Hypersomnia Foundation

Dr. Lynn Marie Trotti Presents at AAN Annual Meeting

AAN is the American Academy of Neurology and the meeting was held in Boston, MA, April 22-28, 2017. The AAN Annual Meeting is the world’s largest gathering of neurologists, bringing together more than 10,000 neurology professionals across the globe, to network, discuss cutting-edge research, and take part in top-rated education programming across a wide variety of topics.

 

Dr. Lynn Marie Trotti gave two talks related to hypersomnia at the AAN meeting:

Narcolepsy and Hypersomnia Cases for the General Neurologist”, in a session called “Approaching the Management of Common Sleep Disorders: Case-based Review for the Non-sleep Specialist”

“Stuck in the MSLT: Challenges in Diagnosing and Treating the Other Central Disorders of Hypersomnolence”, “Sleep for the Practicing Neurologist I: Is it Narcolepsy or Something Else? Diagnostic and Management Challenges in the Central Disorders of Hypersomnolence”

 

Both are designed for neurologists who are not sleep specialists but who may encounter patients with hypersomnia.

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Caring for Your Dental Health

Caring for Your Dental Health

Did you know? Some stimulants can have dental side effects.

by Sheri Katz, D.D.S., Diplomate, American Board of Dental Sleep Medicine

Stimulants are often prescribed for the treatment of hypersomnia because they act to target the nervous system to increase wakefulness. This includes medications such as Adderall, Vyvance and Ritalin.

Most people are aware that stimulants can have various side effects but may not be familiar with dental side effects.

People taking stimulants may notice bruxism (teeth grinding and clenching) and a decrease in saliva, resulting in dry mouth (called xerostomia). These side effects do not affect everyone, but for those who find them bothersome, there are ways to manage these problems.

First, an explanation of how saliva is produced and why it’s important to dental health: saliva is a fluid secreted by four pairs of glands located between the ear and jaw, under the tongue and under the jaw. It serves several vital functions:

1. Saliva contains enzymes that function in the initial stages of digestion.

2. Saliva contains minerals that neutralize the acids produced by bacteria in dental plaque. These minerals also help to repair early tooth damage.

3. Saliva keeps your mouth moist and comfortable. It also aids in the process of tasting and swallowing and washes food off the teeth after eating.

A person with dry mouth produces less saliva and may notice an increase in temperature and sweet sensitivity. Dry mouth may also cause an increased accumulation of plaque, white spots on tooth enamel (demineralization) and an increase in tooth decay. People with dry mouth may also experience dry lips, inflammation and crusting at the corners of the mouth, unspecific gum irritations, and a painful or burning mouth. Additionally, there may be complaints of halitosis (bad breath) and an altered sense of taste.

Dry mouth (xerostomia) may be managed in the following ways:

1. Using artificial saliva products (such as sprays) which can help moisten the tissues and lessen the discomfort of dry mouth (these do not require a prescription and may be found on drugstore shelves)

2. Chewing sugar free gum or sucking on sugar free hard candy, which can increase salivary flow

3. Applying fluoride regularly through your dentist or by prescription which will protect the teeth by:

● strengthening the enamel and making teeth more impervious to acid

● keeping bacteria from multiplying

● decreasing the ability of the bacteria to adhere to teeth

4. Stopping smoking and all tobacco use

5. Limiting caffeine

6. Avoiding use of mouthwashes that contain alcohol

7. adding humidification at night

8. Making sure you are breathing through your nose and not your mouth, if at all possible

9. Speaking with your prescribing physician about changing dosages or exploring other medications that do not have dry mouth as a side-effect

Clenching and/or grinding the teeth, usually at night (Bruxism)

The causes of this disorder vary and are often unknown, but there are links between bruxism and smoking, alcohol, caffeine, illicit drug use and many prescribed medications, including stimulants.

Mild bruxism may require no treatment, but if severe, can cause headaches, jaw pain (pain in the temporomandibular joint, a condition also known as TMJ) and damage to the teeth and dental restorations.

