Restless Legs Syndrome Foundation Blog

May 8, 2017

Causes and Consequences of Sleep Deprivation in American Teenagers

By Kris Schanilec

An excerpt from the Fall 2016 edition of NightWalkers, the Foundation's quarterly magazine.

The American Academy of Sleep Medicine (AASM) launched the “Sleep Recharges You” campaign in August 2016 to help teens and families learn the facts about sleep, the benefits it brings to health and wellbeing, and the risks associated with not getting enough.

For teenagers in the United States, the sleep situation is “dire,” according to the AASM. The Centers for Disease Control (CDC) reported in April that 69 percent of teens surveyed said they sleep fewer than eight hours per night, on average (1). Yet the AASM recommends they get eight to ten hours of sleep for optimal health.

In June, the AASM published “Recommended Amount of Sleep for Pediatric Populations,” (2) a consensus statement developed by a panel of 13 sleep experts who reviewed 864 published scientific articles related to sleep duration and health in children. The recommendations align with guidelines previously published by the National Sleep Foundation and are endorsed by the American Academy of Pediatrics.

“Many children are not getting enough sleep,” says Shilini Paruthi, MD, who led the AASM panel. “The evidence is there that sleep deprivation has a huge impact on children’s ability to function, and function well during the day … and it’s preventable.”

Risks Associated with Too Little, or Too Much Sleep

In the consensus statement, the AASM reports the behavioral associations found with sleep deprivation, including attention, behavior and learning problems. Lack of sleep also increases the likelihood of hypertension, obesity, diabetes, depression, self-harm, suicidal thoughts and suicide attempts.

Lack of sleep also significantly increases teens’ risk of drowsy driving accidents, according to the AASM. The National Sleep Foundation likens the functional level of a drowsy driver to someone with a blood alcohol content of 0.8%, which is illegal in most states. And there is such a thing as too much sleep, per the studies reviewed by the expert panel. Regularly sleeping more than the recommended hours may be associated with hypertension, diabetes, obesity and mental health problems, according to the AASM statement.

In contrast, sleeping the recommended number of hours is associated with positive outcomes, such as improved attention, learning, behavior, memory, emotional regulation, quality of life, and mental and physical health.

Parents: Be on the Lookout for Sleep Issues

Families should watch for signs and symptoms of sleep deprivation in their teens. These may include problems with grades, attention and behavior at school – even athletic performance, according to Dr. Paruthi.

“Teens with too little sleep are at higher risk of injuries, and their recovery times from injury can be longer…. Sleep deprivation can also affect interpersonal relationships. Parents may see that children may not be getting along with others as well, or even at home,” she says.

When sleep is lacking, teens and their caregivers can take practical steps to get the right amount (see “How much sleep do children need?” at left below). If problems persist, then it’s time for families to make an appointment with a pediatrician – and if they aren’t getting sufficient answers there, then they should seek help from a board-certified sleep specialist.

“It’s very important that parents and clinicians suspecting sleep disorders take it seriously. Children do get sleep apnea, RLS and insomnia, and these can all be treated, even in children,” says Dr. Paruthi. “RLS is an example. A lot of kids are misdiagnosed with growing pains, and yet there are quite effective treatments.”

School Start Times Are A Factor

One of the drivers of sleep issues in teens is a change in circadian rhythm that typically occurs with puberty and shifts the body clock about two hours later in the 24-hour cycle. Yet even as their bodies crave the late nights, teens may still start school at 7:30 in the morning – or for schools that offer “zero period” classes, as early as 6:30 am.

In 2014, the American Academy of Pediatrics issued a policy statement recommending that middle and high schools delay the start of class to 8:30 am or later to “align school schedules to the biological sleep rhythms of adolescents.”

Some studies have shown a benefit from later start times. In a 2014 study involving eight public high schools in three states, schools that delayed their start times until 8:30 saw improvement in students’ academic performance and attendance. In one school, the number of teen car crashes decreased by 70 percent (3).

