Healthier Sleep Magazine | Winter 2022 | Sleep-Related Movement Disorders

healthiersleepmag.com Winter 2022Restless Legs Syndrome Issue

Sleep-Related

Movement Disorders

Restless Legs Syndrome (RLS)

Pediatric

Sleep-Related Movement Disorders

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 Catherine Friederich Murray, MNLM Contributing Writers Cibele Dal Fabbro, DDS, PhD MaryAnn DePietro, CRT Karla Dzienkowski, RN, BSN Lindsay Jesteadt, PhD Melissa Krell, ARNP, DNP Gilles Lavigne, DMD, PhD, FRDC, hc Catherine Friederich Murray, MNLM Rosei Skipper, MD

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CONTENTS

Winter 2022 | Restless Legs Syndrome Issue

|4| Sleep Related Movement Disorders

| 10 | Restless Legs Syndrome (RLS)

| 20 | Pediatric Sleep-Related Movement Disorders

04

Sleep Related Movement Disorders

08

Bruxism

10

Restless Legs Syndrome (RLS)

14

Five Hallmarks of Restless Legs Syndrome

18

What Goes Kick in the Night?

23

World Sleep Society's Road to Better Sleep

24

Restless Sleep Disorder

26

Prevalence of Sleep-Related Movement Disorders

27

Should You Seek Treatment for RLS?

28

Patient Organization Highlight: Restless Legs Syndrome Foundation

IN EVERY ISSUE The BuZZZ about Sleep

Bedtime Reads

Ask the Sleep Doc

PAGE 16

PAGE 13

PAGE 30

Your latest buzzword is Augmentation

Your Sleep Story: A No-Hype Guide to Sleep Health

Your questions answered by sleep professionals

3 | healthiersleepmag.com

Sleep-Related Movement Disorders

By MaryAnn DePietro, CRT

M

ost people move a little when trying to fall asleep or change positions during the night.

But sleep-related movements disorders do not involve typical shifts like tossing and turning during sleep.

Instead, sleep-related movement disorders involve abnormal movements that interfere with sleep.

Sleep-related movement disorders can have a significant impact on a person’s sleep, health, and quality of life.

For example, some studies show an increased risk of having a stroke. A study published in QJM, the monthly journal of the Association of Physicians, indicated that people with a sleep-related movement disorder have an increased risk of all-cause stroke with a higher chance of a hemorrhagic stroke as opposed to an ischemic stroke.

There are different forms of sleep-related movement disorders. Although they are classified as movement disorders, each has its own symptoms and risk factors.

4 | Winter 2022 | Restless Legs Syndrome

Certain sleep-related movement disorders appear to occur more often in children, while others are seen more in adults. This article will take a look at the following six sleep movement disorders:

1. RESTLESS LEGS SYNDROME (RLS) 2. PERIODIC LIMB MOVEMENT

DISORDER (PLMD)

MOVEMENT DISORDER

3. SLEEP-RELATED BRUXISM 4. SLEEP-RELATED LEG CRAMPS 5. SLEEP-RELATED RHYTHMIC 6. HYPNIC JERKS

1.

2.

• Typically begin after an extended period of inactivity, such as when lying down

Symptoms of PLMD include:

RESTLESS LEG SYNDROME Restless legs syndrome (RLS) involves a strong urge to move the legs. It often occurs with an uncomfortable feeling in the legs that decreases with movement. The description of the uncomfortable sensation might include itching, throbbing, or electric shocks. These symptoms:

• Are usually worse at night • Are relieved with movement RLS is a fairly common sleep-related movement disorder. According to the National Institute of Neurological Disorders and Stroke, in the United States, up to 7-10% of people may have RLS. The cause of sleep-related movement disorders, such as RLS, is not entirely clear.

According to Dr. Raffaele Ferri, Scientific Director of the Oasi Research Institute IRCCS in Troina, Italy, in the case of RLS, data Dr. Raffaele Ferri suggests an imbalance in certain brain chemicals may contribute to the development of the disorder.

“In the pathophysiology of restless legs syndrome, a dopaminergic system dysfunction and/or a brain iron metabolism change have been indicated as a possible cause,” said Dr. Ferri.

Certain factors also appear to increase a person’s risk of developing RLS and include: Heredity: Having a family member, such as a parent or sibling, with RLS increases a person’s risk of developing the condition.

PERIODIC LIMB MOVEMENT DISORDER Periodic limb movement disorder (PLMD) involves repeated movement of the legs, arms, or truck during sleep. The movements may include upward flexion of the feet, twitching, or jerking movements. It can develop alone or in combination with other sleep disorders, such as narcolepsy or RLS. • Repeated limb movements during sleep (arms, legs, trunk, or head) • Sleep disturbances that may cause daytime sleepiness In order to diagnose PLMD, an adult must experience more than 15 episodes per hour as confirmed through polysomnography, whereas a child must experience more than five episodes. Additionally, other causes of limb movement, such as narcolepsy or RLS must be ruled out.

According to the Sleep Foundation, about 4-11% of people in the United States may have PLMD. Similar to RLS, the exact cause is not clear. But it appears a deficiency in dopamine may play a role.

PLMD may occur as a primary disorder or a secondary disorder, which means it likely occurs due to another medical condition. Some conditions associated with the development of PLMD include: • Spinal cord injury • Diabetes • Anemia • Medication side effects

• Another sleep disorder, such as RLS or narcolepsy

Iron deficiency: Having a deficiency in iron, even without anemia, appears to increase the risk.

Pregnancy: For some women, pregnancy triggers the development of RLS or worsens existing symptoms. Although it is not clear why, a change in hormone levels is likely the culprit.

Disorders continued on page 8 5 | healthiersleepmag.com

Disorders continued from 7

3.

4.

Sleep bruxism appears to occur more commonly in younger people. “Sleep bruxism affects more than 10% of young adults and decreases with age,” said Dr. Ferri.

Symptoms of sleep-related leg cramps include:

SLEEP-RELATED BRUXISM Sleep-related bruxism involves clenching or grinding the teeth during sleep. Individuals that have bruxism grind their teeth involuntary and do not realize they are doing it.

SLEEP-RELATED LEG CRAMPS Sleep-related leg cramps involve painful contractions of the leg muscles or foot, which develop during sleep or when trying to fall asleep. The pain may last several minutes. Some people develop leg cramps a few times a year, and for others, it can occur every night. The pain can interfere with proper sleep.

For some people, bruxism can also occur during waking hours. Although the physical action is the same, sleep-related bruxism and awake bruxism are classified as two distinct conditions.

• Painful spasms or contractions of the leg or foot

Possible symptoms of sleep-related bruxism include:

Sleep-related leg cramps are common. According to the American Academy of Sleep Medicine (AASM), about one-third of people over the age of 60 have sleeprelated leg cramps every few months. The cramps are also common in pregnant women. The condition is less common in children. But still, about 7% of children have occasional sleep-related leg cramps.

• Jaw muscle contractions in a repetitive pattern • Tooth grinding sounds • Jaw muscle pain • Temporal headaches • Wearing down of the teeth (in severe cases) • Tooth pain Risk factors for developing sleep-related bruxism include: • Neurological conditions, such as Parkinson’s disease • Medication side effects • Sleep apnea • Mental health issues Dr. Ferri explains, “The most common risk factors for developing sleep-related bruxism include smoking, anxiety, high levels of stress, alcohol abuse, and obstructive sleep apnea.”

