Healthier Sleep Magazine | Autumn 2021 | Daytime Sleepiness by World Sleep Society

healthiersleepmag.com Autumn 2021 | Daytime Sleepiness Issue

The Science of a

Good Night’s Sleep

Excessive

Daytime Sleepiness

Current Treatments & Medications on the Horizon

Healthier Sleep A publication of World Sleep Society Your Trusted Source for Improving Sleep Publisher World Sleep Society Editor Lindsay Jesteadt, PhD jesteadt@worldsleepsociety.org Issue Reviewers Lourdes DelRosso, MD Melissa C. Lipford, MD Robert J. Thomas, MD Rochelle Zak, MD Sales Manager healthiersleep@worldsleepsociety.org Designer Brook Lanz Copy Editor Wendi Kitsteiner Contributing Writers Margaret Blattner, MD, PhD MaryAnn DePietro, CRT Lindsay Jesteadt, PhD Lynn Keenan, MD, FAASM Wendi Kitsteiner Kiran Maski, MD, MPH Catherine Friederich Murray, MNLM Rosei Skipper, MD

ABOUT For advertising or editorial contact information, email healthiersleep@worldsleepsociety.org or visit healthiersleepmag.com for current rates. Healthier Sleep is published up to six times per year by World Sleep Society, 3270 19th Street NW, Suite 109, Rochester, MN 55901 and distributed to sleep medicine and research professionals as well as the public. No part of this publication may be reprinted or reproduced without written permission. Healthier Sleep does not necessarily endorse the claims or content of advertising or editorial materials. All advertisements and editorial material included represents the opinions of the respective authors. World Sleep Society/Healthier Sleep Magazine does not provide or offer medical advice. All content within the magazine, such as text, graphics, information obtained from sleep experts, and other material, is for informational purposes only. The content is not intended to be a substitute for medical diagnosis, advice or treatment. Relying on information provided by World Sleep Society and/or any of its employees, experts within the material, or other writers is solely at your own risk.

CONTENTS

Autumn 2021 | Daytime Sleepiness Issue

|4| The Science of a Good Night’s Sleep

| 14 | Current Treatments & Medications on the Horizon

|6| Excessive Daytime Sleepiness

Epworth Sleepiness Scale (ESS)

Insufficient Sleep Syndrome

How to Identify if Sleepiness is an Issue

CBT For Hypersomnias

Sleep in the Spotlight

When the Doctor has a Sleeping Problem Too

Co-Morbidities Associated with Narcolepsy

Project Sleep

Wake Up Narcolepsy, Inc.

Five Reasons People Avoid Going to the Sleep Doctor

Preparing for a Sleep Study

IN EVERY ISSUE The BuZZZ about Sleep

Bedtime Reads

Right Now in Sleep Science

Ask the Sleep Doc

PAGE 19

PAGES 11 & 23

PAGE 25

PAGE 32

Your latest buzzword is Orexin

Highlighting two books on narcolepsy

Pediatric hypersomnia survey

Your questions answered by sleep professionals

3 | healthiersleepmag.com

The Science of a Good Night’s Sleep By Margaret Blattner, MD, PhD

hile sleep seems “quiet and restful”, it is in reality an active process and involves complex neurophysiology, engaging a number of brain systems. This multi-component physiology leads to restful sleep night after night but also presents multiple vulnerabilities that can lead to sleep disruption and excessive daytime sleepiness. Healthy sleep is important for physical and mental health. Even one night of disrupted sleep can impact mood, memory, and performance the next day. In addition, chronic disruptions in sleep impact health and wellness longterm. Often sleep scientists think about the regulation of sleep and wake as two connected processes: the sleep homeostatic drive (often referred to as Process S) and the circadian rhythm (Process C). Process S is based on the principle that the longer a person is awake, the sleepier they become (and, conversely, the longer one has been sleeping, the lower the sleep drive). Sleep

4 | Autumn 2021 | Daytime Sleepiness

drive is highest at the end of the day and is increased by sleep deprivation (due to things like study, work, taking care of children overnight, or illness). Sleep drive can also be diminished by taking a mid-day nap. Process S also decreases throughout the night while sleeping. It tends to be lowest in the morning; people usually find it easier to fall back to sleep after waking up early in the night rather than late in the night. This sleep homeostatic drive is impacted by even mild sleep deprivation. For example, getting 7 hours of sleep when a person feels best with 8 hours of sleep can cause sleepiness to intrude during the day or at unwanted times. Achieving healthy sleep is difficult when this process is impacted by pathological sleep deprivation, such as chronic insomnia and chronic sleep insufficiency due to school, work, or family responsibilities. Process S does not switch off immediately on waking up, causing a sluggishness called “sleep inertia” which usually lasts 15-30 minutes.

Better understanding the complex physiology of sleep and arousal allows us target therapy for those with sleep disorders and optimize sleep for better health. In addition to the sleep drive as a determinant of sleep onset and timing, intrinsic daily rhythms also coordinate sleep. Daily patterns in sleep and activity are directed by the intrinsic circadian clock (also called Process C). Nearly every living organism on earth has a daily rhythm of approximately 24 hours set by the earth’s orbit around the sun. The circadian rhythm cues us to feel restful in the evening and feel more awake in the morning; but it also give our bodies timing cues for many activities ranging from when to eat to when to be at our cognitive sharpest. The circadian rhythm is driven by the brain’s central clock, the suprachiasmatic nucleus, which both sets the time and also responds to cues in our environment to reset as needed. The central clock in the suprachiasmatic nucleus sends signals throughout the body to keep the whole system in sync. The strongest of the external cues that keep the central clock aligned to the environment is sunlight. Process C can become dampened in constant dark or light environments (using bright screens at night), in non-sighted individuals, and even seasonally when there are many days without sunshine. Because the central clock serves as both a timekeeper and responds to the environment, the circadian rhythm can respond to changes in the routine—like travel across time zones. The interaction of Processes C and S results in midafternoon sleepiness, which enables a nap.

The suprachiasmatic nucleus not only responds to the environment, but also sets rhythms based on intrinsic neurotransmitters and genetics. Levels of the hormone melatonin, produced by the pineal gland, fluctuate across the day. While melatonin levels typically peak in the evening to promote quiet wakefulness, the timing of this peak is different across individuals: someone with an earlier melatonin peak, the cue to fall asleep is earlier. Someone with a later melatonin peak may not feel like going to bed until late at night (“night owl”). These circadian preferences can be set by daily habits, but may also be genetic. Misalignment between one’s intrinsic daily rhythm and the environment results in feeling sleepy at times that may be inappropriate for study, work, or family responsibilities. Misalignment also seems to be a fundamentally hostile biological stimulus, as it raises blood pressure, inhibits normal blood sugar control, and triggers inflammation. Multiple neurotransmitter systems orchestrate sleepiness and wakefulness. The orexin neuropeptide (also called hypocretin), produced in the hypothalamus, regulates arousal, wakefulness, and transitioning between sleep stages and wake. Orexin also regulates other neurotransmitter systems involved in coordinating sleep and wakefulness, including dopamine, acetylcholine, norepinephrine,

and histamine. Orexin’s role in preventing sleep physiology from intruding into wake accounts for some symptoms seen in narcolepsy. Narcolepsy type 1 is due to a deficiency of orexin, and the episodic loss of muscle tone triggered by emotions (cataplexy) may be due to the paralysis of REM sleep intruding into wake. Optimally, the sleep drive (Process S) and the circadian rhythm (Process C) align, such that the circadian cue to feel tired (melatonin peak) coincides with the end of the day when the homeostatic sleep drive is highest. Regular sleep and wake routines can promote this alignment and support healthy sleep. Better understanding the complex physiology of sleep and arousal allows us target therapy for those with sleep disorders and optimize sleep for better health. ................................................................

Dr. Margaret Blattner

Margaret Blattner, MD, PhD is a sleep neurologist in the Department of Neurology at Beth Israel Deaconess Medical Center in Boston.

5 | healthiersleepmag.com

Excessive Daytime Sleepiness By Catherine Friederich Murray, MNLM

ost of us have had an occasional morning when we wake up thinking, “Just five more minutes. Please just let me sleep five more minutes.” We likely nonetheless drag ourselves out of bed and face the day in a groggy state. Perhaps we had stayed up binging on the latest Netflix series or maybe we have an infant or older parent who isn’t sleeping through the night. We may have struggled through the day in a fog not really thinking clearly, had trouble paying attention or making decisions, and been just a wee bit irritable. We may have dozed off during an important meeting or while watching a movie. Now imagine feeling this way every day almost all day for months or years on end—This symptoms is what is commonly referred to as "Excessive daytime sleepiness" and is a symptom of an underlying problem as we discuss later. Without medication to wake up or stay awake, most people with EDS are certainly not operating at optimal efficiency. 6 | Autumn 2021 | Daytime Sleepiness

THE EPIDEMIOLOGY OF EDS EDS is pervasive. Researchers estimate the rates of EDS to be between 10% and 20% in children, 16% to 40% in adolescents, and between 16% and 33% in adults in the United States. A recently conducted research study in Switzerland identified factors related to sleepiness among more than 2,700 participants who filled out questionnaires and underwent a complete physical exam when the study began (at baseline) and five years later. Researchers performed overnight sleep testing (polysomnography) on 1,400 of the participants at baseline and again five years later. The researchers found that 11.3% of these adults had EDS at baseline, with 16% having severe sleepiness. Over the five-year study period, 5.1% of those who were not sleepy at baseline developed EDS. Risk factors that increased the likelihood of developing EDS included male sex and having depressive symptoms, moderate to severe obstructive sleep apnea (OSA), and poor sleep quality.