But a later start time can pose real challenges for communities – for example, in coordinating with bus schedules and family work schedules. The AASM encourages parents to present the recommendations to their local school boards and work with them to set optimal school start times so that teens can get the healthy sleep they need.

1 Wheaton AG, Olsen EO, Miller GF, et al. 2016. “Sleep Duration and Injury-Related Risk Behaviors Among High School Students–United States, 2007–2013.” MMWR Morb Mortal Wkly Rep. 2016 65(13): 337–41.

2 Paruthi S, Brooks LJ, D’Ambrosio C, et al. 2016. “Recommended Amount of Sleep for Pediatric Populations: A Consensus Statement of the American Academy of Sleep Medicine.” J Clin Sleep Med. 12(6): 785–6.

3 Wahlstrom, K., Dretzke, B., Gordon, M., et al. 2014. “Examining the Impact of Later School Start Times on the Health and Academic Performance of High School Students: A Multi-Site Study.” Center for Applied Research and Educational Improvement. St Paul, MN: University of Minnesota.

RLS is believed to afflict an estimated 1.5 million children and adolescents. Visit our website to access resources for teens and kids with RLS.

May 2, 2017

Research Funded by RLS Foundation is Getting Results

By Kris Schanilec

An excerpt from the Winter 2017 edition of NightWalkers, the Foundation's quarterly magazine.

From the seeds of an RLS Foundation grant, researcher Byron Jones, PhD, has grown a genetic reference population of mice that is poised to serve as an animal model for RLS research. In 2004, the RLS Foundation awarded Byron Jones, PhD, an $8,000 grant for a project to start a mouse colony that could be used in research to help identify RLS-related genes. Over the course of 12 years and many mouse generations, Jones has employed a genetic reference colony that not only has helped unearth three possible RLS genes, but also may provide a model for studying RLS and testing treatments. Jones’s program is summarized in a recent review article in Sleep Medicine (1).

“The human genome informs the mouse genome,” says Jones. “It’s partly tongue in cheek, but also serious. … Genetic information in the mouse is, 90 percent or better, the same as in humans.”

“We need to understand how things happen at the cellular, molecular level,” he says. “The drugs we use are superficial – not cures. I want to go after what is causing RLS, and how we can intervene to prevent this [disease]. You need to know how it works before you can cure it.”

BXD40: A Match for RLS Iron Regulation

In the RLS-funded project, Jones (then at Penn State) set out to find an inbred mouse strain whose genetics, when deprived of iron, produced the same biological characteristics (phenotypes) as RLS. He obtained mice known to be different in all kinds of phenotypes, and tested them for differences in their response to iron deficiency. Jones’s team studied over 30 strains of mice to identify a strain called BXD40 that met their criteria. When fed an iron-deficient diet, the BXD40 females showed great loss of iron in the substantia nigra region of the brain, but hardly any loss in the periphery – matching the iron deficiency profile of RLS in humans.

During the project, Jones was invited by Johns Hopkins researchers Christopher Earley, MD, PhD, and Richard Allen, PhD, to collaborate on researching genetics and iron regulation in the brain. Allen showed that BXD40 mice had phenotype characteristics the same as people with RLS – namely, altered sleep patterns and problems with their sensory systems.

This team identified three genes seemingly involved in iron regulation that were not previously known to play a role in RLS – among them, the gene BTBD9.

“We literally stumbled upon these mice, but it was a planned stumbling,” says Jones. “We struck a homer.”

Other scientists like Yuqing Li, PhD, an RLS Foundation grant recipient, at the University of Florida, are using these findings to further explore BTBD9 in genetic models of RLS.

A ‘Perfect Experimental Platform’

Jones subsequently was awarded two R01 grants from the National Institutes of Health – one to continue this work on genetic regulation of iron in the brain, and the other to study the effects of chronic stress on alcohol consumption. His research team (now at the University of Tennessee) has controlled breeding within the colony to create strains with fixed genotype so that all are genetically alike. They have grown the mouse colony, generation by generation, to include over 100 strains of mice. Jones calls this a “perfect experimental platform.” Scientists can now look at the effects of the different genes by going into the colony, choosing mice with a particular genetic profile, and testing them to answer scientific questions. Strains can also be tested in different laboratories to tease out the effects of environmental factors.