6 | Winter 2022 | Restless Legs Syndrome

• Leg cramps that occur when an individual is falling asleep or during sleep where they wake a person up from sleep

Why some people develop sleep-related leg cramps is not definitively known. But certain things appear to increase a person’s risk.

Risk factors for developing sleep-related leg cramps include: • Nerve disease • Diabetes • Use of certain medications • Dehydration • Blood vessel disease

5.

SLEEP-RELATED RHYTHMIC MOVEMENT DISORDERS

Sleep-related rhythmic movement disorder involves repetitive body movements while asleep or drowsy. It mostly occurs in young children. Sleep-related rhythmic movements usually occur during sleep-onset. Typically, they are most common during non-REM sleep.

Symptoms include repeated body movements, such as: • Body rocking: This may include rocking the body while sitting up or rocking while on the hands and knees.

• Headbanging: This most commonly involves banging the head into the pillow while facedown.

• Head rolling: Most often, this involves moving the head back and forth while lying on the back.

6.

HYPNIC JERKS Hypnic jerks are typically a normal phenomenon that occurs when someone is falling asleep. It involves a sudden, involuntary muscle movement. Hypnic jerks occur most often when someone is moving from a wakeful state to sleep. The jerks or movements may be mild or intense and may cause a momentary awakening.

Hypnic jerks affect people of all ages and do not usually interfere with the quality of sleep. According to the Sleep Foundation, up to 70% of people have at least occasional hypnic jerks.

The cause of hypnic jerks is not known. One theory involves a misfire between the nerves in the part of the brain that controls the startle response. But certain factors may increase the chances of developing hypnic jerks, including:

• Rhythmic humming may also occur with body motions

• Poor sleep habits, such as irregular sleep

These episodes can last 15 minutes or longer and can disrupt sleep.

• High stress

Sleep-related rhythmic movement disorder is common in babies and toddlers, although the cause is not clear.

According to the AASM, body rocking is the most common movement and typically starts at about six months of age.

• Late-night exercise

By about nine months old, 59% of babies have one rhythmic movement. But that number decreases with age. By about 18 months old, the rate drops to 33%. By the time a child reaches five years old, only about 5% continue to have rhythmic movements related to sleep.

The disorder is less likely to occur in adults. When adult-onset sleep-related rhythmic movement disorder develops, it is associated with an injury to the central nervous system.

• Sleep deprivation • Caffeine • Stress Sleep-related movement disorders can interfere with getting the rest a person needs. Poor quality sleep can affect other areas of a person’s life and lead to additional health problems.

If you or a family member has symptoms of a sleeprelated movement disorder, it is best to see a sleep specialist. In some cases, polysomnography is needed to make a diagnosis. Getting a proper diagnosis is essential to developing an effective treatment plan to ease symptoms and improve sleep quality.

7 | healthiersleepmag.com

Bruxism

I grind my teeth during sleep. Why do I do this? How can I prevent it?

By Cibele Dal Fabbro, DDS, PhD and Gilles Lavigne, DMD, PhD, FRDC, hc

W

hat is Sleep Bruxism?

Many people grind their teeth during sleep—another term for which is sleep bruxism. For most people, it is not considered a disorder but, rather, a habit that results from having teeth that fit tightly together. It is simply an oral behavior that comes and goes throughout life.

Sleep bruxism is more common in children, which is often reported by parents who hear the unpleasant noise while their children sleep.

The frequency of sleep bruxism drops with increasing age, with about 12% of adults knowing that they have sleep bruxism. Most times, people become aware of this problem because their sleep partner tells them that they make a grinding noise, like rubbing rocks, during their sleep or because the person with bruxism is concerned about tooth wear or damage to dental restoration or has tired or sore jaw muscle in the morning.

Risk factors for sleep bruxism include life pressure, which may be felt as stress or anxiety. However, this is not always the case because individuals vary in the how they manifest stress. In the past, very small (micro) abnormal tooth contacts were described as the cause of bruxism; however, nowadays, scientific evidence does not support this finding.

8 | Winter 2022 | Restless Legs Syndrome

In otherwise healthy people, sleep bruxism is associated with brief and temporary vigorous reactivity of the heart and muscles during sleep. Indeed, during sleep, our nervous system revisits our external environment every 20-40 seconds.

This process is natural and is named cyclic alternating pattern.

Its role is to protect us from any event that can be a threat to our integrity and survival. You can think of this reactivity in terms of a cuckoo clock. At repeated regular intervals (in the case of the cuckoo clock, every 15 minutes), the bird pops out of the clock and scans its environment. If all is fine, the bird goes back in the clock.

Something similar happens within your body—every 20-40 seconds, your “bird” (that is your nervous

system) checks in with the rest of your body. If everything is OK, your nervous system shuts back down; however, if your sleeping brain perceives a threat, it will prepare your heart and muscles to react. This is a natural protective mechanism. Most sleep bruxism events occur in sync with such periodic arousals from sleep.

IS SLEEP BRUXISM ASSOCIATED WITH OTHER CONDITIONS? In some individuals, sleep bruxism can be associated with other conditions, what is termed comorbidities. The comorbidities include jaw pain and headache, difficulty with falling asleep or staying asleep (insomnia), snoring, or irregular breathing pauses

during sleep (obstructive sleep apnea). Such associations do not explain the causes of sleep bruxism; however, it is worth noting that such comorbidities are present in about one in every three people with sleep bruxism.

Gastroesophageal reflux, in which the stomach contents can back up into the esophagus, can also be present in people with sleep bruxism, and it is more likely associated with the aforementioned breathing disturbances or sleep apnea. In very rare cases, tooth grinding or tooth tapping during sleep can be associated with neurologic conditions, such as sleep epilepsy, or motor behavior related to vivid dreams (rapid eye movement [REM] sleep behavior disorder in which people act out their dreams during sleep). The presence of sleep bruxism with comorbidities requires more specific medical investigations, including sleep recording at home or in a laboratory.

HOW IS SLEEP BRUXISM TREATED? If you don’t have comorbidities, your sleep bruxism can be managed by a dentist using protective oral appliances (an occlusal splint) that reduce the grinding sounds and the risk of damaging your teeth.

You may not stop grinding, but the grinding will be less destructive and much less noisy. If your sleep bruxism is very intense or you feel a lot of jaw muscle tiredness or soreness, the occlusal splint

will reduce the jaw muscle and articulation overload. Your dentist or physician may prescribe a muscle relaxant to help in the short term; these medications should be taken before sleep, and you should be careful to avoid falls and not drive or use dangerous machinery.

under medical advice, by diet, correcting your sleep position (away from on your back), and using medication. Rare neurologic comorbidities related to sleep bruxism obviously need to be treated by a medical expert.

In some people who have intense sleep bruxism, botulinum toxin, which is injected every few months into the jaw muscles, can reduce the strength of the muscle contractions. In rare cases, some cardioactive medication can be used in the short term to calm the periodic arousals of sleep or overactive “cuckoo bird” system; this should only be started under medical supervision. A physical therapist or psychologist can teach you relaxation techniques. Much more research is needed to support such approaches.

Cibele Dal Fabbro (DDS, PhD) is a clinician scientist from Sao Paulo, Brazil, where she done her master and Dr. Cibele Dal Fabbro PhD and now she is an associate professor at Université de Montréal, and researcher at Center for Advanced Research in Sleep Medicine, CIUSSS Nord Ile de Montreal in Canada. She has been coordinating a dental medicine course over the last 12 years at Sleep Institute in Sao Paulo and running a clinic in the same domain.