THE CAUSE OF EDS EDS has many causes. Insufficient sleep is the primary cause of EDS in our 24/7 society because we often don’t prioritize sleep, even though it is one of the pillars of health, just like exercise, diet, and mental well-being. EDS might also be related to the use of an over-the-counter, prescribed medication, or recreational drug, therefore EDS might be secondary to a medical or psychiatric condition. EDS is common in several neurologic conditions and brain injuries, as well as in depression. EDS is also one of the primary features of several sleep disorders, including obstructive sleep apnea (OSA), the central disorders of hypersomnolence—narcolepsy types 1 and 2, idiopathic hypersomnia (IH), and Kleine-Levin syndrome—and circadian rhythm disorders. THE WIDE-RANGING EFFECTS OF EDS The consequences of EDS are widespread, not only for the affected individual, but also society. People with EDS are more likely to be involved in a motor vehicle crash or workplace accident, use more healthcare resources, have decreased productivity at home and work, have more challenges in interpersonal relationships, and have a lower quality of life in general. Adults and children with EDS are more likely to have anxiety and depression. According to Suresh Kotagal, MD, Emeritus Professor of Neurology, Mayo Clinic Alix School of Medicine, “Something as innocuous as a birthday party can be one of Dr. Suresh Kotagal the most challenging situations for a school-aged child with narcolepsy. They might be having fun and laughing with their friends and have an episode of cataplexy, which is a brief sudden episode of muscle weakness in response to an emotional trigger, such as laughter. The episode may lead to a head roll, the jaw dropping open, or even the person falling to the floor. This can be embarrassing, leading to anxiety about social situations and withdrawal.” Idiopathic Hypersomnia (IH) is another sleep disorder that causes excessive daytime sleepiness. People with IH are likely to have anxiety around the issue of sleep. This is not surprising given that waking to an alarm is challenging to say the least. People with IH might miss

holidays and significant events in their life, not because these aren’t important, but because they slept through the five alarms they set, even the one that shakes their bed like an earthquake. Imagine going to bed at night and hoping that, when you wake up, the 7:00 on the clock will be AM and not PM. THE EVALUATION OF EDS Getting to the root cause of EDS requires further evaluation, which includes a visit to your primary care or sleep specialist to talk about bedtimes and wake times, and whether these times are different on school or workdays and on days off. Factors that limit sleep or circadian rhythm disorders should be excluded before an attempt is made to diagnose other causes of EDS. Taking a thorough sleep history can elucidate symptoms that the person may not recognize as being part of a sleep disorder, such as snoring, choking, or pausing breathing during sleep. These symptoms might indicate sleep apnea or symptoms of cataplexy, which is indicative of narcolepsy. Including bed partners or parents in these discussions may be helpful. Reviewing medications might reveal something as simple as the use of a bedtime over-the-counter sleep aid that leads to next-day grogginess because of the drug’s long half-life; or alcohol use, which has a negative impact on sleep; or even commonly prescribed medications for seizures, heart conditions, or antidepressants. When a person reports to their specialist that they are tired or sleepy, the specialist must first distinguish sleepiness from fatigue. Next, they must determine the person’s level of sleepiness. This is most often accomplished by having the person complete one or more questionnaires, the most widely used being the Epworth Sleepiness Scale or ESS, a 24-point scale, with a higher score indicating greater sleepiness. The ESS asks a person to rate their likelihood of falling asleep in eight different situations, such as watching TV, having a conversation, or sitting in traffic. However, the ESS captures only one aspect of EDS, and therefore patients often complete other questionnaires as well. In children, the ESS for Children and Adolescents, or ESS-CHADS, is the most commonly used scale. EDS continued on page 8 7 | healthiersleepmag.com

EDS continued from 7 The evaluation of EDS continues with a physical examination. Dr. Kotagal, points out that one of the red flags for a diagnosis of narcolepsy in children, in addition to the EDS, is recent weight gain and precocious puberty (that is, the early onset of secondary sexual characteristics, such a breast development or facial hair). The next step in the evaluation, if necessary, includes obtaining objective measures of sleep, which could include polysomnography, the Multiple Sleep Latency Test (MSLT), and actigraphy or a sleep log (or both). If a diagnosis of narcolepsy is suspected, the specialist may order genetic testing or take a sample of cerebrospinal fluid (the fluid that bathes the brain and spinal cord) to check for levels of a neurotransmitter called hypocretin/orexin. Although the MSLT criteria for a diagnosis of narcolepsy type 1 are clear and have been well validated, the results of the test in people with narcolepsy type 2 or idiopathic hypersomnia are less likely to be accurate. According to Lynn Marie Trotti, MD, MPH, Associate Professor of Neurology at Emory University, the diagnosis of Dr. Lynn Trotti idiopathic hypersomnia and narcolepsy type 2 may be particularly challenging. “There are a multitude of causes of EDS, and no one test can perfectly diagnose these disorders. Thorough evaluation of a person’s symptoms, medications,

medical history, sleep schedule, and diagnostic testing by a sleep specialist are very important in establishing the correct diagnosis”. THE TREATMENT OF EDS Once the cause of EDS has been determined, treatment can begin. In the case of insufficient sleep, optimizing sleep quality and quantity are the best treatments, as is employing good sleep hygiene. If prescription medications are leading to the EDS, switching medications or the times they are taken may be helpful. It is important for people who have OSA to be continually evaluated for the presence of EDS because EDS may continue to occur in people whose OSA is well treated (for example, with positive airway pressure.) People with one of the central disorders of hypersomnolence or who have EDS even when they are optimally treating their OSA are likely to need both pharmacologic and nonpharmacologic therapies. According to Dr. Kotagal, “The management of pediatric narcolepsy or idiopathic hypersomnia includes drug treatment, psychiatric support, maintaining a regular sleep schedule, exercise, and managing lifestyle issues, such as going to college, driving, and living safely when away from one’s childhood home.” This is similar to the way in which EDS is treated in adults. CONCLUSION EDS is a common condition that, whether due to lack of sleep or a sleep disorder, leads to lower quality of life and a great burden on society. Recognizing EDS and either making lifestyle changes to properly address sleep needs or identifying and effectively treating an underlying sleep disorder can improve quality of life and decrease the associated societal burdens. *Citations available on healthiersleepmag.com

.................................................................... Catherine Friederich Murray, MNLM earned her BS in biomedical communications at the University of Minnesota and her masters in nonprofit leadership and management from Arizona State University. She has worked as a writer and editor in sleep for more than two decades and led two sleep-related patient advocacy organizations during that time. 8 | Autumn 2021 | Daytime Sleepiness

WORRIED ABOUT EDS?

EPWORTH SLEEPINESS SCALE (ESS) The Epworth Sleepiness Scale (ESS) is a validated screening tool used to assess excessive daytime sleepiness (EDS). It is a short, self-administered questionnaire designed to measure a person’s average sleep propensity, or their general level of sleepiness during various daily situations. How likely are you to doze off or fall asleep during the following: 0= Would never doze | 1= Slight chance of dozing 2= Moderate chance of dozing | 3= High chance of dozing 1. Sitting and reading 0 | 1 | 2 | 3 ................................................................................................................. 2. Watching TV 0 | 1 | 2 | 3 ................................................................................................................. 3. Sitting inactive in a public place (eg, a theater or meeting) 0 | 1 | 2 | 3 ................................................................................................................. 4. As a passenger in a car for an hour without a break 0 | 1 | 2 | 3 ................................................................................................................. 5. Lying down to rest in the afternoon when circumstances permit 0 | 1 | 2 | 3 ................................................................................................................. 6. Sitting and talking with someone 0 | 1 | 2 | 3 ................................................................................................................. 7. Sitting quietly after a lunch without alcohol 0 | 1 | 2 | 3 ................................................................................................................. 8. In a car while stopped for a few minutes in traffic 0 | 1 | 2 | 3 ................................................................................................................. Total:

Scores for the ESS can be interpreted as follows: 0-5: Lower Normal Daytime Sleepiness 6-10: Higher Normal Daytime Sleepiness 11-12: Mild Excessive Daytime Sleepiness 13-15: Moderate Excessive Daytime Sleepiness 16-24: Severe Excessive Daytime Sleepiness