Treatment for clenching and grinding may include:

1. Getting counseling on relaxation

2. Making lifestyle changes (quitting smoking, alcohol)

3. Using mouthguards (occlusal splints), made by the dentist and worn at night to protect the teeth and remove pressure from the joint

4. Asking your dentist about orthodontia and bite adjustments — these have been used to treat bruxism; however they are irreversible, and there is no high quality evidence to support these techniques

5. Again, speaking about the dosage and type of medication with your doctor; together you can decide if the effects of the medication outweigh the discomfort of the side effects

Sources:

1. Plemons JM, Al-Hashimi I, Marek CL; Managing dry mouth and salivary gland hypofunction. Executive summary of a report American Dental Association Council on Scientific Affairs..

J Am Dent Assoc. 2014 Aug;145(8):867-73. doi: 10.14219/jada.2014.44.

2. Sessle, Lavigne, et.al, Orofacial Pain:2 nd ed.,214-215.

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Monica Gow of Wake Up Narcolepsy joins HF’s Regional Conference

The Hypersomnia Foundation is pleased to announce that Monica Gow, co-founder and former executive director of Wake Up Narcolepsy is joining the list of presenters at HF’s Regional Conference in Boston on June 4th.

Monica Gow is a co-founder and former executive director of Wake Up Narcolepsy (WUN).  In 2008, when her son, Thomas, was diagnosed with narcolepsy, Monica and her husband, David, co-founded WUN to increase narcolepsy awareness, education and accelerate research.  In October 2016, Monica moved from the role of executive director to a member of the WUN Board of Directors.   Under Monica’s leadership, WUN quickly moved from a local nonprofit organization to a recognized national and international organization offering a trusted resource for physicians, people with narcolepsy, their families and other agencies in the sleep space.  She has been the WUN Boston Marathon team captain for eight years and personally completed the Boston Marathon four times for Wake Up Narcolepsy, exceeding her fundraising goal each time.  She has two other children, Caroline and Joe, who have been involved with the organization since inception.  Prior to serving the narcolepsy community, Monica gained ten years of work experience in the insurance field in companies such as The Paul Revere Insurance Companies and Tufts Associated Health Plan, and is a certified elementary teacher.  Monica’s mission will always be to improve the lives of people living with narcolepsy.

The title of Monica’s talk: The Importance of Participating In a Registry

Speakers already scheduled include Dr. Lynn Marie Trotti of Emory University and Georgia disability attorney Anjel Burgess. Dr. Trotti will provide a clinical update on the field of IH, and the CoRDS patient registry. Ms. Burgess will discuss how workers with IH should prepare to “Stay Ahead of IH” on the job. In addition, HF Board Member Celia King will moderate a discussion on managing IH at college featuring Mary King, EdD, and two college students, Olivia G. Robbins and Jessamine Griewahn-Okita. Kate Kaplan, PhD of Stanford University will review ways that therapy can help individuals with hypersomnia manage symptoms and lead active, full lives.

The conference takes place in Boston on Sunday, June 4th in the Johnson Building of the Boston Public Library, Rabb Lecture Hall, from 12:30 – 4:30 p.m. Optional social event planned for Saturday June 3rd include a trolley tour of the city (tickets $25) and a casual “meet and greet” evening.

The conference is free, and can also be viewed via livestream.

For more information, and to register for the conference or the livestream: http://www.hypersomniafoundation.org/2017hfrc/

For tickets to the sight-seeing trolley tour on June 3rd: Get Tickets Now

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Dr. Kate Kaplan of Stanford joins HF’s Regional Conference

The Hypersomnia Foundation is pleased to announce that Dr. Kate Kaplan, a clinical psychologist and sleep researcher at Stanford University is joining the list of presenters at HF’s Regional Conference in Boston on June 4th.

Dr. Kaplan will review ways that therapy can help individuals with hypersomnia manage symptoms and lead active, full lives. Dr. Kaplan practices behavioral sleep medicine and works frequently with individuals who have hypersomnia.

Dr. Kaplan is on the clinical faculty in the Psychiatry Department at Stanford University. Dr. Kaplan received her B.A. and M.A. from Stanford University and completed a Ph.D. at the University of California Berkeley, where she focused on hypersomnia co-occurring with psychiatric disorders. Dr. Kaplan returned to Stanford for clinical and research fellowships with an emphasis on sleep and sleep disorders. She has published in areas related to hypersomolence, sleep inertia and sleep treatments.