If you have pain or headache, short term use of some painrelieving medication mixed with a muscle relaxant can help. Again, be aware of the risk of falls and accidents on the road or at work.

If you have both diagnosed sleep apnea and sleep bruxism, you could use a device that pushes air to open your airway (continuous positive airway pressure or CPAP) or a mandibular oral device that advances your lower jaw to keep your airway open. In children, a surgeon or orthodontist can correct large tonsils or a narrow palate with small lower jaw (retrognathia).

Gastric reflux can be managed,

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Gilles Lavigne, DMD, PhD, FRDC, hc is professor in dental medicine at the Universite de Montreal, Dr. Gilles Lavigne Canada and Center for Advanced Research in Sleep Medicine, CIUSSS Nord Ile de Montreal and CHUM. He conduct clinical research in orofacial pain and related sleep disorders including sleep bruxism and apnea.

9 | healthiersleepmag.com

Restless Legs Syndrome

One of the most common sleep movement disorders explained.

By Catherine Friederich Murray, MNLM

R

estless legs syndrome (RLS) is a sensorimotor neurologic disorder with a profound impact on sleep. The difficult-to-describe sensations (sensory) and urge to move (motor) occur most often during rest or inactivity, primarily in the evening and at night, and are relieved by movement. Once thought to be rare, RLS is now understood to be fairly common, affecting almost 3% of adults with moderate to severe symptoms at least 2 nights a week.

TERMS USED TO DESCRIBE THE SENSATIONS OF RLS ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○ ○

Aching Ants crawling under the skin Coca-Cola running through the veins Crazy legs Creepy-crawly Electric current Elvis legs Fidgets Grabbing Heebie-jeebies Itching Jittery Pain Pins and needles Pulling Shock-like Throbbing

10 | Winter 2022 | Restless Legs Syndrome

RLS can be primary, meaning that it has no known cause other than perhaps a genetic predisposition, or it can be secondary. Secondary RLS, sometimes called comorbid RLS, is associated with another condition, most commonly with iron deficiency, end-stage kidney disease, or pregnancy. Cardiovascular disease and Parkinson disease may also be comorbid conditions, but the science behind those is a little less clear.

AGE OF ONSET OF RLS RLS has a bimodal distribution of onset, meaning that there are two peak times when most people develop RLS—one peak is about age 20 and the other is in the mid-40s. In younger people, the likelihood is greater that they will have another family member with RLS, as compared with people older than 30. This has led researchers to speculate that heredity (genetics) might play a role in people with RLS who have a younger age at symptom onset.

DIAGNOSIS OF RLS There is no specific blood or imaging test to diagnose RLS. Instead, the gold standard is a clinical interview.

Without that interview to rule out RLS mimics, many other conditions fulfill the four original diagnostic criteria for RLS, which led to an overestimation in epidemiologic studies of the number of people who actually have RLS. However, when knowledgeable clinicians ask appropriate questions to tease out the presence of those RLS mimics, a more accurate diagnosis can be made; therefore, the fifth criterion was added to the diagnostic criteria in 2014. When the diagnosis is not clear through the interview, clinicians may order laboratory or imaging tests to rule out other conditions.

Once thought to be rare, RLS is now understood to be fairly common, affecting almost 3% of adults with moderate to severe symptoms at least 2 nights a week.

administered iron, as appropriate. People with RLS may find that not consuming caffeine or alcohol may help to reduce their symptoms, as may engaging in mentally alerting activities during periods of inactivity, such as while a passenger on an airplane, which often strikes dread in the hearts of people with RLS. In the case of flying, taking a flight earlier in the day rather than in the evening may also help with reducing symptoms.

TREATMENT OF RLS The Medical Advisory Board (MAB) of the RLS Foundation published an algorithm, or step-by-step guide, on treating RLS in 2004, and an update in 2013. Because new information has come to light, the Board updated the algorithm again in 2021, offering unique insights into a variety of RLS treatments.

John Winkelman, MD, PhD, Chief , Sleep Disorders Clinical Research Program at Massachusetts General Hospital; Professor of Psychiatry, Harvard Medical School; and a member of the Foundation’s MAB, has provided some key points from the new algorithm.

PHARMACOLOGIC THERAPY FOR RLS Starting treatment with medication first involves determining whether the symptoms are intermittent, chronic persistent, or refractory.

NONPHARMACOLOGIC THERAPY OF RLS Nonpharmacologic treatment may be helpful for mild symptoms or for reducing more severe symptoms. As has long been the case, the Board members recommend beginning with an assessment of each patient’s current medications, both over-the-counter and prescribed, and identifying any that may be exacerbating RLS symptoms. If possible, medications that worsen the RLS should be discontinued or changed to another drug that is less likely to affect RLS symptoms. In addition, every patient’s iron stores should be measured with a full serum iron panel. Inadequate stores should be replenished with either oral or intravenously

○ Are bothersome enough to require

RLS SEVERITY DEFINITIONS Intermittent

○ Bothersome enough to require treatment ○ Occur 2 or fewer times a week Chronic persistent

daily treatment ○ Occur 2 or more times a week ○ Cause moderate or severe distress

Refractory

○ Are unresponsive to treatment with

monotherapy (only 1 drug at a time) with tolerable doses of first-line agents due to limited efficacy, augmentation, or adverse effects RLS continued on page 12 11 | healthiersleepmag.com

RLS continued from 11 INTERMITTENT RLS THERAPY Because intermittent RLS affects people on 2 or fewer days per week, they don’t need pharmacologic treatment every night. In this case, people may take medications such as levodopa, a benzodiazepine (a sleeping pill), or a low-dose opioid (for example, tramadol or codeine) only as needed. Augmentation, as discussed in the following section, can occur with levodopa, so it is important to keep the dose as low as possible. Both the benzodiazepines and opioids should be used with caution, paying attention to potential side effects.

CHRONIC PERSISTENT RLS THERAPY A key point highlighted in the newest algorithm is a change in consensus on first-line treatment of moderate to severe (chronic persistent) RLS. The first medications approved by the US Food and Drug Administration (FDA) to treat RLS were the dopamine receptor agonists—pramipexole, ropinirole, and later, rotigotine. All of these drugs have been found to be beneficial in relieving the symptoms of RLS for most people; however, over time, their use often produces what medical professionals term augmentation (see page 16 for definition of augmentation). Because of this, the Board now recommends starting treatment of RLS with drugs called alpha-2-delta ligands. These include gabapentin, pregabalin, and gabapentin enacarbil, with gabapentin enacarbil having FDA approval for the treatment of RLS and the others used off-label. If a person cannot take an alpha-2-delta ligand or their symptoms are not responsive to this class of drugs, a dopamine receptor agonist can be used, but the dose should be kept as low as possible.