If these issues concern you, contact your primary care physician. Please remember that EDS is treatable. 9 | healthiersleepmag.com

Insufficient Sleep Syndrome Getting enough sleep? By Lynn Keenan, MD, FAASM

illions of people suffer from chronic sleep wake disorders that make them struggle to get through the day. Many others burn the candle at both ends to juggle work and family and play, but with the effect of electronic lights and lots of caffeine can keep pushing themselves through their busy days. But is this healthy, and how much sleep do we really need? A consensus statement in 2015 established adults should sleep 7 or more hours per night on a regular basis to promote optimal health. Over the years, multiple studies have linked sleep restriction, or getting less than 7 hours sleep on a regular basis, to increased weight gain, diabetes, hypertension, heart disease, stroke, dementia, and death. In addition, studies have shown those who sleep less have poorer immune function. In a study by Dr. Aric Prather, subjects exposed to a cold virus were more likely to become sick if they didn’t sleep enough. Those sleep deprived before getting the flu vaccine will also show less of a protective response. It is very hard to lose weight if someone is getting less than 6 hours of sleep, and they will often

10 | Autumn 2021 | Daytime Sleepiness

In a study comparing men ages 19-35, one night of missed sleep led to as many off-road driving incidents as those with a blood alcohol level of 0.08%. start craving carbohydrates if sleep deprived. So perhaps, the growing obesity epidemic in many countries may be made worse by significant numbers who chronically get less than 7 hours of sleep. In addition to the personal effects on health of sleep restriction, sleepiness can have significant impact on society, with more motor vehicle accidents. In a study comparing men ages 19-35 in a driving simulator, one night of missed sleep led to as many offroad driving incidents as those with a blood alcohol level of 0.08%.

Job errors can also increase. Those with chronic sleep deprivation have a harder time updating their strategies as new information arrives, and may continue to keep trying a failed solution. They can become moodier, with worse communication skills, and professionalism can lapse. Despite the decline in judgment, those with sleep deprivation tend to markedly underestimate their fatigue and impact of the sleep deprivation on their function...so they may not actually realize how poor of a job they are doing.

WHAT CAN BE DONE? So, what can we do to help more people get enough sleep? In recent years, we have tried to make the importance of Dr. Lynn Keenan sufficient, good quality sleep more of a priority at the University of California San Francsisco Fresno campus. Many medical residents become very sleep deprived with the long hours and changing shifts, along with balancing the rest of life. We gave all of the residency departments lectures on the effects of sleep deprivation, as well as on sleep disorders. We gave overviews of cognitive behavioral therapy for insomnia, as well as screened for sleep apnea with free sleep testing and counseling. We gave monthly fatigue management tips and put light therapy boxes in their call rooms in the hospital to help improve alertness during the overnight shifts. Our surveys before and after the interventions showed less fatigue affecting patient care, fewer near miss motor vehicle accidents, fewer needle sticks, and better scores on sleepiness ratings. They had an increased understanding of the importance of better sleep and addressed it more often with their patients. Perhaps we can all do our part to raise the awareness of getting enough sleep – to make all of us happier, smarter, and healthier. *Citations available on healthiersleepmag.com

...................................................................... Dr. Lynn Keenan has been practicing sleep medicine for 28 years and is currently a clinical professor of medicine for University of California San Francsisco - Fresno and program director for the sleep medicine fellowship there.

Bedtime Reads Looking to learn even more? Each issue, we highlight books about sleep.

Available on Amazon

Wide Awake and Dreaming: A Memoir of Narcolepsy by Julie Flygare Winner of the San Francisco Book Festival Award for Biography/ Autobiography, Wide Awake and Dreaming is a revealing first-hand account of dreams gone wrong with narcolepsy. It's the brave story of one woman trampling over barriers and finding light in the darkest of circumstances. Julie Flygare was on an ambitious path to success, entering law school at age 22, when narcolepsy destroyed the neurological boundaries between dreaming and reality in her brain. She faced terrifying hallucinations, paralysis, and excruciating sleepiness. Narcolepsy was a wake-up call for Julie. Her illness propelled her onto a journey she never imagined, from lying paralyzed on her apartment floor to dancing euphorically at a nightclub; from the classrooms of Harvard Medical School to the start line of the Boston Marathon.

11 | healthiersleepmag.com

YOUR TRUSTED SOURCE FOR IMPROVING SLEEP A MAGAZINE FROM WORLD SLEEP SOCIETY Join the 18,000 individuals, sleep clinics, hospitals and other professional sleep businesses receiving Healthier Sleep Magazine to their inboxes.

• Instant online access available • Up to six issues per year, each issue highlighting a different subtopic in sleep We are a trusted source within the sleep community, now bringing our worldwide expertise to the patient level.

Welcome to Healthier Sleep. IN EVERY ISSUE

ISSUE TOPICS • DAYTIME SLEEPINESS • RESTLESS LEGS SYNDROME

• • • •

SNORING & OSA BETTER SLEEP FUTURE OF SLEEP BABY & SLEEP

Healthier Sleep is published up to six times per year by World Sleep Society. World Sleep Society is a membership organization for professionals working in the field of sleep medicine and research with a mission to advance sleep health worldwide.

CONTACT US For more information or to subscribe, visit Healthiersleepmag.com. For questions, contact healthiersleep@worldsleepsociety.org.

HOW TO IDENTIFY IF SLEEPINESS IS AN ISSUE Have you ever felt grouchy or irritable and blamed it on a bad night of sleep? Well, you were not wrong. Daytime sleepiness can affect a person’s mood as well as their physical health. It is important that you recognize the signs of excessive daytime sleepiness so you can take the necessary steps to address it. You may be dealing with excessive daytime sleepiness if you are experiencing any of the following: • Irritability • Difficulty focusing on tasks/conversations

HOW MUCH SLEEP DO WE ACTUALLY NEED According to the American Academy of Pediatrics and the Center for Disease Control and Prevention, there are some general guidelines, depending on your age, for the proper amount of sleep you need. • Birth to 3 months: 14-17 hours (per 24 hours) • 4 to 11 months: 12-16 hours (per 24 hours) • 1 to2 years: 11-14 hours (per 24 hours)

• Memory issues

• 3 to 5 years: 10-13 hours (per 24 hours)

• Difficulty learning new things

• 6 to 12 years: 9-12 hours (per 24 hours)

• Difficulty regulating emotions or mood

• 13 to 18 years: 8 to 10 hours (per 24 hours)

• Slower reaction times • Difficulty making decisions • Difficulty staying alert and awake

WHEN TO TALK WITH YOUR DOCTOR If you feel sleepy all of the time and it is affecting your life, you should see a doctor and discuss your symptoms. There are many underlying causes that could contribute to your daytime sleepiness.

• 18 to 60 years: 7 or more hours per night • 61 to 64 years: 7-9 hours • 65 years and older: 7-8 hours Remember, these recommendations can vary and not all individuals who are the same age will require the same amount of sleep.

Sleep disorders, neurological disorders, other health problems, and even medications could be to blame. It is important to start by identifying the amount of sleep you are getting each night and the amount your body needs.

13 | healthiersleepmag.com

Current Treatments & Medications on the Horizon By Wendi Kitsteiner

ou walk into your doctor’s office and walk out with a diagnosis of narcolepsy. What does that mean? Where do you go next? What does treatment look like for you?

Classical narcolepsy includes daytime sleepiness, but in order to be diagnosed, there are other features that need to be deemed present as well. The three main symptoms associated with narcolepsy include:

Dr. Michael Thorpy, MD is director of the SleepWake Disorders Center, Montefiore, and professor of neurology, Albert Einstein College of Medicine. He took the time to speak with Healthier Sleep Magazine regarding this important topic for patients dealing with sleep issues.

• Excessive daytime sleepiness.

Dr. Michael Thorpy

NARCOLEPSY According to Dr. Thorpy, “If a patient presents with excessive daytime sleepiness, and we determine that the patient has narcolepsy, we need to determine the severity of it and what the clinical features are.”

14 | Autumn 2021 | Daytime Sleepiness

• Abnormal REM sleep phenomena of which cataplexy is the main symptom. (Cataplexy is defined by a sudden loss of muscle tone while a person is awake.) • Disturbed nocturnal sleep.

Many patients with a narcolepsy diagnosis will require a combination of drugs, however, the first line of drugs is most always a medication called oxybate. “There are two different types of oxybate,” Dr. Thorpy explained. “There is sodium oxybate which has a high content of sodium associated with it. And then there is a newer form also known as low-sodium oxybate or mixed cation oxybate which has about 92% less sodium.” The choice between drugs has mostly to do with the fact that many patients dealing with narcolepsy may also be facing cardiovascular challenges (and some other medical conditions) that require them to not be consuming large amount of sodium.