Speakers already scheduled include Dr. Lynn Marie Trotti of Emory University and Georgia disability attorney Anjel Burgess. Dr. Trotti will provide a clinical update on the field of IH, and the CoRDS patient registry. Ms. Burgess will discuss how workers with IH should prepare to “Stay Ahead of IH” on the job. In addition, HF Board Member Celia King will moderate a discussion on managing IH at college featuring Mary King, EdD, and two college students, Olivia G. Robbins and Jessamine Griewahn-Okita.

The conference takes place in Boston on Sunday, June 4th in the Johnson Building of the Boston Public Library, Rabb Lecture Hall, from 12:30 – 4:30 p.m. Optional social event planned for Saturday June 3rd include a trolley tour of the city (tickets $25) and a casual “meet and greet” evening.

The conference is free, and can also be viewed via livestream.

For more information, and to register for the conference or the livestream: http://www.hypersomniafoundation.org/2017hfrc/

For tickets to the sight-seeing trolley tour on June 3rd: Get Tickets Now

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Let Sleep Researchers Know What’s Important to YOU

HF urges the entire hypersomnia community, including people with IH, people with narcolepsy, all supporters and healthcare professionals, to take a short survey prepared by Project Sleep in partnership with the University of Arizona “to capture perspectives of the narcolepsy and hypersomnia community.”

Julie Flygare of Project Sleep notes, “…we hope it will be useful to help illustrate to the sleep researchers what PATIENTS’ research priorities are and how they may differ from their preconceived notions of what’s important – and hopefully spark some new collaborations between patient leaders and organizations and researchers.”

After we posted the link on our HF Facebook page, followers weighed in on the survey, commenting that it takes only about ten minutes to complete. Note that the deadline for completing the survey is May 17th.

To read more, and to take the survey:

http://project-sleep.com/narcolepsy-research-survey/

Posted in: narcolepsy, Research

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Dear Abby Misses the Mark on IH

A “Dear Abby” advice column was recently forwarded to us by Noelle, a member of the hypersomnia community. In a letter to Abby, a mother in New Jersey asked what to do about her teenaged son’s complete inability to get himself up for school in the morning. She said he is a responsible boy in every other way, but she fears he won’t be able to get to class when he starts college this fall. Unfortunately, Abby’s advice reflects the widespread lack of awareness of sleep disorders. But we viewed it as a golden opportunity to educate “Abby,” the public, and we hope, the mother of that young man.

The Hypersomnia Foundation, working with Dr. David Rye of Emory University, co-wrote and submitted a reply which we hope will be published. We have not yet heard back from the writers of “Dear Abby,” but we’ve decided to share the story here, in hopes that you will share it, too. (We did manage to get our letter posted on the Abby Facebook page.) Below is a link to the original letter, followed by our response. (Warning: Many readers will find the original letter and the Abby reply upsetting. We certainly did.) Our thanks to Noelle for bringing this to our attention.

The original column:

http://www.pressdemocrat.com/lifestyle/6726470-181/dear-abby-mom-cant-get

Dear Abby: Mom can’t get teen to wake up on his own
JEANNE PHILLIPS
DEAR ABBY | March 11, 2017

Dear Abby: My son “Jake” is headed to college in the fall, and I want his last year at home to be memorable and happy. He’s a good student and has been admitted to the college of his choice. The problem is, he can’t wake himself up in the morning. He switches off the alarm and goes back to sleep. I must go up to his room several times to wake him because he won’t get up the first time.

Jake is otherwise independent. He does his own laundry and keeps his room spotless. I’m spending a large part of my savings on his tuition, and I’m worried that unless he can wake himself in the mornings, he won’t get to classes on time.

I have tried talking to him about putting the alarm on “snooze” instead of turning it off, but nothing works. My husband suggests we pour a glass of cold water on Jake’s face 10 minutes after the alarm goes off. Can you help us solve this problem?

— Up Already in New Jersey

Dear Up: Although you may think your husband’s suggestion is harsh and inappropriate, it’s time you stopped coddling your son. The two of you need to sit him down and tell him that college is expensive, that if you and your husband are willing to go through the financial hardship of paying for it, he must wake up by himself and if he cannot manage to do that, he will have to pay for his own education. Perhaps that will get across to him that you are serious.