“We get remarkable replication of experimental results across all laboratories,” says Jones.

Matching RLS Behaviors and Response to Medication

In recent work, Jones and collaborator Erica Unger, PhD (at Lebanon Valley College in Anville, Pennsylvania), matched the BXD40 model with RLS behaviors. Unger analyzed the 24-hour activity levels of BXD40 mice compared with five other BX strains. The BXD40 showed that with dietary iron deficiency, the BXD40 mice had an increase in activity in the last part of their active cycle and first part of their rest cycle – matching the cycle of RLS symptoms in humans. No other strain showed this circadian change in behavior. Unger also tested this model with RLS medications. Preliminary data showed that treating the BXD40 animals with levodopa or quinpirole significantly reversed the decreased rest time and increased activity.

The result: a potential RLS animal model in the iron-deficient BXD40 mouse which shows the many characteristics of RLS in humans – iron regulation, behaviors, and response to dopaminergic drugs. Jones plans to use this animal model to build on his RLS research.

“We were able to find some animal verifications of what was going on with humans, and that’s always cool,” says Jones. “Now, if we find out how the protein BTBD9 operates in the brain in iron management, then instead of treating RLS with a dopamine agonist, we might find some agent that alters the expression of this gene.”

1 Allen RP, Donelson NC, Jones BC, Li Y, Manconi M, Rye DB, Sanyal S, Winkelmann J. “Animal models of RLS phenotypes.” Sleep Medicine 2016 Sep 2 (Epub ahead of print).

In 2016 the Foundation's Research Grant Program has pledged to increase its RLS research funding to $200,000 annually for up to eight pilot grants. Since 1997 The Foundation has funded nearly $1.6 million in competitive research grants for the study of RLS. Read more about the other funded research here.

Thank You to All of Our Volunteers!

On behalf of the RLS Foundation boards and staff, we want to thank each of our volunteers for all the contributions they have made in supporting the community of RLS sufferers. The compassion and hope they provide has resulted in positive feedback, and we are incredibly fortunate to provide this volunteer program to those who are looking for help, hope, and sometimes just an ear.

The RLS Foundation currently has over 70 support groups and a network of remote support contacts throughout the United States and Canada, not to mention a group of dedicated volunteer discussion board moderators. All of these individuals contribute to achieving our goal of spreading RLS awareness and providing support to those suffering with this disease.

"Spreading the word is crucial to increasing the awareness of this often misunderstood yet complex disease suffered by so many," Southern California RLS Support Group Leader Susan Schlichting said. "This awareness will aid in furthering the Foundation's goal of finding a cure. Volunteering is a way for me to take personal responsibility for my health while facilitating others to do the same."

We are always looking to expand our volunteer network, and to provide integral support and counsel to those in underserved areas. If you are interested in applying to become a support group leader, here are the steps:

1. Learn more about the role by viewing the support group leader description.  
2. Submit an application! 
3. The Foundation will send references a brief questionnaire.
4. Once reference questionnaires are returned, a volunteer manual is provided and a phone interview is scheduled.
5. You then plan your first meeting with the support from the Foundation!

Please submit your completed volunteer application through the volunteer page on our website, by email, or send to:

Restless Legs Syndrome Foundation

Attn: Chiara Corey

3006 Bee Caves Road, Suite D206

Austin, Texas

78746

Click here to find a support group near you. Stay up to date with upcoming meetings in the "Find Support" section of our website, or on our Facebook page.

Practice What You Preach

Submitted By: Mary Lou Mennona, support group leader for Kingsport, Tennessee, and contact for Treasurecoast, Florida

Every time someone calls me regarding RLS, one of the things I always tell them that I have learned from the RLS Foundation research is: Stay away from alcohol, caffeine and sugar after 6 pm and especially before bed. Having these things will make RLS worse.*

So, [we] went on a vacation cruise recently and I got caught up in the fun of the evening. At dinner I shared a glass of wine with others – the one and only I had – I usually don’t drink at all, and then had a luscious, sweet dessert because everything on the ship menu looked so good!