Sodium oxybate is a liquid medication given before bed and then again 2.5 to 4 hours later during the night. “It has the advantage of improving not only the daytime sleepiness but also any abnormal REM phenomena that occur, and it also helps nocturnal sleep.” In fact, sodium oxybate is really the only medication that treats all the features of narcolepsy. If a patient is using sodium oxybate and still having daytime sleepiness, additional medication may be required. If after treatment with sodium oxybate, the patient has daytime sleepiness and some abnormal REM phenomena, pitolisant might be up for discussion. “Pitolisant is taken during the day and helps not only the daytime sleepiness but also helps that abnormal REM phenomena,” Dr. Thorpy explains. It is one of the only daytime sleepiness drugs that is unscheduled. Farther down the line in medication options for narcolepsy are methylphenidate and amphetamines. The problem with both of these drugs is that, while they may help the daytime sleepiness, they may also present significant side-effects, particularly cardiovascular. These drugs also have the potential for abuse. For many patients, just because a drug is the best for them, doesn’t mean they can get approval to take it. Drug choice can be affected by which drug will be approved by their insurance. Neuro medications are more expensive and therefore more difficult to get approved. Insurance companies can also hesitate in granting approval for new medications. IDIOPATHIC HYPERSOMNIA Idiopathic Hypersomnia is another disorder that can cause excessive daytime sleepiness. Only recently has the FDA approved the first drug for treating this condition. In August 2021, low sodium oxybate gained FDA-approved for treatment of idiopathic hypersomnia, and therefore became the first FDAapproved drug for that condition. Dr. Thorpy shared that because of this, “people have generally resorted to the drugs that have been used in narcolepsy – predominantly the stimulants because by definition they don’t have the abnormal REM sleep phenomena that narcolepsy has.” Common prescriptions for idiopathic hypersomnia include the modafinils or solriamfetol. Methylphenidate and amphetamines are also a possibility for patients dealing with this condition.

ON THE HORIZON There are many drugs that may be ready in the next year or two. These include: • Reboxetine: Currently undergoing Phase III clinical trials. This is an anti-depressant that appears to be helpful in treating cataplexy as well other features of narcolepsy unlike other anti-depressants that only seem to help with cataplexy. This most likely would be coupled with other drugs depending on what symptoms remain after using this medication. • Once nightly Sodium Oxybate: There is currently some development of a sodium oxybate medication that only needs to be given once a night. The problem is this drug will not be of the low sodium variety which may prove a problem for some patients. • SUVN-G3031: The company Suven Life Sciences is exploring another histamine receptor histamine-H3 receptor antagonist (or histamine agonist) that they believe has some advantages over its current competitor: pitolisant. There are currently no head to-head trials between the two medications so it may come down to which drug has a better safety profile. • TAK994: According to Dr. Thorpy, one of the most exciting areas of development is right here with drugs in the orexin agonist category. “These are drugs that stimulate the receptors that are primarily involved in narcolepsy,” he explains. These drugs are currently under investigation, and it will be well over a year before it is even determined if these drugs have a good enough safety protocol to move forward. There is currently no evidence that this drug has a positive effect on nocturnal sleep, but it does seem to help with excessive daytime sleepiness and cataplexy. • Mazindol: Once upon a time this was a weight control drug. However, there is now some evidence of its off-label help with narcolepsy. Time will tell. ...............................................................................................................

Wendi Kitsteiner formerly wrote for the RLS Foundation and Mayo Clinic. She currently lives on a farm in East Tennessee with her husband where they are homeschooling their four children. 15 | healthiersleepmag.com

CBT For Hypersomnias By MaryAnn DePietro, CRT

xcessive and persistent sleepiness is a hallmark of a group of sleep disorders known as central disorders of hypersomnolence, which includes narcolepsy and idiopathic hypersomnia (IH). Narcolepsy is a neurological condition that interferes with the ability to control the sleep/wake cycle, leading to excessive daytime sleepiness and sleep disruption. The sleepiness can be severe and impair functioning, as people with narcolepsy can fall asleep in the middle of activities, such as when driving. Idiopathic hypersomnia (IH) is also a neurological sleep disorder that causes excessive daytime sleepiness regardless of how much sleep a person gets. According to the Hypersomnia Foundation, people with the disorder may wake up from naps and still not feel refreshed. Both disorders can adversely impact daily activities, affect overall wellbeing, and diminish quality of life. As a result of IH and narcolepsy, emotional and phycological issues can also develop. Problems such as depression and anxiety are common and people with these conditions can feel socially isolated or stigmatized for their condition. Currently, there is no cure for either idiopathic hypersomnia or narcolepsy. While standard treatment often includes medication, other forms of treatment may also help. Researchers are studying the role cognitive behavior therapy may have in treating both narcolepsy and hypersomnia.

16 | Autumn 2021 | Daytime Sleepiness

WHAT IS COGNITIVE BEHAVIOR THERAPY FOR HYPERSOMNIAS (CBT-H)? The theory behind cognitive behavior therapy is that our thoughts and thinking patterns may affect our behaviors. If we change our thinking patterns, we may also be able to change our behavior. According to the American Psychological Association, CBT can help people identity thought patterns that lead to negative behaviors. For people with narcolepsy or IH, it is not negative thoughts that cause the symptoms, but the thinking patterns can lead to worsening of depression and anxiety. CBT-H can teach individuals new ways to cope with symptoms, which may decrease associated issues, such as anxiety and depression. CBT-H may also help people get a better understanding of their symptoms and learn coping skills and problems solving. As individuals learn new techniques, they may gain a sense of confidence in their ability to handle their condition. This is known as self-efficacy.

We found that people were still struggling with symptoms even with treatment. This prompted us to develop a CBT program to see if we could address the clinical gap in treatment for these two sleep disorders.

HOW DOES CBT-H HELP? CBT-H is a form of psychotherapy that helps individuals with IH or narcolepsy gain a better understanding of how their thoughts and behaviors may play a role in symptom management. Cognitive behavior therapy is not meant to replace standard treatment for these two disorders. Instead, CBT-H is used in addition to medication to reduce the frequency and severity of symptoms. CBT-H is not a one size fits all approach to treating people with narcolepsy or hypersomnia. Individual goals may vary. Some examples of strategies and techniques of CBT-H include the following: • Planned naps and structure during the day to improve functioning • Relaxation exercises and regular schedules to promote sleep quality at night • Specific strategies for managing anxiety and depression related to hypersomnia symptoms • Education about hypersomnias to empower patients to better explain their condition to others • Modifying beliefs to decrease symptoms of depression and enhance self-efficacy

The overall goal of CBT-H is to improve social functioning and phycological welling. For example, improving functioning at work, school, or relationships can have a positive effect on overall quality of life. WHAT DOES THE RESEARCH SAY? Dr. Jason Ong, the Director of Behavior Sleep Medicine at Nox Health and Adjunct Associate Professor at Northwestern University, conducted a feasibility study to determine if CBT-H helped improve quality of life or decreased symptoms for people with hypersomnia and narcolepsy.

The first series of studies involved surveys and interviews to determine what was missing in treatments that patients with narcolepsy and IH were currently receiving. “Participants felt their quality of life was not addressed with Dr. Jason Ong standard treatment,” said Ong. “We found that people were still struggling with symptoms even with treatment. This prompted us to develop a CBT program to see if we could address the clinical gap in treatment for these two sleep disorders.” The most recent study, which was funded by the American Academy of Sleep Medicine Foundation, involved 35 adults with either idiopathic hypersomnia or narcolepsy. The adults participated in six-sessions of CBT-H using videoconferencing. “The use of telehealth allowed the program to be more accessible to people that may not have been able to participate,” said Dr. Ong. Components of the sessions included learning techniques to regulate emotions, strategies to reduce symptoms, such as planned naps, and ways to build healthy habits. The study found participants reported a decrease in depression symptoms and an improvement in self-efficacy. Dr. Ong explains, “Preliminary data showed CBT-H showed promise in treating IH and narcolepsy. But additional research is needed to confirm that the CBT-H program is what impacted the improvements we saw in this study.”

CBT continued on page 18 17 | healthiersleepmag.com

CBT continued from 17 TIPS FOR DEALING WITH NARCOLEPSY AND HYPERSOMNIA In addition to the possible benefits of CBT, additional factors may be useful. Treating narcolepsy and hypersomnia often takes a comprehensive approach. A combination of medication, support, and healthy lifestyle habits may help manage the condition. Consider the following tips: Stay active. Getting regular exercise may help with alertness and energy level. Develop a consistent sleep and wake time. Getting into a regular sleep/wake pattern is helpful to get your body used to a rhythm. Limit caffeine intake several hours before bed. Caffeine is a stimulant and can interfere with restful sleep. Make your sleep environment comfortable. Most people sleep best in a cool, quiet room. Block out noise or light as much as possible.

Work with your doctor. Narcolepsy and hypersomnia may be treated with medication. In some cases, it is trial and error to see what works. Maintain good communication and let your doctor know about any side effects from your medications. Enlist support. Talk to your family and friends about how they can help. Also, consider joining a support group, which can be a great source of information. ...................................................................................................