Our reply to “Abby”:

March 22, 2017

Dear Abby,

As soon as we read your reply to “Up Already in New Jersey,” we were compelled to respond. A mother wrote to you about her teenaged son, a good student and responsible young man, concerned that his inability to awaken in the morning would prevent him coping with the demands of college. You scolded her for coddling him, and didn’t disagree with her husband’s suggestion that she consider throwing cold water in her son’s face.

Abby, difficulty waking up may be a signal of serious medical conditions (e.g., low thyroid hormone levels, iron deficiency with or without anemia, and others). It may also be a symptom of certain poorly recognized primary sleep disorders. While adolescents have a natural propensity towards being “night owls,” long and unrefreshing sleep can be an indication of a more serious neurological disorder such as idiopathic hypersomnia or narcolepsy. The inability to awaken to a standard alarm is, for instance, one of the hallmark symptoms of idiopathic hypersomnia. Affected individuals will often resort to ‘sonic-boom’ alarms and other extraordinary means to awaken. Other symptoms may include disorientation after awakening, grogginess, ‘brain fog’ and an inability to remain alert during the day. That concerned mother would be well advised to seek the opinion of a board certified sleep medicine physician.

In a society where feeling tired is increasingly expected, and accepted, people with sleep disorders are often mistaken as unmotivated or lazy. It is truly heartbreaking how many people with a sleep disorder suffer for years before getting a proper diagnosis. If this mom’s teen has a medical or (un)recognized sleep disorder, throwing cold water in his face will not help. New Jersey mom’s son will need his parents’ guidance to sort out how to best evaluate and manage a condition that might affect his schooling, his work, and his relationships. New Jersey mom may also want to view online – free of charge – a discussion panel led by two students who have successfully navigated college with their diagnoses of idiopathic hypersomnia. It’s scheduled as a live webcast on June 4th, as part of the Hypersomnia Foundation’s conference in Boston, MA – anyone can go to www.hypersomniafoundation.org to register.

Sincerely,

Diane Powell, LCSW
CEO / Board Chair
The Hypersomnia Foundation

David B. Rye M.D., Ph.D.
Professor of Neurology, Emory University School of Medicine
Chair, Scientific Advisory Board Hypersomnia Foundation

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HF Board Member featured as guest on Top Docs Radio!

Hypersomnia Foundation’s Catherine Page-Rye will be live on Top Docs Radio, Tuesday April 18 at noon EDT.

Cat aims to promote awareness and better understanding of idiopathic hypersomnia (IH) as a rarely diagnosed, often misunderstood, serious neurological sleep disorder. She will discuss various topics with the moderator including:

• Distinguishing between the terms idiopathic hypersomnia (IH) and hypersomnia
• Classifications of hypersomnia
• Symptoms of IH
• Diagnosis and treatments of IH
• Hypersomnia Foundation programs for awareness, education and research aligning with
their slogan “Let’s get #BeyondSleepy.”

Plan to tune in via the internet using the following link and on the top right click ”listen” (do not click “select a studio”):

http://topdocs.businessradiox.com/

The show will also be archived and accessible via the above link thereafter.

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World Sleep Day: Battling the Symptoms of Idiopathic Hypersomnia

 

 

World Sleep Day, an annual event, is a call to action by delegates from around the world to raise awareness about the many burdens of sleep problems and their prevention and management. This year WSD falls on Friday, March 17, 2017, and the slogan is “Sleep Soundly, Nurture Life.”

While this slogan aligns with many sleep disorders that are modifiable and manageable with the help of a sleep specialist encouraging good health, exercise and proper diet, there is unfortunately a class of central disorders of hypersomnolence (CDH), including idiopathic hypersomnia (IH), that is especially complex and more difficult to diagnose and treat.

On this World Sleep Day 2017, the Hypersomnia Foundation is working to raise awareness about IH, a chronic and often debilitating neurologic disorder, by releasing a summary of a recent review article about CDH. This summary is intended to make current research about these disorders more accessible to the public, and it is part of an ongoing series of journal article summaries provided by the Hypersomnia Foundation to increase awareness of IH and the related CDH.

Read the Article Review Here!