A recently published study that examined a prescriptions database in the United States found that 60% of the 670,000+ patients identified as having RLS are currently being Dr. John Winkelman treated with dopaminergic agents. Twenty percent of those, approximately 75,000 people, are being prescribed doses of dopaminergic agents above FDA- and guideline-recommended doses, with half of those prescribed doses at 150% or more of FDA- and guideline-recommended doses. According to Dr. Winkelman, “Dopaminergic agents have been 12 | Winter 2022 | Restless Legs Syndrome

used as first-line therapy for many years for RLS, but we now recognize that the high risk of augmentation outweighs their short-term clinical benefits. The large number of patients who are prescribed doses that are well above FDA-recommended doses is discouraging and an indication that alternative approaches need to be instituted that will allow patients to reduce or discontinue their dopaminergic medications. Using such high doses of dopaminergic agents is like throwing gasoline on the fire of RLS.” REFRACTORY RLS THERAPY For improving RLS symptoms and thus sleep and quality of life, the RLS Foundation algorithm recommends considering the use of opioids in people with refractory RLS. Because RLS symptoms are present for at least 12 hours per day in most people with refractory RLS, long-acting opioids (such as methadone, buprenorphine, and extended-release oxycodone) are the most commonly prescribed opioid medications for RLS. People with RLS who take opioids typically do not experience dose escalation, (that is, a need for higher and higher doses), and, in RLS patients who do not have a history of abuse, misuse (that is, taking the drug in a manner not prescribed) is uncommon. Clinicians should use caution but should not withhold this treatment from appropriate patients. The choice of which opioid to use depends on the patient’s symptoms, comorbid conditions, and other factors.

RLS DURING PREGNANCY AND WHILE BREASTFEEDING Pregnancy may be a particularly challenging time for women with RLS, and RLS may also appear for the first-time during pregnancy. RLS is fairly common during pregnancy: research that pooled the results of 27 different studies of RLS during pregnancy found that rates in the trimesters were 8%, 16%, and 22%, respectively. Women who develop RLS during pregnancy are at increased risk for having RLS symptoms later in life, but, for most women, RLS resolves with delivery.

As in other cases of RLS, maintaining adequate iron stores in pregnancy can help to relieve symptoms.

When nonpharmacologic therapy and iron replenishment do not control symptoms, the recently published algorithm from the RLS Foundation’s

MAB recommends using the lowest possible doses of medication, preferably on an as-needed basis, in only the second and third trimesters.

Clonazepam, levodopa, and lowdose oxycodone may be used with caution, but the patient and clinician should discuss the risk-benefit profile of each drug and should consult with the obstetrician.

In the previously mentioned study of RLS in pregnancy, 4% of women continued to have RLS in the postpartum period. For these women with RLS who choose to feed their babies with breastmilk (ie, lactate), any dopamine drugs (eg, levodopa and dopamine receptor agonists) should be avoided because they inhibit lactation. Treatment options during lactation include clonazepam, gabapentin, and tramadol. Again, caution should be exercised because of side effects of these medications, particularly sedating effects.

CONCLUSION As researchers have uncovered more clues to the cause of RLS and as current treatment options have been available for longer periods of time, our understanding of RLS and its treatment have changed. More effective treatments have become and will continue to become available. Clinical trials of newer agents and studies of currently available drugs in adolescents are ongoing.

Patient participation in these trials and clinicians conducting other research are necessary to continue to discover the answers to the mystery of RLS. *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.

Bedtime Reads Looking to learn even more?

Each issue, we highlight a book about sleep.

Available on Amazon and from other book retailers

Your Sleep Story: A No-Hype Guide to Sleep Health

by Matt Bianchi, MD, PhD In every aspect of health, making good decisions means placing information into context. Nowhere is this more important than in sleep health. Your story is your context. This book is your guide to sifting through the mountains of information and advice about sleep for what matters most to you.

Whether you’re just getting started making sleep a priority, or you’re already working through health concerns like insomnia or sleep apnea, you need practical information that fits into your story. Are you ready to make your own decisions about your sleep using information that is important to you?

Then don’t allow headlines and hype to distract you. Just start. Right here.

13 | healthiersleepmag.com

Five Hallmarks of Restless Legs Syndrome

R

estless legs syndrome (RLS) is a sleep disorder that usually presents with symptoms prior to sleep onset. Difficulty falling asleep, due to leg discomfort, is therefore a common presentation.

There are five distinct criteria for the diagnosis of RLS; however, it is important to consider that some patients, such as young children, may not be able to identify and express these symptoms clearly.

14 | Winter 2022 | Restless Legs Syndrome

Urge to move legs.

An urge to move the legs usually but not always accompanied by, or felt to be caused by, uncomfortable and unpleasant sensations in the legs. Sometimes the urge to move is present without the uncomfortable sensations and sometimes the arms or other body parts are involved in addition to the legs.

Symptoms are worse in the evening.

The urge to move and any accompanying unpleasant sensations are worse in the evening or night than during the day or only occur in the evening or night.

Symptoms are worse at rest.

The urge to move the legs and any accompanying unpleasant sensations begin or worsen during periods of rest or inactivity such as lying down or sitting.

Symptoms feel better with movement.

The urge to move and any accompanying unpleasant sensations are partially or totally relieved by movement, such as walking or stretching, at least as long as the activity continues.

Symptoms are not due to another medical condition or medication side effect.

The occurrence of the above features is not solely accounted for as symptoms primary to another medical or a behavioral condition.

15 | healthiersleepmag.com

The BuZZZ about Sleep Your Latest Buzzword is Augmentation.

Augmentation is the phenomenon in which patients who have been taking a dopaminergic medication for the treatment of restless legs syndrome (RLS) and were doing well on the medication, suddenly start experiencing a worsening of the symptoms of RLS or begin experiencing symptoms of RLS in other body parts, such as their arms, face or trunk. There are guidelines published by international organizations that recommend treatment or intervention options, specifically for physicians, on how to respond when patients present with these symptoms. In general, it is not recommended to increase the medication dose, but to speak with your physician regarding the next steps in care.

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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 17 | healthiersleepmag.com

What Goes Kick in the Night?

By Rosei Skipper, MD

Has your bed partner ever told you that you move suddenly or kick during sleep? Or have you woken up during sleep unsure of what roused you? You may be experiencing periodic limb movement disorder (PLMD).

18 | Winter 2022 | Restless Legs Syndrome

A

How is PLMD diagnosed?

So, what is a “Periodic Limb Movement” during sleep?

Your doctor may also order tests to check the functioning of your kidneys and blood levels of nutrients such as iron, folic acid, vitamin B12, and magnesium. They may also check to see if your thyroid is working correctly.

ccording to the Cleveland Clinic, PLMD is quite common. Although most patients have a co-occurring sleep disorder, every so often these movements are the only symptom a person may experience. The disorder may not even be bothersome to the patient themselves, as periodic limb movements may occur during sleep and be completely asymptomatic and noticed only by a bed partner.

In other cases, PLMD is disruptive and needs to be investigated and treated.

You may be surprised to learn that we move a great deal during the nighttime hours, and some amount of movement is completely normal. PLMD is different because it happens repeatedly and disrupts sleep.

According to the Cleveland Clinic, these movements usually involve the lower extremities, though in some people the upper limbs can also be involved.

These movements happen most frequently in light, non-rapid eye movement sleep and on regular intervals of 5 to 90 seconds. A person may have many movements during one night and none the next, so keeping a detailed sleep diary is important for diagnosis.

Who gets PLMD?

Most people who suffer from PLMD also have one or more related sleep disorders. According to the Cleveland Clinic, about 80% of patients with restless legs syndrome (RLS) have these movements. PLMD is common in patients with narcolepsy and REM behavior disorder and can occur in patients with obstructive sleep apnea even after treatment with positive airway pressure PAP. About one-third of adults over 65 experience these movements, though many won’t be symptomatic or need any sort of treatment.