MaryAnn DePietro, CRT is a medical writer and licensed respiratory therapist with over a decade of clinical experience, MaryAnn DePietro has been published in magazines, newspapers and on health websites. She earned degrees in both respiratory therapy and rehabilitation. As a therapist, she has worked with hundreds of patients with medical conditions, such as sleep apnea, and other sleep disorders.

Mindfulness For Mindfulness For Narcolepsy Narcolepsy ❖Have you been diagnosed with narcolepsy? ❖Have been diagnosed with narcolepsy? ❖Do you you struggle with depression or anxiety?

❖Do youThestruggle with depression or anxiety? Behavioral Sleep Medicine Lab is evaluating the feasibility of a

mindfulness meditation program designed to reduce psychological distress for The Behavioral Sleep Medicine Lab is evaluating the feasibility of a people with narcolepsy.

mindfulness meditation program designed to reduce psychological distress for If you have symptoms of people depression or narcolepsy. anxiety, and have established standard with care for narcolepsy, you may be eligible for participation.

If you have symptoms of depression or anxiety, and have established standard Contact us if you are interested in taking partfor in this study: care for narcolepsy, you may be eligible participation.

Your Participation Includes: Email: ascent@northwestern.edu | Phone: 312-503-6627 Principal Investigator: Jennifer Mundt, Ph.D. / STU00209890

• Complete a screening to determineIncludes: eligibility to Your Participation participate.

18 | Autumn 2021 | Daytime Sleepiness

The BuZZZ about Sleep Your Latest Buzzword is Orexin, also known as hypocretin. In 1998 two separate teams, utilizing different approaches and for entirely different reasons, reported the discovery of a new gene. One team named the gene orexin and the other named it hypocretin. Regardless of which name you choose to use, these neuropeptides are produced in the hypothalamus and control sleep/wake behavior by promoting and maintaining wakefulness and suppressing rapid eye movement (REM) sleep. They also regulate feeding behavior, energy homeostasis, reward systems, cognition, and mood. A loss of orexin neurons can result in excessive daytime sleepiness, fragmented sleep, and cataplexy. Narcolepsy is caused by the loss of these neurons. *Citations available on healthiersleepmag.com.

19 | healthiersleepmag.com

Sleep in the Spotlight Over the past several years, two hot topics have emerged, with an impact on health and safety, from issues associated with daytime sleepiness. The first calls for the elimination of DaylightSaving Time. The American Academy of Sleep Medicine put out a position statement due to the significant public health and safety risks resulting from the misalignment between the circadian biological clock and the light/dark cycle. The second area looks at school start times, specifically for middle and high school students. The American Academy of Pediatrics has identified insufficient sleep in adolescents as an important public health issue that needs to be addressed not only for the health and safety of our students but also for their academic success.

AMERICAN ACADEMY OF SLEEP MEDICINE “It is the position of the American Academy of Sleep Medicine (AASM) that the U.S. should eliminate seasonal time changes in favor of a national, fixed, year-round time. Current evidence best supports the adoption of yearround standard time which aligns best with human circadian biology and provides distinct benefits for public health and safety.”

AMERICAN ACADEMY OF PEDIATRICS "The American Academy of Pediatrics strongly supports the efforts of school districts to optimize sleep in students and urges high schools and middle schools to aim for start times that allow students the opportunity to achieve optimal levels of sleep (8.5–9.5 hours) and to improve physical (eg, reduced obesity risk) and mental (eg, lower rates of depression) health, safety (eg, drowsy driving crashes), academic performance, and quality of life.”

For more information visit aasm.org

For more information visit aap.org

*Citations available on healthiersleepmag.com

20 | Autumn 2021 | Daytime Sleepiness

PRESENTS

Am I sleep deprived?

How much sleep do I need?

ADVANCING PUBLIC SLEEP HEALTH

Why won’t my child sleep? Does exercise really help sleep?

What is the impact of pregnancy & menopause in women?

What are the consequences of poor sleep?

Do women need more sleep than men?

How do I sleep better?

DO I HAVE SLEEP APNEA?

bit.ly/WSSyoutube

HAVE SLEEP QUESTIONS?

VISIT THE WORLD SLEEP SOCIETY YOUTUBE CHANNEL TO GET THE ANSWERS FROM SLEEP EXPERTS IN A SERIES OF LECTURE-BASED PRESENTATIONS

When the Doctor has a Sleeping Problem Too By Rosei Skipper, MD

r. Luis Ortiz always knew he wanted to be a doctor when he grew up – it was only a matter of getting into school and picking a field. He thought maybe surgery – picturing his future self working long hours in sterile operating rooms, operating long into the night. But Dr. Ortiz’s body had a different plan. His parents had always noticed his sleepiness. Beginning around the age of ten, Dr. Ortiz frequently nodded off at school, while doing homework or even just sitting watching tv. But visits to his pediatrician and medical tests couldn’t find any cause. A bright and avid student, he managed to do well in school, oftentimes “reading far ahead in the textbooks,” so he would always have an answer ready when called on. He may have fallen asleep a lot in class, but he did so well in school, who could really worry?

socializing, and working. There was also a description of a collection of symptoms known as cataplexy: sudden loss of muscle tone that some patients with narcolepsy experience. Stunned, Dr. Ortiz thought to himself “That’s ME!” A visit to a Sleep Medicine specialist and sleep studies quickly confirmed the diagnosis. Dr. Ortiz had Narcolepsy, a rare but not unheard of sleep disorder which often begins in childhood and generally persists for life. The mystery of his sleepiness was solved.

My life was changed when I received the correct diagnosis.

It wasn't until college that Dr. Ortiz’s excessive sleepiness finally caught up to him. With the increased demands of a full class load, extracurriculars, and a busy social schedule, there suddenly wasn’t enough time in the day. His grades plummeted, and suddenly his dream of becoming a doctor was in serious jeopardy. Devastated, he withdrew from his classes and arranged for a lighter course load so he could get back on track. Fortunately, one of those classes happened to be Introduction to Abnormal Psychology. A SUDDEN INSIGHT One afternoon Dr. Ortiz was flipping through his textbook, reading ahead as he often did to prepare. Suddenly, he happened upon a vignette about narcolepsy. In the story, a man was described as being sleepy since childhood, of falling asleep while studying, 22 | Autumn 2021 | Daytime Sleepiness

A LONG ROAD FORWARD The diagnosis may have been made, but Dr. Ortiz still had challenges ahead. Although there have been many advancements in the understanding and treatment of narcolepsy, Dr. Ortiz emphasizes that it is very important for patients to have “realistic expectations for treatment. Sometimes people think once they are treated they will be superhuman, and accomplish everything! That’s just not realistic for anyone.”

The most common treatments for narcolepsy are long acting stimulants, but medications like SSRI antidepressants and drugs that can help control cataplexy are also used. Regardless of which treatment is utilized, most patients will have to work closely with their sleep doctor to find the treatment that works best. And that treatment can change over time! Non-pharmaceutical treatments are just as important as medication for managing symptoms. For Dr. Ortiz that can mean taking naps when needed, adding movement into his day, and making sure to have a consistent sleep schedule. THE FUTURE IS BRIGHT Dr. Ortiz was successful in realizing his dream of becoming a physician, though ultimately he decided that surgery wasn’t a good fit given the inevitable sleep deprivation. At first Dr. Luis Ortiz he hesitated to go into Sleep Medicine, but ultimately he has found it very rewarding to care for patients with similar disorders to himself. When asked for tips on managing a chronic illness in the academic and professional worlds, Dr. Ortiz encourages people to be upfront with their supervisors and colleagues. “Let them know what’s going on and what accommodations you will need to do your best.” Dr. Ortiz notes that our society still “has a long way to go in order to appreciate the importance of getting good rest,” and that he hopes that telling his story will help other people who may be suffering from sleep issues. “Everyone benefits from increased education, especially teachers and parents. My life was changed when I received the correct diagnosis.” For more information on Narcolepsy and its treatment, Dr. Ortiz recommends wakeupnarcolepsy.org and

project-sleep.com.

Dr. Luis Ortiza is a physician in the Sleep Center at Johns Hopkins All Children’s Hospital. He specializes in narcolepsy, hypersomnia, obstructive sleep apnea, and skeletal dysplasias. ................................................................................................... Rosei Skipper, MD completed her Psychiatry residency and Child fellowship at the Mayo Clinic in Rochester, MN. She is currently pursuing further training in psychoanalytic therapy.

Bedtime Reads Looking to learn even more? Each issue, we highlight books about sleep.

Available on Amazon

Waking Mathilda: A Memoir of Childhood Narcolepsy by Claire Crisp A native of England, Claire Crisp had it all—a strong marriage, three healthy children, and her own home in Bristol. Then Mathilda, the baby of the family, would receive a diagnosis that would change their lives forever. Diagnosed at age three as the world's then youngest child with narcolepsy, the joyful and energetic Mathilda rapidly dissolved into someone unrecognizable. In this compelling narrative, Claire Crisp chronicles the fight for Mathilda's treatment. Leaving their family and country in England, the Crisps begin a new journey—one of faith, of loss, and of love as immigrants to the western shores of the United States.

