifier and sleep subject helps to reduce noise artifact and stabilize the baseline.

“It is also a good idea to change reusable wires at least once a year,” he adds. “As these wires age, the impedance will increase. It may not be broken, but it can still impact your impedance levels.”

Factor 3: Snore sensors

“Snoring sensors can be challenging due to the sensor being attached to the skin and exposed to sweat, pressure, accidental high pressure, and other interference,” says Sarah Paddock, director of sales and

Philips Releases Global Sleep Satisfaction Trends

Royal Philips announced the findings from its 5th annual sleep survey in a report, “Wake Up Call: Global Sleep Satisfaction Trends.” Philips surveyed more than 13,000 adults in 13 countries to capture attitudes, perceptions, and behaviors around sleep. This year’s results show global sleep satisfaction remains low with worry/stress, relationships, and cell phone use reported as key sleep inhibitors.

Worry and Stress Continue to Affect a Good Night’s Sleep

Only 49% of people are satisfied with their sleep, with worry/stress reported as the most limiting factor to a good night’s sleep (33%). Interestingly, fewer people in 2020 are taking action to improve sleep compared to 2019, with nearly all listed strategies to improve sleep lower or consistent in 2020 when compared to 2019 results. For example, reading before bed was the most popular strategy used to improve sleep in 2019 (39%), but only 28% of people report reading to improve sleep in 2020. Other notable distinctions in sleep-related behavior appeared across age and gender differences.

“The decrease in people taking action to improve sleep is alarming, especially when it is clear people around the world deeply value sleep. Sleep deficit impacts people both mentally and physically, so we need to educate people on available sleep resources and empower them with the confidence that their efforts will pay off,” says Mark Aloia, PhD, global lead for behavior change, sleep & respiratory Care at Philips, in a release. “As we head into the next decade, Philips is focused on designing a future where technology leveraged across the entire sleep ecosystem can help people get the most out of their lives.”

Sleep Issues Coming Between Bed Partners

Factors putting quality sleep at risk stem from both social and technology distractions. When it comes to relationships, 36% of people with a partner/spouse agree they sometimes sleep separately from their partner/spouse to improve their sleep, and 30% agree their or their partner/spouse’s difficulty sleeping is impacting their relationship. Despite experts’ recommendations to the contrary, almost 4-in-10 report using their phones right before falling asleep (39%) or as soon as they wake up (39%).

STOP-Bang Questionnaire Effective for OSA Screening in Multiple Sclerosis

A common screening tool for obstructive sleep apnea could be appropriate to look for disordered breathing in patients who also have multiple sclerosis, according to new research.

In multiple sclerosis, a STOP-Bang (for Snoring, Tiredness, Observed apneas, high blood Pressure, BMI, Age, Neck circumference, Gender) cutoff score of 3 or greater produces a sensitivity similar to that seen in patients without multiple sclerosis (MS), according to study results presented at the 2020 Forum for Americas Committee for Treatment and Research in Multiple Sclerosis held February 27-29, 2020, in West Palm Beach, Florida.

Obstructive sleep apnea is closely associated with MS, based on the STOP-Bang screening tool that assesses characteristics known to confer the risk for obstructive sleep apnea. The STOP-Bang tool has been widely used across a variety of patient samples but has not yet been validated in patients with MS. Researchers of the study assessed the sensitivity and specificity of the STOP-Bang tool in patients with MS.

Researchers of the study used data from an ongoing randomized controlled trial examining the effects of obstructive sleep apnea and its treatment on cognition in patients with MS. Inclusion criteria were patients with MS aged 18 through 70 years with a STOP-Bang score of 2 or greater, or with a diagnosis of obstructive sleep apnea regardless of STOP-Bang score. All patients underwent STOP-Bang assessments and in-lab polysomnography. Researchers calculated specificities and sensitivities for all STOP-Bang scores and compared them with results from the overnight polysomnography.

Get the full story at

from Sleep Review…

Dentist Helps Patients Sleep Soundly

Sheri Katz has dedicated her life to help people combat sleep apnea, reports  Atlanta Jewish Times.

“We now know that snoring can be a sign of a potentially serious medical condition called sleep apnea,” said Sheri Katz, an Atlanta dentist who specializes in sleep apnea. “The throat is like a long tube. Some people’s throats relax too much as they sleep and their breathing becomes interrupted for seconds and even minutes at a time. People with sleep apnea tend to have more medical problems.”

Get the full story at

from Sleep Review…

The Best Anti-Snoring Pillows, According to Experts

New York Magazine reviewed the possible health implications of snoring and spoke to sleep experts about the best anti-snoring pillows on the market.

“Snoring is basically related to a narrow upper airway, and gravity tends to make things worse,” says Kannan Ramar, a sleep physician and professor of medicine in the division of pulmonary and critical care medicine at the Mayo Clinic, and president-elect of the American Academy of Sleep Medicine. “When you fall asleep, the tongue relaxes a little bit and can fall back and close up the airway. The soft palate and the uvula at the back of the throat relaxes, and that tends to narrow the airway.” Add a new pillow, the theory goes, and you put yourself in a position that reduces the effect of gravity on the back of your neck. Here are some pillows — selected by sleep doctors and sleep product experts — to try out.

Sarah Riccio, a senior writer at sleep product review site Sleepopolis, likes the Xtreme Comforts wedge with its 30-degree angle and 7-inch height. It’s also made from memory foam, which is Winter’s material of choice: “Memory foam tends to support and hold people better,” he says. “It’s conforming around your neck and giving a little bit more of an even distribution of pressure, versus down, which tends to look fluffy, but collapses when you’re on top of it.”

As an alternative to a wedge, Riccio says to look for “pillows with an extra-lofty profile of 5-inches or more,” that will also keep the head and neck elevated. She especially likes the Layla Kapok pillow since it “features a super high profile of 7-inches and does a great job of maintaining its shape.”

Get the full story at

from Sleep Review…