What Causes PLMD?

In addition to other sleep disorders and older age, some medical conditions are associated with PLMD, including diabetes, iron deficiency, spinal cord injuries and a condition called uremia when the kidneys are not functioning correctly. Thus, your sleep doctor will want to take a careful history and conduct a thorough medical investigation when diagnosing you.

The diagnosis of PLMD is based on both history and an overnight polysomnogram (PSG). During the test the technicians will measure the bioelectrical signals moving through the body and note any movements or interruptions in sleep. A PSG can also help detect other disorders you may be experiencing, such as REM sleep disorder or sleep apnea.

How is PLMD treated?

There is no cure for PLMD, but treatment can improve your symptoms and help you get better rest. According to the Cleveland Clinic, there are both behavioral and medical treatments for PLMD. You may need to cut back or eliminate caffeine in your diet, as it can make the symptoms quite a bit worse. Some antidepressants make symptoms worse, so your doctor will want to discuss your medication history carefully and help you make decisions about adjusting a prescription, if needed.

Drugs can also be used to treat PLMD, “including dopamine agonists, alpha-2-delta ligands, benzodiazepines, and narcotics. Current treatment recommendations consider the dopamine agonist as a first line of defense.”

While treatment may not cure your disorder, together you and your doctor can work to reduce or even eliminate your symptoms. Your bed partner may also appreciate the reduction in sudden kicks coming their way! *Citations available on healthiersleepmag.com

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

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.

19 | healthiersleepmag.com

Pediatric Sleep-Related Movement Disorders

By MaryAnn DePietro, CRT

P

ediatric sleep issues affect millions of children to varying degrees. According to the American Academy of Pediatrics, between 25% to 50% of preschool-age children have sleeprelated problems. It is also estimated that 40% of adolescents also have sleep problems. Some of those children have a pediatric sleep disorder referred to as a sleep-related movement disorder (SRMD).

20 | Winter 2022 | Restless Legs Syndrome

SRMDs involve repeated body movements that occur during sleep or when a person is falling asleep. There are a few different SRMDs, including restless legs syndrome (RLS) and periodic limb movement disorder (PLMD). Learning more about both conditions can help parents get the right treatment for their children.

Anywhere from 7 to 35% of children with ADHD also meet the criteria for a diagnosis of RLS. WHAT IS PEDIATRIC RESTLESS LEGS SYNDROME? RLS is classified as a neurological condition that tends to run in families. It involves a strong urge to move the legs along with an unpleasant sensation in the legs.

Typically, RLS is worse during times when someone is inactive, such as when they are resting or relaxing.

Symptoms usually occur mainly at night.

Although RLS occurs in adults, it often starts before age 20. According to the Restless Legs Syndrome Foundation, about 35% of people with the condition developed symptoms before the age of 20. It is estimated that in the United States, about 1.5 million children and teens have RLS. PEDIATRIC RLS SYMPTOMS For a diagnosis of restless legs syndrome, five features must be present, which include the following: • A strong urge to move the legs, which is accompanied by an unpleasant sensation in the legs • Symptoms worsen during inactivity, such as lying down • Symptoms improve with activity, such as walking • Symptoms are worse in the nighttime hours • Symptoms are not due to another condition, such as arthritis or leg cramps WHAT IS PEDIATRIC PERIODIC LIMB MOVEMENT DISORDER? PLMD is another form of movement disorder that may affect children. Periodic limb movement disorder involves repetitive limb movements during sleep. PLMD may involve movement of the legs, arms, trunk, or head. It causes sleep disturbances and impaired daytime functioning, which are not due to another sleep disorder. Diagnosis is made through a sleep study (polysomnography).

PEDIATRIC PLMD SYMPTOMS RLS and PLMD are similar in some ways, but they are two distinct disorders. The biggest difference is restless legs syndrome causes uncomfortable sensations in the legs, whereas PLMD does not. Individuals with RLS may or may not have limb jerking during sleep.

Symptoms of PLMD include the following: • Repetitive limb movements during sleep • Sleep disturbances affecting daytime functioning (such as daytime fatigue) • Five episodes or more per hour as confirmed through polysomnography • Exclusion of other causes of limb movement, such as RLS or narcolepsy CAUSES The cause of SRMD is not entirely known. But RLS appears to be associated with certain conditions, such as attention-deficit/hyperactivity disorder (ADHD).

According to Daniel L Picchietti, MD, a pediatric neurologist, parents often seek a diagnosis for their child not solely based on sleep issues. “Parents tend to be more aware of the behavioral impact of sleep issues and less concerned with the specific Dr. Daniel Picchietti limb or leg symptoms,” said Picchietti. Anywhere from 7 to 35% of children with ADHD also meet the criteria for a diagnosis of RLS. Certain factors also may play a role in developing either RLS or PLMD. For instance, it appears that iron deficiency, dopamine levels, and genetics may affect the likelihood of developing both movement disorders.

Children with a family history of RLS and PLMD have an increased risk of developing the disorder.

Pediatric continued on page 22 21 | healthiersleepmag.com

Pediatric continued from 21 TREATMENT Treatment for both RLS and PLMD may involve a combination of lifestyle changes and medication. “The focus of treatment in children is usually to improve sleep rather than leg symptoms,” said Dr. Picchietti.

LIFESTYLES CHANGES Lifestyle modifications may be enough to treat the condition when symptoms and impact on quality of life are mild. Helpful lifestyle modifications may include: Healthy sleep habits: Improving sleep habits to include developing a regular wake/sleep cycle and preventing insufficient sleep may help.

Limiting caffeine: Limiting caffeinated drinks, such as cola and hot chocolate can make it easier for children to fall asleep and may improve sleep quality.

Exercise: Exercise may promote deep sleep and can improve RLS in children. Encourage daily exercise for children, which may also benefit mental health issues.

Additional exacerbating issues that should get addressed include underlying sleep disorders, such as sleep apnea.

Taking medications, such as sedating antihistamines for allergies, may also interfere with getting good sleep and worsen symptoms of RLS or PLMD. Be sure to talk with your child’s doctor about medication he/she takes to determine if it interferes with sleep.

IRON SUPPLEMENTS The first line treatment of RLS and PLMD is iron supplementation, if the child’s iron status (as measured by a test called ferritin) is low or low normal. However, it is important to discuss supplements first with your child’s healthcare provider. This should include a review of the need for iron, discussion of types of iron supplementation, and a plan to monitor for effectiveness and side effects. Oral iron is typically the next step, with intravenously administered iron reserved for complicated cases or instances where oral iron fails.

22 | Winter 2022 | Restless Legs Syndrome

MEDICATION In children that have significant symptoms that lifestyle modifications do not help, medication may be an option. It is important to understand that the U.S. Food and Drug Administration has not approved any medication to treat either RLS or PLMD in children.

But certain drugs have been used off-label and may help reduce symptoms. Most of the medications used off-label are used in children aged 6 through 18.

Examples of medications include: Gabapentin: This drug is considered a first-line medication for children over age six with RLS. It appears to reduce symptoms of RLS and improve sleep quality.

Clonidine: This medication is used to treat high blood pressure, but was also found to help treat ADHD and sleep onset problems in children. It can have side effects, such as nightmares, and may not be appropriate for sleep maintenance.