23 | healthiersleepmag.com

Co-Morbidities Associated with Narcolepsy Narcolepsy is a life-long sleep disorder that affects the brain’s ability to control sleep-wake cycles. With a prevalence of approximately 1 in 2000 individuals, a speedy diagnosis is typically rare. Oftentimes, individuals with narcolepsy also have other co-occurring medical conditions which can make a proper diagnosis difficult.

Narcolepsy presents unique challenges that negatively affect various facets of a person’s life. Even when an individual is optimally treated for the narcolepsy symptoms, other health, social, academic, and/or work-related issues may still be present. Attention to these potential co-morbidities associated with narcolepsy is essential to the comprehensive treatment and management plans.

High Blood Pressure Cognitive Deficits

10 Eating Disorders

Psychiatric/ Mental Health Disorders

High Cholesterol

4 7

Precocious Puberty

6 Weight Gain

24 | Autumn 2021 | Daytime Sleepiness

5 Chronic Pain

Diabetes

Cardiovascular Disease

Right Now in Sleep Science Pediatric Hypersomnia Survey By Kiran Maski, MD, MPH

entral nervous system disorders of hypersomnolence typically start in early adolescence yet diagnostic delays and misdiagnosis are common, resulting in years of untreated symptoms, exposure to potentially harmful and unnecessary treatments, and increase in co-morbid depression. Investigators at Boston Children’s Hospital developed a Pediatric Hypersomnia Survey (PHS) and performed a validation study across multiple sites in the United States. The study is still under journal review. The PHS items were developed based on data collected from focus groups of patients, parents/guardians/teachers, and school nurses. In the validation phase, a total of 331 children aged 8-18 years participated (patients with narcolepsy type 1 (n=64), narcolepsy type 2 (n=34), idiopathic hypersomnia (n=36), and other sleep disorders (n=97), and healthy controls (n=100).

The PHS showed significant correlations with objective multiple sleep latency test measures as well as existing validated sleepiness surveys. The PHS showed excellent accuracy in identifying pediatric patients with IH and narcolepsy compared to healthy controls and patients with other sleep disorders. Implemented in clinical practice, the PHS could potentially decrease diagnostic delays and time to treatment for children with narcolepsy and idiopathic hypersomnia. *Citations available on healthiersleepmag.com

......................................................

Dr. Kiran Maski

Kiran Maski, MD, MPH is an Assistant Professor at Harvard Medical School and child neurologist and sleep medicine specialist at Boston Children’s Hospital. Dr. Maski’s clinical work and research is focused on pediatric central nervous system hypersomnia (CSN) disorders.

25 | healthiersleepmag.com

PATIENT ORGANIZATION HIGHLIGHT

ounded in 2013, Project Sleep is a nonprofit organization that aims to bridge the gap between sleep health and sleep disorders while bringing a patient driven focus to the sleep space. Julie Flygare, President and CEO of Project Sleep, states that “while these are both urgent public health issues, they must be addressed simultaneously,” adding, “if 1 in 5 have a chronic sleep condition, then it should never be left out of conversations about sleep health.” To Julie Flygare this end, Project Sleep educates and empowers individuals using events, campaigns, and programs to bring people together and talk about sleep as a pillar of health. Project Diagnosed at the age of 24 with narcolepsy, Flygare expresses “one of the most striking things for me was the social experience of having Narcolepsy and that people thought it was a joke.” She also notes that there was a “general lack of awareness about sleep and that people were not taking sleep seriously.”

Another initiative of Project Sleep is the Jack & Julie Scholarship. This is a national scholarship program that supports students with narcolepsy and idiopathic hypersomnia while helping to fostering awareness. Additionally, Flygare hosts the Narcolepsy Nerd Alert which is an educational video and toolkit series that explores various aspects of the narcolepsy experience. Finally, Project Sleep led the creation of World Narcolepsy Day (annually on September 22nd) to bring the community together and generate awareness on a global scale. Twenty-Seven organizations, internationally, colead this initiative and plan various events worldwide on this special day.

Sleep educates and empowers individuals using events, campaigns, and programs to bring people together and talk about sleep as a pillar of health.

Project Sleep has numerous initiatives in place to help support their mission. Flygare shares “the Sleep Advocacy Initiative is probably one of the highlights.” Beginning in 2017, Project Sleep partnered with the Sleep Research Society to go to Capitol Hill to talk about the importance of sleep research. Flygare expresses, “We are proud of the progress we have made in advancing a greater focus on sleep disorders research at NIH and we continue to push for that…even though the sleep research portfolio has been going up over the last decade, the individual funding for sleep disorders was not keeping on par.”

26 | Autumn 2021 | Daytime Sleepiness

Through the advocacy initiative, Project Sleep also works towards advancing healthcare and treatment access as well as education and awareness for sleep. Project Sleep’s Rising Voices of Narcolepsy program works to train people with narcolepsy to effectively share their stories through public speaking and writing. In essence, it is creating the next generation of patientadvocates and preparing them to take an active role in spreading awareness.

Flygare explains that the ultimate goal of Project Sleep is to “make sleep cool.” To learn more visit project-sleep.com

This is an exciting time for people with narcolepsy due to the emerging advancements in different therapies and recognition of the challenges around mental health that people with narcolepsy experience.

PATIENT ORGANIZATION HIGHLIGHT

ounded in 2008, Wake Up Narcolepsy, Inc. (WUN) is a nonprofit, patient advocacy organization dedicated to driving narcolepsy awareness, education and research towards improved treatments and a cure. Executive Director, Claire Crisp, explains, “Narcolepsy remains an under-recognized, under-reported, and under-diagnosed condition that impacts every 24-hour period of a person’s life.” Wake Up Narcolepsy works to provide funding for research, awareness, and support for individuals with narcolepsy through a plethora of programs. Claire Crisp Each year WUN participates in the prestigious Boston Marathon through the John Hancock Non-Profit Program to raise funds that are then directly donated to narcolepsy research. For 2021 their goal is to hit the one-million-dollar mark for funds donated to research since the organization’s inception. Crisp states, “While there are many therapeutic and research developments in Narcolepsy, securing a timely diagnosis remains a huge challenge in both adults and children.” Additionally, Crisp hosts the popular Narcolepsy 360 Podcast series (available on all major podcast platforms) which takes a panoramic view of narcolepsy from multiple perspectives, including patients, caregivers, researchers, and clinicians. WUN also holds multiple

Narcolepsy Education Days each year (both in-person and digitally) for individuals with narcolepsy and their families. These events allow attendees to connect with other individuals with narcolepsy and to access the latest research and information in the field. Another valuable resource provided by WUN is the weekly online support groups for individuals with narcolepsy to connect with one another to share their successes and hardships with others who are in the same shoes. Finally, WUN partners with the Center for Courageous Kids to host family retreats for children with narcolepsy and their families. Oftentimes, before attending camp, children with narcolepsy have never met other children with the same diagnosis. One remarkable thing regarding all these programs and supports is that they are free for individuals to access. Crisp ends by adding, “This is an exciting time for people with narcolepsy due to the emerging advancements in different therapies and recognition of the challenges around mental health that people with narcolepsy experience. It is imperative that the psychosocial educational and economic impact of the disorder is recognized inside the doctor’s office with a view to addressing the complexities of the condition.” To learn more visit wakeupnarcolepsy.org 27 | healthiersleepmag.com

UPCOMING WORLD SLEEP MEETINGS For information visit WORLDSLEEPCONGRESS.COM

MISSION

The mission of World Sleep Society is to advance sleep health worldwide. World Sleep Society will fulfill this mission by promoting and encouraging education, research and patient care throughout the World, particularly in those parts of the world where the practice of sleep medicine is less developed.

OPERATING PROGRAMS

World Sleep Society developed the following programs that consist of promoting sleep education, awareness, and member services.

BEST OF SLEEP MEDICINE & RESEARCH BIENNIAL MEETING

• American Academy of Sleep Medicine (AASM)

• Indian Association of Surgeons for Sleep Apnoea

• ASEAN Sleep Federation

• Indian Sleep Disorders Association

• Asian Sleep Research Society • Asian Society of Slee Medicine • Australasian Sleep Association

• Austrian Sleep Research Association (ASRA)

International Sleep Disorder Specialist

EXAM PROVIDING SLEEP MEDICINE COMPETENCE

In an effort to increase global awareness of sleep issues, World Sleep Society has formed relationships with the following sleep societies or regional federations.