In a society where feeling tired is the norm, it can be difficult to comprehend the devastating impact of a malady in part defined by excessive daytime sleepiness. For people with idiopathic hypersomnia, a full night’s slumber has no effect on easing the insatiable need to sleep. The associated severe sleep inertia and mental fogginess make it extremely difficult for people with IH to hold down jobs, remain in school, maintain marriages, and fully engage with their family and friends.

As one person with IH insightfully described it, “I am like a soldier on a daily mission; I fight to stay awake and alert, but I lose the battle and retreat to bed.” The Hypersomnia Foundation is working to help those with IH win more battles. Together, let’s get #beyondsleepy!

 

A Short Bio of the HF

The Hypersomnia Foundation, Inc. (HF), established in 2014 as a public nonprofit in the USA, received its IRS 501(c)3 determination letter that same year. As an all-volunteer organization, the HF uses 100% of donated funds to support its mission of improving the lives of people with idiopathic hypersomnia (IH) and related disorders by advocating on their behalf, providing support, educating the public and healthcare professionals, raising awareness, and funding research into effective treatments, better diagnostic tools, and, ultimately, cures for the debilitating conditions that comprise IH.

The reach of the HF is international, although the vast majority of our constituents are in the United States. Presently there is a serious unmet clinical need for people with hypersomnia (PWH). Not only are approved or even universally effective treatments not available, but lack of recognition that the symptoms of hypersomnia comprise a neurologic sleep disorder leads to a delay in diagnosis and years of needless suffering. As one prominent sleep researcher recently said, “People with hypersomnia are the most underserved population in the entire sleep community. They are veritable orphans, lacking even the most basic needs of recognition, let alone validated diagnostic tools and effective treatment.” The emotional, vocational and financial implications of the undiagnosed and untreated physical symptoms can have a disabling impact. The HF was established to address these issues.

HF core beliefs include the following:

• All PWH deserve full and proper diagnosis and treatment.
• Optimal diagnosis and treatment derive from better knowledge.
• All of the causes of hypersomnia can be discovered and properly treated.

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Article Review: Khan Z, Trotti LM. “Central Disorders of Hypersomnolence: Focus on the Narcolepsies and Idiopathic Hypersomnia.”

 

HF FOUNDATION - OverlapArtboard 3

 

This article reviews three central disorders of hypersomnolence (CDH), which include narcolepsy type 1, narcolepsy type 2, and idiopathic hypersomnia. The main symptom patients experience in all three of these disorders is excessive daytime sleepiness (EDS), which cannot be explained by other medical conditions or by not getting enough sleep.

Article: Khan Z, Trotti LM. “Central Disorders of Hypersomnolence: Focus on the Narcolepsies and Idiopathic Hypersomnia.” Chest. 2015 Jul;148(1):262-73. doi: 10.1378/chest.14-1304.
Link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4694150/pdf/chest_148_1_262.pdf
Note: Terms in italics are defined in the glossary below.

 

Symptoms (See Table)

Even though the names for narcolepsy type 1 and narcolepsy type 2 sound similar, they are now thought to be quite different disorders. Narcolepsy types 1 and 2, as well as idiopathic hypersomnia, show overlapping symptoms. Nearly all patients with narcolepsy type 1 experience cataplexy (the sudden loss of muscle tone in response to a strong emotion, often when hearing or saying something funny). These patients have difficulty with not only staying awake during the day but also with staying asleep during the night. It is also very common for patients with narcolepsy type 1 to experience sleep paralysis and hallucinations.

On the other hand, patients with narcolepsy type 2 do not experience cataplexy, but also have difficulty with daytime wakefulness. Just as in narcolepsy type 1, it is also common for patients with narcolepsy type 2 to experience sleep paralysis and hallucinations.

Patients with idiopathic hypersomnia have difficulty with daytime wakefulness, and they do not experience cataplexy.  Conversely, to narcolepsy type 1, patients with idiopathic hypersomnia do not have problems with staying asleep during the night and only sometimes experience sleep paralysis and hallucinations. They also commonly experience sleep drunkenness.

 

Prevalence and Pathophysiology (Contributing Factors)

The prevalence of narcolepsy type 1 is 0.025-0.05% of the world’s population, whereas the prevalence of idiopathic hypersomnia is not presently known. Both narcolepsy and idiopathic hypersomnia usually first occur when patients are in their teens to 30s.