Dopamine agonists: Dopamine agonists have US Food and Drug Administraion (FDA) approved for use in adults with RLS; however, due to adverse effects these drugs are used less than in the past due to adverse effects. Dopaminergic agents may also work for children but should be reserved for only the most unmanageable cases.

It is important to understand that not every treatment will work effectively for every child. Special considerations may also be needed for children with additional issues, such as anxiety. Also, off-label medication is not generally used in children under age six. Typically, younger children are treated with lifestyle modifications and possibly iron supplements if indicated. *Citations available on healthiersleepmag.com

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

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.

WORLD SLEEP SOCIETY’S ROAD TO BETTER SLEEP 10. Avoid hanging out in your bed.

It should be reserved for sleep and sex.

9. Block out all distracting noise and eliminate as much light as possible.

8. Find a comfortable sleep temperature and keep the room well ventilated.

7. Use comfortable, inviting bedding.

1. Establish a regular bedtime and waking time.

10 TIPS FOR BETTER SLEEP

6. Exercise regularly, but not right before bed.

5. Choose a bedtime snack that won’t disrupt your sleep.

2. Allow yourself to take a nap if tired, but do not exceed 45 minutes of daytime sleep.

3. Avoid excessive alcohol ingestion 4 hours before bedtime and do not smoke.

4. Avoid caffeine 6 hours before bedtime.

Created by World Sleep Society’s committee of internationally-renowned experts in the field of Sleep Medicine and Research.

3 ELEMENTS OF QUALITY SLEEP

DEPTH

DURATION

CONTINUITY

DURATION

The length of sleep should be sufficient for the sleeper to be rested and alert the following day.

CONTINUITY

Sleep periods should be seamless without fragmentation.

DEPTH

Sleep should be deep enough to be restorative.

Created by World Sleep Society’s committee of internationallyrenowned experts in the field of sleep medicine and research.

For more information visit worldsleepsociety.org

Restless Sleep Disorder

By Melissa Krell, ARNP, DNP

M

any parents describe their child’s sleep as restless.

Their child might toss and turn throughout the night, end up facing a different direction by morning, or even fall out of the bed. Some parents describe their child as a “windmill” or may hear them moving during the night, all the way from another room.

Many different underlying sleep and medical problems can cause restless sleep including asthma, anxiety and depression, chronic pain, or obstructive sleep apnea.

When there seems to be no obvious underlying cause of restlessness during sleep, children may be diagnosed with restless sleep disorder (RSD).

WHAT IS RESTLESS SLEEP DISORDER? RSD is a recently defined sleep movement disorder that can affect children 6-18 years old. It consists of large body movements that are disruptive to sleep, impact daytime functioning, and can’t be explained by another sleep or medical disorder.

24 | Winter 2022 | Restless Legs Syndrome

HOW IS RSD DIAGNOSED? RSD is diagnosed after your child’s sleep provider does a thorough history and examination. To be diagnosed with RSD the following symptoms need to be present: ● Child or parent describes sleep as restless ●

Large body movements during sleep occur at least 3 times a week for greater than 3 months

●

Restless sleep causes daytime impairment such as excessive sleepiness, difficulty concentrating, or irritability.

Your child’s sleep provider will also order an overnight sleep study to rule out any other sleep disorders, such as obstructive sleep apnea or periodic limb movement disorder, that can also cause restless sleep. Large body movements are counted during the sleep study and more than 5 of these per hour are required for a diagnosis of RSD. WHAT TREATMENTS ARE AVAILABLE FOR RSD? Although the specific cause of RSD is not yet identified, early evidence points to an iron deficiency as a possible contributor. The brain needs to have access to sufficient iron stores to make dopamine, a neurotransmitter that can affect movements. If your child is diagnosed with RSD, their sleep medicine provider will check his/her ferritin level to see if your child has low iron stores. If the ferritin level is less than 50mcg/L, oral iron supplementation is recommended as first line treatment to help

improve RSD. Iron is given once or twice a day and comes in liquid, chewable, and tablet form.

It is generally well tolerated but common side effects can include upset stomach and constipation.

Ferritin levels are typically monitored every 3 months. If ferritin levels don’t increase with oral supplementation or a child is unable to tolerate the taste or side effects, an intravenous (IV) iron infusion may be recommended.

IV iron is typically a one-time infusion that takes about 15-20 minutes. Children must be able to tolerate IV insertion and sit relatively still for the duration of the infusion. Side effects from an IV iron infusion are typically mild and include flushing, dizziness, or discoloration of the injection site.

More serious side effects, such as allergic reaction or low phosphorus levels, are rare. Studies show that most patients with RSD who receive either oral or IV iron see an improvement in their RSD symptoms.

WHAT SHOULD I DO IF I THINK MY CHILD’S SLEEP IS RESTLESS? While restless sleep can be very subjective, it is important to investigate possible causes. This is especially true when a child’s poor sleep is leading to problems in school or at home during the day. If you’re concerned that your child has increased restlessness at night that is impacting the quality of his/her sleep, you should talk to your healthcare provider or sleep medicine provider to see if your child may benefit from an evaluation with an overnight sleep study or ferritin testing. .......................................................

Melissa Krell is a Pediatric Nurse Practitioner who specializes in Sleep Medicine at Seattle Children’s Hospital.

Melissa Krell

25 | healthiersleepmag.com

Prevalence of SRMD Across the Lifespan Sleep-Related Movement Disorders (SRMD) can occur across the lifespan. However, the prevalence of some sleep-related movement disorders is greater during childhood and then decreases as an individual ages, whereas the prevalence of other sleep-related movement disorders increases with age. The graphic below illustrates some of the common sleep-related movement disorders and their prevalence throughout an individual’s lifespan.

SleepRelated Bruxism Rhythmic Movement Disorder

• Children = 14-17% and decreases over the lifespan • Teenagers to young adults = 12% • Young to middle-aged adults = 8% • Older adults = 3% • 9 months of age = 59% • 18 months = 33% • 5 years old = only 5%

Restless Legs Syndrome

26 | Winter 2022 | Restless Legs Syndrome

• Older adults are more likely to be affected than are children and younger adults- the prevalence increases up to 60-70 years of age.

• Prevalence is estimated to be around 2% in the pediatric population.

• RLS symptom onset usually occurs before the patient is 30 years

old when a genetic component is present, but in cases without a genetic component, onset occurs later.

Should You Seek Treatment for RLS? The self-completed International Restless Legs Syndrome Study Group Rating Scale (IRLS) identifies the severity of RLS from mild to very severe. This scale is also used to assess treatment outcomes and to determine if RLS gets worse over time. The following ten questions allow the patient to rate their symptoms.

In the past week…

1. Overall, how would you rate the RLS discomfort in your legs or arms? 4 | 3 | 2 | 1 | 0

4 = Very Severe | 3 = Severe | 2 = Moderate | 1 = Mild | 0 = None .................................................................................................................................................................................................

2. Overall, how would you rate the need to move around because of

your RLS symptoms? 4 | 3 | 2 | 1 | 0

4 = Very Severe | 3 = Severe | 2 = Moderate | 1 = Mild | 0 = None

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

3. Overall, how much relief of your RLS arm or leg discomfort did you get

from moving around? 4 | 3 | 2 | 1 | 0

4 = No relief | 3 = Mild relief | 2 = Moderate relief | 1 = Almost complete relief | 0 = No symptoms .................................................................................................................................................................................................