• Australasian Sleep Technologist Association

WSS

CONGRESS

ASSOCIATE SOCIETY MEMBERS

• Brazilian Sleep Society • British Sleep Society ANNUAL AWARENESS EVENT WITH CALL TO ACTION

• Bulgarian Association of Obstructive Sleep Apnea & Snoring • Canadian Sleep Society • Chinese Sleep Research Society • CMDASM -Chinese Medical Doctor Association Sleep Medicine Specialized Committee • Czech Sleep Research and Sleep Medicine Society

OFFICIAL JOURNAL OF WORLD SLEEP SOCIETY Official journal of World Sleep Society & International Pediatric Sleep Association

ENDOWMENT IN HONOR OF SLEEP PIONEER

PATIENT BASED HEALTHIER SLEEP MAGAZINE

• EURLSSG • European Academy of Dental Sleep Medicine (EADSM) • European Sleep Research Society • Federation of Latin American Sleep Societies

INTERNATIONAL SLEEP

GUIDELINES MENTORING & TRAINING SLEEP RESEARCH LEADERS

RECOMMENDATIONS FOR DIAGNOSIS & TREATMENT

ACCESSIBLE SLEEP TRAINING AROUND THE WORLD

• Integrated Sleep Medicine Society Japan (ISMSJ) • International Pediatric Sleep Association (IPSA) • International RLS Study Group • Israel Sleep Research Society • Italian Association of Sleep Medicine • Japanese Society of Sleep Research • Minnesota Sleep Society • Peruvian Association of Sleep Medicine (APEMES) • Portuguese Sleep Association • Romanian Association for Pediatric Sleep Disorders • Russian Society of Somnologists • Serbian Sleep Society • Sleep and Wakefulness Medicine Moroccan Federation • Sleep Research Society

• Finnish Sleep Research Society

• South East Asian Academy of Sleep Medicine

• French Society for Sleep Research and Sleep Medicine

• Taiwan Society of Sleep Medicine • Turkish Sleep Medicine Society

• Georgian Sleep Research and Sleep Medicine Society

• Vietnam Society of Sleep Medicine

• German Sleep Society • Hong Kong Society of Sleep Medicine

CONNECT WITH US

• Indian Society for Sleep Research

Five Reasons People Avoid Going to the Sleep Doctor We have heard it all before, the numerous reasons that are made as to why we are not prioritizing sleep. When people break a bone, they go to their doctor to have it assessed. Why is it any different for sleep? Broken sleep should also result in a doctor visit to determine the problem and to address it quickly before it begins to interfere in one’s daily living tasks. Forget the excuses. There is no substitute for good sleep and the positive impact it will have on your life and your health. If sleep is an issue, schedule an appointment with a sleep specialist to get it addressed and you will see the benefits of healthier sleep.

1 2 3 4 5

It’s Just Sleep (I will sleep when I die). This could not be any further from the truth. Research has shown that sleep deprivation leads to cardiovascular problems, drowsiness, depression, obesity, and even irritability to name a few. Sleep needs to be a priority in our lives. I have always slept like this (we are just a sleepy family). If you have become accustomed to feeling sleepy through the day due to your sleep issues at night, that is a problem. For some, they do not remember how great they felt with a good night’s rest, as they have turned sleepiness into their new norm. It is time to break that cycle. Everyone is sleepy, how is mine worse? We have all sat in the lounge room at work and discussed being tired or even exhausted. However, for many people, that is not their everyday feeling. If you are sleepy every day and it is affecting your work/life, there is a bigger issue that needs to be addressed. I am just stressed. While stress can be a catalyst for poor sleep, it is important to speak with your healthcare providers to address the underlying cause. If your sleep issues are due to stress, then the stress should be addressed. I work hard and play hard. It is important to maintain a healthy balance in life. Our days should not consist of all work and no play, nor should they consist of all play and no work. However, part of maintaining that healthy balance is also making sure you are getting enough sleep at night to be able to live your life to the fullest. Making sleep an afterthought will catch up with you as we must allow our bodies the opportunity to disconnect and heal.

29 | healthiersleepmag.com

Preparing for a Sleep Study By Rosei Skipper, MD

oing to the doctor can be daunting, but have you ever gone to the doctor and tried to fall asleep? If you or your family member ever need a sleep study, that’s exactly what you will do. Doctors order sleep studies when a patient complains of daytime sleepiness, poor sleep at night, unusual movements or dreams during sleep, and sometimes for behavior issues in children. These studies will help your doctor determine what is causing your symptoms. Polysomnography, also known as a sleep study or PSG, is an overnight test that is used to diagnose sleep disorders. During the night the technicians will record many parameters including: brain waves, heart rate, and breathing. They will also monitor the oxygen levels in your blood, track your eye and leg movements, and see how long you stay asleep.

30 | Autumn 2021 | Daytime Sleepiness

In some cases, your doctor will also order something called a multiple sleep latency test or an MSLT. An MSLT can only be conducted on the day after a sleep study because the doctor needs to be certain that you got enough sleep the night before. During the test, you will be given multiple opportunities to doze off. The number of times you fall asleep is noted as well as the time that it takes you to fall asleep. Your brain waves are also recorded in order to measure how quickly you enter REM sleep. The doctor will use all the information from these studies to determine what is causing your symptoms.

Having an accurate diagnosis will be well worth the time you take to prepare for your tests.

WHEN WOULD A DOCTOR REQUEST THESE STUDIES? Dr. Carey Lockhart, is a pediatric sleep specialist at Seattle Children’s Hospital. Dr. Lockhart sees a variety of children with sleep disorders, and she is particularly interested in the diagnosis and management of narcolepsy and other central Dr. Carey Lockhart hypersomnias. According to Dr. Lockhart, sleep studies are ordered when a patient complains of being excessively sleepy during the day, not sleeping well at night, or having problems such as excessive movement or snoring. Since many different conditions can cause daytime sleepiness, it is important for your doctor to understand the underlying cause of your symptoms before they can recommend the correct treatment. Excessive daytime sleepiness can look different in children versus adults. Whereas adults might find themselves nodding off while reading, sitting quietly, or even driving, children can actually look hyperactive, moody, and impulsive. In fact, Dr. Lockhhart says that many children with a diagnosis of ADHD may actually be showing sleep deprivation! Because of this, “It is important to investigate symptoms of inattention and behavioral issues thoroughly.”

WHAT MIGHT THE DOCTOR FIND? Although the primary purpose of an MSLT is to diagnose disorders of central hypersomnolence, such as narcolepsy, other disorders are much more common. According to Dr. Lockhart, both children and adults can suffer from obstructive sleep apnea (OSA), and the disorder “has gotten more common in children.” Children with OSA may or may not snore but frequently have large tonsils. If your overnight sleep study shows that OSA is causing your daytime sleepiness, you will not need an MSLT. HOW SHOULD YOU PREPARE FOR YOUR SLEEP TESTING? Your doctor will ask you to start preparing for your tests a few weeks ahead of time. Dr. Lockhart says that it is important for patients to try to have a consistent sleep schedule before their test, to keep a sleep diary, and to cut back or eliminate caffeine. Certain drugs interfere with deep sleep so your doctor will carefully review any medications and supplements that you take and help you to wean off of them temporarily if needed. Your doctor may also have you wear a special device to measure your movement, also called an actigraphy, and they may have you keep a diary noting your sleep patterns, energy level, etc. It is important that you prepare for your test so the results will be most accurate. Many people worry that they will not be able to sleep during the sleep study, but Dr. Lockhart says that most patients do just fine. Even kids usually sleep easily especially when they have been prepared for the testing. Having an accurate diagnosis will be well worth the time you take to prepare for your tests. ................................................................................. Rosei Skipper, MD completed her Psychiatry residency and Child fellowship at the Mayo Clinic in Rochester, MN. She is currently pursuing further training in psychoanalytic therapy.

31 | healthiersleepmag.com

Ask the Sleep Doc

As answered by our issue reviewers. Lourdes DelRosso, MD

Melissa C. Lipford, MD

Robert J. Thomas, MD

Rochelle Zak, MD

32 | Autumn 2021 | Daytime Sleepiness

Q: What should I do if I am still tired after sleeping the recommended hours of sleep? Dr. DelRosso: The recommended amount of sleep per age group is determined by taking the average of the sleep requirements of the general population. In this sense some people may require a little longer sleep. You may try to go to bed a little earlier or try to sleep in and see how you feel. If you still feel tired and have a bed partner, ask if there are any symptoms that are disrupting the quality of your sleep, such as snoring, leg kicking, or grinding your teeth. A visit with a sleep specialist may be recommended.  Dr. Lipford: Most adults need 7-8 hours of sleep nightly to feel rested. If you still feel tired despite getting the recommended number of hours of sleep, it could mean there is a

problem with the quality of your sleep. Some steps that can improve sleep quality include avoiding alcohol and caffeine late in the day, avoiding digital devices before bedtime, and sticking to a regular sleep/wake schedule all days of the week. If you are still tired despite these suggestions, check in with your doctor.  Your doctor can evaluate you for sleep disorders that can disrupt sleep and prevent you from getting deep, restful sleep. Your doctor can also screen you for other medical disorders that may result in daytime tiredness. Dr. Zak:  As wonderful as it is to have a recommended number of hours of sleep, it does not apply universally and is only a guide. You need the amount of sleep you need to feel rested so if you are tired during the day, do try to increase your total sleep time–either at night or by adding

planned naps. If you are going to nap, try to limit the nap to 20 to 30 minutes so that the nap can be refreshing. Sometimes taking a longer nap can paradoxically be less refreshing if you enter "deep sleep", you can have a feeling of "sleep drunkenness" and feeling as if you have not slept. If after maximizing total sleep times you still do not feel refreshed, then discuss with a healthcare professional whether you might require further work-up for causes of poor-quality sleep as evidenced by snoring or leg kicking which could suggest an underlying sleep disorder. Dr. Thomas: Persistent exhaustion despite apparently adequate number of hours at night means one of three things: that the sleep duration is not sufficient (there is a range of natural requirements, and some individuals need 9 to 10 hours sleep); there is sleep pathology (sleep apnea, etc.), or a third condition which causes exhaustion regardless of the quality of sleep (e.g., multiple sclerosis, chronic fatigue syndrome, idiopathic hypersomnia). It may be hard to differentiate sleepiness from fatigue, but sleepiness is somewhat easier to diagnose and treat. Thus, a trip to a sleep specialist is likely called for.