Patients with narcolepsy type 1 have low levels of hypocretin (also called orexin). Hypocretin is a substance produced in the brain that is involved in regulating many processes, including sleep, feeding, stress response, and reward. These low hypocretin levels are probably due to both environmental exposure and inherited genetic factors. Getting an infection may also cause narcolepsy to develop. For example, narcolepsy became three times more common in China after an outbreak of the H1N1 flu virus.

Although several studies have investigated factors that may contribute to the development of narcolepsy type 2 and idiopathic hypersomnia, it is currently unknown whether environmental exposures or genetic factors contribute to these disorders.

 

Diagnosis

Three months of EDS symptoms are necessary for a diagnosis of all three central disorders of hypersomnolence. For narcolepsy type 1 to be diagnosed, the patient must show either or both of the following: (1) they must have cataplexy, fall asleep in an average of eight minutes or less during naps on a daytime sleep study (MSLT), and enter into rapid eye movement (REM) sleep for at least two out of five naps during this sleep study, and/or (2) have low hypocretin levels.

For narcolepsy type 2 to be diagnosed, patients must also fall asleep in an average of eight minutes or less and enter into rapid eye movement (REM) sleep for at least two out of five naps during the MSLT. They must also not have cataplexy, have normal (or unknown) hypocretin levels, and their symptoms must not be explained by any other causes.

For the diagnosis of idiopathic hypersomnia to be made, patients must not have cataplexy, must enter into REM sleep fewer than two out of five naps during the MSLT, and their symptoms must not be explained by any other causes. Additionally, they also must show either or both of the following: (1) they must fall asleep in an average of eight minutes or less during the MSLT, and/or (2) they must sleep at least 660 minutes (11 hours) per day (either in a 24 hours sleep study or in a week of at-home monitoring).

 

Treatment and Conclusions

The main goal of treating patients with all three central disorders of hypersomnolence (narcolepsy types 1 and 2 and idiopathic hypersomnia) is to relieve EDS. There are several medications approved by the US Food and Drug Administration (FDA) to treat narcolepsy. There are none, however, approved by the FDA to treat idiopathic hypersomnia, so the medications approved for narcolepsy are often used “off-label” to treat these patients.

One of these medications, modafinil, has been shown to help patients with idiopathic hypersomnia. Modafinil is unlikely to be abused, but it can cause several unpleasant side effects, like headaches and nausea. Other medications used to treat the central disorders of hypersomnolence include amphetamine stimulants, such as methylphenidate (Ritalin) and dextroamphetamine. These can also help decrease EDS, but they have associated cardiovascular and psychiatric side effects. Several other medications are also used to treat the central disorders of hypersomnolence (including sodium oxybate and antidepressants), and other new therapies are currently being developed.

Further studies are necessary to develop better diagnostic tests and treatment, especially for patients who do not respond well to medication. Additional research is also important to better understand the underlying causes of these disorders.

 

Glossary:

Excessive Daytime Sleepiness (EDS): ““The inability to stay awake and alert during major waking episodes of the day, resulting in periods of irrepressible need for sleep or unintended lapses into drowsiness or sleep.” (1)

Sleep drunkenness: “A prolonged state after awakening in which motor functions return before full awareness or there is partial return of both.” (1)

Rapid eye movement (REM) sleep: “One of the four stages of sleep. During REM sleep, the eyes move rapidly while closed and dreams occur (2).”

MSLT: The multiple sleep latency test (MSLT) measures how quickly you fall asleep in a quiet environment during the day. The MSLT typically consists of five scheduled naps, each nap opportunity lasting 20 minutes, separated by two-hour breaks. During each of the nap opportunities, you lie in bed in a darkened quiet room and try to go to sleep. The time that it takes you to fall asleep is called the sleep latency. You will be allowed to sleep for a maximum of 15 minutes during each opportunity (You will be awakened if you don’t wake up on your own). If you do not fall asleep within 20 minutes, the nap trial will end.

References:

American Academy of Sleep Medicine. International classification of sleep disorders: diagnostic and coding manual. 3rd ed. Westchester, IL: American Academy of Sleep Medicine; 2014.)

  1. https://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0023519/

 

 

 

 

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