4. How severe was your sleep disturbance due to your RLS symptoms? 4 | 3 | 2 | 1 | 0 4 = Very Severe | 3 = Severe | 2 = Moderate | 1 = Mild | 0 = None

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

5. How severe was your tiredness or sleepiness during the day due to

your RLS symptoms? 4 | 3 | 2 | 1 | 0

4 = Very Severe | 3 = Severe | 2 = Moderate | 1 = Mild | 0 = None .................................................................................................................................................................................................

6. How severe was your RLS as a whole? 4 | 3 | 2 | 1 | 0

4 = Very Severe | 3 = Severe | 2 = Moderate | 1 = Mild | 0 = None .................................................................................................................................................................................................

7. How many days a week did you get RLS symptoms?

4 | 3 | 2 | 1 | 0

4 = 6 to 7 days | 3 = 4 to 5 days | 2 = 2 to 3 days | 1 = 2 to 3 days | 0 = None .................................................................................................................................................................................................

8. When you had RLS symptoms, how severe were they on average

in a 24-hour day?

4 | 3 | 2 | 1 | 0

4 = 8 hours or more | 3 = 3 to 8 hours | 2 = 1 to 3 hours | 1 = less than 1 hour | 0 = None .................................................................................................................................................................................................

9. Overall, how severe was the impact of your RLS symptoms on your ability

to carry out your daily affairs, for example carrying out a satisfactory

family, home, social, school or work life? 4 | 3 | 2 | 1 | 0

4 = Very Severe | 3 = Severe | 2 = Moderate | 1 = Mild | 0 = None .................................................................................................................................................................................................

10. How severe was your mood disturbance due to your RLS symptoms for example angry, depressed, sad, anxious or irritable? 4 | 3 | 2 | 1 | 0 4 = Very Severe | 3 = Severe | 2 = Moderate | 1 = Mild | 0 = None

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

Total:

Each question is scored using a Likert scale from 0-4. The scores are added up to a maximum score of 40. Scores can be interpreted as follows: 1-10: Mild | 11-20: Moderate | 21-30: Severe | 31-40: Very Severe If these scores concern you, contact your healthcare provider, but please remember that RLS is treatable.

IRLS © IRLS Study Group 2001 – All Rights Reserved

27 | healthiersleepmag.com

PATIENT ORGANIZATION HIGHLIGHT

Restless Legs Syndrome Foundation

By Karla Dzienkowski, RN, BSN

T

symptoms. In July 2021, Mayo Clinic Proceedings he Restless Legs Syndrome Foundation is a published new consensus treatment guidelines to nonprofit 501(c)(3) organization dedicated to inform healthcare providers about best practices in improving the lives of men, women, and children treating RLS. The Foundation has certified eleven who live with this often-devastating disease. The RLS Quality Care Centers to provide individuals with organization’s goals are to increase awareness, improve access to knowledgeable healthcare providers who have treatments, and through research, find a cure. The experience treating mild to severe forms of the disease, Restless Legs Syndrome Foundation is the leading including augmentation. organization for science-based education and patient services for people suffering from restless legs The Foundation’s Public Policy Initiative syndrome. It is also the only organization allows members of the RLS community with a dedicated research grant program to share their own RLS story with to advance promising research their legislators in an effort to leading to new treatments and a increase RLS research funding, cure for RLS. I have high hopes for increased support healthcare provider awareness of RLS, improved and education at the CDC, and Founded in 1992, the Foundation durable treatments, and ultimately, improve access to treatment. has provided over $2 million research leading to the discovery of in support of RLS research. It The RLS Foundation celebrates a cure so that future generations has grown from a small group its 30th Anniversary on June are no longer affected by RLS. of volunteers meeting around a 17, 2022. Looking back to 2002 kitchen table in Raleigh, North when her eleven-year-old daughter Carolina, into a growing organization was newly diagnosed with RLS, RLS with nearly 6,000 members, over 70 Foundation Executive Director Karla volunteers, and a small full-time staff in an Dzienkowski says, “I look forward to the next office located in Austin, Texas. decade in the history of the RLS Foundation. I have RLS was regarded as a “rare” condition when we began, high hopes for increased awareness of RLS, improved and durable treatments, and ultimately, research leading but our understanding of the disease has changed to the discovery of a cure so that future generations are drastically. We now know that the condition is not rare no longer affected by RLS.” at all. RLS affects about 5-10% of adults in Europe and North America; 2-3% with moderate to severe To learn more visit rls.org forms of the condition. .....................................................................................

Karla Dzienkowski, RN, BSN is the LIVING WITH RLS executive director of the Restless Nearly 12 million Americans live with RLS. There Legs Syndrome (RLS) Foundation, a are four FDA-approved treatments for RLS—none patient organization based in Austin, are lifelong therapies. About 1 in 33 Americans – 3 Texas. She became involved with the percent of the US population – has RLS that is severe organization when her young daughter was diagnosed with RLS and has been enough to need daily medical treatment. When all a tireless advocate for RLS research, other treatments have failed, opioids in low total education, and treatment. daily doses are highly effective at alleviating RLS

28 | Winter 2022 | Restless Legs Syndrome

Karla Dzienkowski

ADVANCING SLEEP HEALTH WORLDWIDE MISSION

The mission of World Sleep Society is to advance sleep health worldwide. World Sleep Society fulfills 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

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

• American Academy of Sleep Medicine (AASM)

• Hong Kong Society of Sleep Medicine

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• Indian Association of Surgeons for Sleep Apnoea

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

WSS

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rld Sleep Day Hosted by World Sleep Society

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• International RLS Study Group • Israel Sleep Research Society • Italian Association of Sleep Medicine • Japanese Society of Sleep Research

• CMDASM -Chinese Medical Doctor Association Sleep Medicine Specialized Committee

• Peruvian Association of Sleep Medicine (APEMES) • Portuguese Sleep Association

• Czech Sleep Research and Sleep Medicine Society

• Romanian Association for Pediatric Sleep Disorders

• EURLSSG

• Russian Society of Somnologists

• European Academy of Dental Sleep Medicine (EADSM)

• Serbian Sleep Society

• Finnish Sleep Research Society

ACCESSIBLE SLEEP TRAINING AROUND THE WORLD

• International Pediatric Sleep Association (IPSA)

• Minnesota Sleep Society

• Federation of Latin American Sleep Societies

GUIDELINES

• Integrated Sleep Medicine Society Japan (ISMSJ)

• Chinese Sleep Research Society

• European Sleep Research Society

INTERNATIONAL SLEEP

• Indian Sleep Disorders Association • Indian Society for Sleep Research

• Sleep and Wakefulness Medicine Moroccan Federation • Sleep Research Society • South East Asian Academy of Sleep Medicine

• French Society for Sleep Research and Sleep Medicine

• Taiwan Society of Sleep Medicine

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29 | 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

30 | Winter 2022 | Restless Legs Syndrome

Question: Can taking iron cure my Restless Legs Syndrome (RLS)?

Dr. Zak: Before answering this question, I want to address the terms. You have asked about "curing" RLS. RLS is not like an infection where there is a medication (an antibiotic, for example) and once taken, the infection is "cured". Consider it more like hypertension, a clinical disorder that needs to be managed.

That being said, RLS tends to occur in individuals with a genetic predisposition in the setting of low brain iron such that restoring that state can eliminate the symptoms.

Therefore, the answer to your question is actually "yes" and "no".

It is "yes", if the low brain iron is occurring for a specific and limited reason, such as insufficient iron in the diet or an episode of acute loss of blood, such as blood loss from surgery or frequent blood donations.