Q: Can heavy exercise interfere with sleep? Dr. Thomas: Exercise in the evening can improve sleep quality but not when close to bedtime. Exercising late in the evening under bright light (a typical gym) is a recipe for trouble falling asleep. Dr. DelRosso: Studies have shown that exercise during the day helps sleep but exercise too close to bedtime can actually delay sleep. I usually recommend exercising earlier in the day to mid-afternoon. Dr. Lipford: Exercise is an important part of a healthy lifestyle. A regular exercise regimen can be very conducive to restful sleep. However, a strenuous workout close to bedtime, may make it difficult to fall asleep. Consider scheduling highintensity exercise in the morning or afternoon. Light to moderate intensity activities such as walking, yoga, or stretching are generally ok closer to bedtime. Each individual may have a different response to exercise, so it may take some trial and error to figure out the best time for your exercise routine.

Dr. Zak:  Great question because it emphasizes, as above, the need to figure out what is best for your body and brain. Generally, it is felt that exercise in the evening can have a negative effect on sleep so we recommend exercising earlier in the day. There are individuals for whom the opposite is true, and you can see what works for you. Many people find that stretching prior to sleep can be a useful way of engaging the body in part of the wind-down routine without increasing wake-promoting chemicals, such as adrenaline.

Q: How is sleep impacted by health issues like depression and heart disease? Dr. Zak:  People are complex, so, yes, health issues can definitely have a negative impact on sleep continuity and quality and ironically so can the medications used to treat these conditions. Thus, as clinicians, we try to identify if the health issue or its treatment could be having a negative impact and to walk that difficult line of trying to keep people healthy and functioning in all domains. Dr. Thomas: Sleep is often severely impacted. Insomnia is more common than hypersomnia (sleeping too long) in depression. Heart failure usually causes insomnia, in part from sleep apnea, which is very common in those with heart failure.

Ask the Doc continued on page 34 33 | healthiersleepmag.com

Ask the Doc continued from 33

Q: Is it normal to wake up but not be able to move? Dr. DelRosso: This is called sleep paralysis; it usually occurs when you wake up in the middle of a sleep stage called REM. During this sleep stage your body is in a state of “paralysis.” This can occur in states of sleep deprivation so a first recommendation is to obtain an adequate amount of sleep. If it persists and occurs frequently or in association with other symptoms, we recommend being evaluated by a sleep physician. Dr. Zak:  You may have sleep paralysis. To understand sleep paralysis, you need to understand the physiology of REM or "dreaming" sleep. During REM sleep, most of the body is paralyzed (although obviously not all of it since "REM" does stand for "rapid eye movement" so the eyes are moving and your diaphragm, the base of your lungs, is moving) --particularly the arms and legs. Sleep paralysis occurs upon awakening from REM sleep while maintaining that REM-related paralysis for a short period of time. It can be very scary and some people feel as if they cannot breathe--as if there is "an old hag" sitting on their chest--because some of the muscles usually used to breathe are also paralyzed but luckily not all so you are breathing-it just feels different. As you have

probably figured out, this feeling will spontaneously resolve and it often runs in families (ask your parents!) It is more likely to occur when you are getting recovery sleep from prior sleep deprivation and, for some reason, is also more common when sleeping on the back so try to get adequate sleep nightly and, if necessary, sleep on the side. There are medications that can prevent it, but for most people it occurs rarely enough that it is not worth taking a daily medication.

Q: What can I do to get my child to wake up early to go to school?  Dr. DelRosso: The best situation is to have a bedtime that allows for an adequate amount of sleep at night. For example, a ten-year-old requires on average 10 hours of sleep at night. If wake up time is 7 am, the child must be asleep by 9 PM. Ensuring an adequate amount of sleep will ensure an energetic morning awakening. If your child snores or has any other potential disruptor of sleep quality such as frequent movements, kicks, or nocturnal awakenings, it may be beneficial to consult a sleep specialist.

Dr. Lipford: Most families face at least a few struggles this time of year when transitioning to the fall school schedule. It is important for children to obtain enough sleep nightly so they can wake up feeling rested and can stay energized and focused throughout the day. While adults typically need 7-8 hours of sleep nightly, children need more sleep. You may need to move your child’s bedtime earlier to ensure they are getting enough sleep and to make it easier for them to awaken. Creating a pleasant, calming bedtime routine can help children relax and fall asleep more quickly. Similarly, an energetic morning routine, with some moments of fun built in will make it easier for kids to get up and moving in the morning. If your child still struggles with getting up in the morning or seems to be low on energy during the day, check in with your doctor or consult with a sleep specialist.

HAVE A QUESTION FOR THE SLEEP DOCS? Submit your questions by email to healthiersleep@worldsleepsociety.org. Questions are selected based on space & applicability.

34 | Autumn 2021 | Daytime Sleepiness

2021-2022 EDITORIAL CALENDAR BETTER SLEEP

SNORING & OSA

RLS

• Restless Legs Syndrome • Periodic limb movement disorder • Alzheimer’s disease • Parkinson’s disease • Sleep & sports performance & injury

SUMMER 2022

SPRING 2022

WINTER 2021-22

• • • • •

Sleep Breathing Disorder Bruxism or teeth grinding Sleep & Memory CPAP Sleep & women (pregnancy to menopause)

• • • • •

Sleep disorder treatments Expert recommendations World Sleep Day Sleep & health outcomes Mental health & sleep

AUTUMN 2022

FUTURE OF SLEEP

• Artificial intelligence in sleep • Sleep technology • Tele medicine • Treatment projections

HAVE IDEAS FOR FUTURE ISSUES?

Submit your ideas to healthiersleep@worldsleepsociety.org

IN EVERY ISSUE The BuZZZ about Sleep

Right Now in Sleep Science

ABOUT HEALTHIER SLEEP MAGAZINE

Bedtime Reads

Ask the Sleep Doc

Healthier Sleep is published five times per year by World Sleep Society. World Sleep Society is a membership organization for professionals working in the field of sleep medicine and research with a mission to advance sleep health worldwide. Welcome to Healthier Sleep.

CONTACT US For more information, visit healthiersleepmag.com For a custom quote, contact healthiersleep@worldsleepsociety.org

HEALTHIER SLEEP MAGAZINE 3270 19th Street NW, Suite 109 Rochester, MN 55901 USA

rld Sleep Day

Hosted by World Sleep Society

MARCH 18, 2022

45+ COUNTRIES 200+ ACTIVITIES

ABOUT World Sleep Day is an annual event intended to be a CELEBRATION OF SLEEP and a call to action on important issues related to sleep. Hosted by World Sleep Society, it is an opportunity for sleep experts to inform the public about the importance of sleep in all aspects of health.

worldsleepday.org

SAVE THE DATE

Dozens of delegates in countries around the world participated in World Sleep Day 2021, holding in-person, online, and media events that promoted the theme of “REGULAR SLEEP, HEALTHY FUTURE.”

twitter.com/_WorldSleep

facebook.com/wasmf

SAVE THE DATE The next World Sleep Day is FRIDAY, MARCH 18, 2022. Sign up for updates at worldsleepday.org to follow the latest developments regarding the annual theme and activities.

Healthier Sleep Magazine | Autumn 2021 | Daytime Sleepiness

Articles inside

Ask the Sleep Doc

Preparing for a Sleep Study

Five Reasons People Avoid Going to the Sleep Doctor

PATIENT ORGANIZATION HIGHLIGHTS

Right Now in Sleep Science

Co-Morbidities Associated with Narcolepsy

Bedtime Reads

When the Doctor has a Sleeping Problem too

Sleep in the Spotlight

The BuZZZ about Sleep

CBT For Hypersomnias

Current Treatments & Medications on the Horizon

How To Identify if Sleepiness is an Issue

Bedtime Reads

Insufficient Sleep Syndrome

Excessive Daytime Sleepiness

The Science of a Good Night’s Sleep