In these cases, once the iron loss is corrected, you can return to an RLS-free state. However, many people we see require higher levels of blood iron than they have at baseline to overcome the symptoms.

These individuals need to have iron therapy long-term, which to me would say that it is not so much a cure as a treatment. Still others get no relief or only partial relief of RLS symptoms with iron alone and require another medication, such as pregabalin, or behavioral treatment, such as warm soaks before bedtime.

Dr. DelRosso: Iron supplementation improves symptoms of RLS but it’s not curative. The symptoms of RLS can be exacerbated by many other factors (use of caffeine, medication effect, lack of exercise, presence of another disorder or condition, among others) so treatment and evaluation of RLS should be comprehensive and done by a sleep professional.

Dr. Lipford: If you are iron deficient, a course of iron supplementation can help reduce (and in some cases resolve) RLS symptoms. In general, oral iron supplementation is used. However, in some cases (such as severe iron deficiency or intolerance/difficulties absorbing oral supplements) IV iron treatments may be recommended.

Combining an iron supplement with vitamin C can increase absorption, and iron supplements should ideally be taken on an empty stomach. It can take a few months after starting an iron supplement to see improvements in RLS symptoms.

It is also important to know that too much iron can be bad for our health, so you should not start taking an iron supplement without talking to your doctor. If you are iron deficient, your doctor may want to do additional tests to figure out why and your doctor will guide you on the best way to take iron supplements.

Dr. Thomas: In most instances, RLS occurs in individuals with a deficiency in brain iron, specifically, in the part of the brain that is involved in rhythmic activity. It is unclear why there is reduced brain iron, but it may involve abnormal transport of iron into this area, or abnormal storage/binding. There are animal models of iron deficiency and RLS, making it more certain that iron is critical. There is also a delicate balance of three neurotransmitters (brain chemical information messengers) involved in RLS - adenosine, dopamine, and glutamate. A normal balance

requires iron. If iron deficiency in the body caused RLS, such as severe blood loss, then iron replacement could potentially cure RLS. In most instances, there is normal blood/ liver/gut/bone marrow iron but reduced brain iron.

Iron replacement (oral) helps if there are low ferritin (a measure of iron stores) levels, but otherwise intravenous (IV) iron is needed, which bypasses the block of iron absorption when the non-brain iron is normal. IV iron raises levels for several weeks to months and allows the brain to slowly take up what is needed. There is probably no real cure, and sometimes there is a need for repeat IV iron. Not all IV iron preparations are equal for the brain.

Question: What other options, besides medication, are there for treating RLS? Dr. Lipford: There are lots of ways to reduce RLS symptoms which don’t involve medications. A very effective technique is to incorporate moderate exercise into your daily regimen. This could be as simple as taking an evening stroll.

Experiment with the type and timing of exercise to see what works best to alleviate your RLS symptoms. Warm soaks or using a hot tub in the evening can be helpful. Additionally, many people with RLS find massaging the legs and stretching every night before bed to be useful. Avoiding caffeine and alcohol in the evenings can also help.

Dr. Zak: Wonderful question! As above, we generally begin with assessing iron levels and ensuring not just "normal" iron storage but more mid-normal to high-normal iron storage (we often follow ferritin levels, a measure of iron storage rather than just iron levels since iron levels are dependent on time of day and immediate ingestion).

In addition to iron, one can try "counter stimulation methods", which often consist of warm soaks before bedtime, stretching or rubbing the legs--anything that applies pressure to the legs. There are devices one can try that provide stimulation to the legs as well, which work for some people and not for others. We also recommend avoiding aggravating factors such as caffeine and alcohol and watching the effect of timing, amount, and type of exercise on the RLS symptoms.

Dr. Thomas: Temperature (whatever helps, warmer or colder), vibration devices (one was pulled from the market due to lack of medical (vs. "cosmetic") approval, transcutaneous electrical nerve stimulation - such approaches should have a medical doctor guiding you.

Dr. DelRosso: Exercise seems to improve symptoms. Also, avoidance of substances known to make the symptoms of RLS worse. Some people recommend massage or stretching before bedtime.

Ask the Doc continued on page 34 31 | healthiersleepmag.com

Ask the Doc continued from 33

Question: When I sleep, I am often awakened with severe leg cramps. What can I do through the day to ensure this does not occur at night?

Dr. DelRosso: Drink plenty of fluids to avoid dehydration. Massage and stretch your legs before bedtime. Avoid tight fitting socks or clothing, including tightly tucked-in bedsheets.

Dr. Zak: Leg cramps are such a painful and frustrating problem. They can be caused by being dehydrated so ensuring adequate hydration is important. For some patients, the leg cramps can come in the setting of abnormal calcium and magnesium levels so ensuring that these are normal is sometimes helpful. Try stretching the legs before bedtime (since cramps are often in the calves, stretching the calves is generally recommended and there are a variety of standing exercises that are suggested). Some people find vitamin B complex and vitamin E helpful. If these measures do not work, there are prescription medications that can be helpful and best discussed with your primary care provider.

Dr. Thomas: Hydration and "ionic balance" (potassium, sodium, and especially magnesium) can help prevent leg cramping at night. It is also important to avoid intermittent random over-exertion. Overthe-counter magnesium oxide at bedtime could help. Tonic Water (used for example, to make "Gin and Tonic") has quinine which reduces cramps, but if used should be under medical supervision.

There are some muscle disorders where cramping is a key symptom and may require medications to "calm" the nerves supplying the muscle.

Dr. Lipford: Nighttime leg cramps can be a frustrating problem. Staying wellhydrated throughout the day can help to reduce the frequency of cramps. Additionally, stretching the legs before bed can be beneficial. You might also want to try a warm soak prior to bed. If the cramps persist, check in with your doctor to see if there are any electrolyte deficiencies that could be contributing, or if the cramps could be related to any of the medications you are on.

Question: My child grinds his teeth all night long. How do I know if it is more than typical childhood teeth grinding?

Dr. DelRosso: In many cases, treatment of bruxism is unnecessary, and children outgrow bruxism.

However, I usually recommend an evaluation by a dentist to assess if any dental issues could be contributing to bruxism. Also, if symptoms of another sleep disorder are present, such as snoring, an evaluation by a sleep physician may be necessary. Keep an eye on activities during the day that have been associated with bruxism, such as nail biting or pen biting, and discuss with your pediatrician options to stop these activities.

HAVE A QUESTION FOR THE SLEEP DOCS? Submit your questions by email to healthiersleep@worldsleepsociety.org.

Questions are selected based on space & applicability.

32 | Winter 2022 | Restless Legs Syndrome

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ISSUE TOPICS • SLEEP APNEA • HEALTHY SLEEP • SLEEP DISORDERS

• INSOMNIA • DAYTIME SLEEPINESS • RESTLESS LEGS SYNDROME (RLS)

Healthier Sleep is published quarterly 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.

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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.

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INDIA

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”.

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CHINA

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.

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Mission The mission of the World Sleep Society is to ADVANCE SLEEP HEALTH WORLDWIDE. World Sleep Society fulfills 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.

World Sleep Society serves as a bridge between different sleep societies and cultures, supporting and encouraging worldwide exchange of clinical information and scientific studies related to sleep medicine. World Sleep Society seeks to encourage development and exchange of information for worldwide and regional standards of practice for sleep medicine.