I completely forgot to practice what I preached to others about these things being a “no-no” to RLS victims, and sure enough, I had a miserable night even WITH taking my meds... In fact, it ran right into the next day as we tried to watch a matinee movie on the ship. I usually don’t need my meds during the day, but I was so jumpy and felt like a wound-up spring ready to explode, that I knew I bothered the people near me, so I left the theater and walked and took AN EXTRA med.

Not only that, but I felt horrible all over. Even my hair was tingling and I just didn’t want to do anything! Depression can set in. My nerves throughout my body were vibrating all over and would not rest. Be careful! What the Foundation teaches us through all the research is so true!

I couldn’t believe that I had ignored my own advice! I never have this kind of trouble because I always keep a close eye on what I eat, my exercises, etc.

For those with RLS, don’t ever forget the debilitating effects of sugar, alcohol and/or caffeine, and learn from the information in [the Foundation's] wonderful quarterly newsletter, NightWalkers!

* For more information on what may exacerbate RLS symptoms, read our RLS Triggers publication in the Member Portal of our website.

Had a similar experience? Share it with us on our Facebook page or on the Foundation's discussion board. You are not alone!

An excerpt from the Summer 2016 edition of NightWalkers the Foundation's quarterly magazine. This piece is from the reoccurring column "In the News" by Lynn Marie Trotti, MD, MSc

Restless legs syndrome & depression: effect mediation by disturbed sleep and periodic limb movements.

Koo BB, et al. American Journal of Geriatric Psychiatry. April 2016.

Background:

Prior studies have shown that RLS and depression are associated, such that people with RLS are twice as likely as people without RLS to have depression at some point in their lives. The reason behind this relationship is not known, but a number of theories have been proposed (which are not mutually exclusive): 1) RLS and depression could share a common underlying cause; 2) depression medications may trigger RLS symptoms (which, in a cross-sectional study, could explain an association between depression and RLS); 3) sleep disruption from RLS could cause depression; or 4) periodic limb movements in sleep (PLMS) could cause depression. This study was designed to evaluate the latter three possibilities.

Research:

The researchers used data from the large Osteoporotic Fractures in Men (MrOS) study of elderly men, which has been used in multiple prior RLS studies. Included participants were evaluated for RLS and depression. Measures of PLMS and estimates of sleep quality were performed with in-home sleep studies and wrist actigraphy (a measure of activity), respectively. RLS was present in 17 percent of the 982 men. Those with moderate to severe RLS were most likely to be depressed, took the longest amount of time to fall asleep, had the most disrupted sleep, and had the greatest PLMS. The presence of moderate to severe RLS increased the likelihood of depression by about three times. Disrupted sleep accounted for some, but far from all, of the relationship between RLS and depression. Periodic limb movements moderated the depression-RLS relationship, such that people with RLS and PLMS had more depressive symptoms than those without RLS, but this effect was not seen in those with RLS without PLMS. People with RLS who were taking antidepressants had fewer depressive symptoms than people with RLS and depression who were not on medications.

Bottom Line:

The relationship between depression and RLS is mediated, in part but not exclusively, by the sleep disruption that accompanies RLS. The relationship between RLS and depression is apparent in those with PLMS, but not in those without PLMS. In people who are depressed, antidepressants are associated with fewer depression symptoms despite the presence of RLS (that is, having RLS does not appear to prevent an antidepressant benefit of medications).

New Questions:

Given that sleep disruption only partially explains the RLS depression relationship, what other factors are important?

Genetic Connections Discovered Between Sleep and Some Medical Disorders

A recent study in December 2016 by a team of American and British researchers unearthed genetic connections between sleep disturbance and a range of medical disorders.

For the very first time, areas of the genome that are associated with sleep disturbance (like insomnia, excessive daytime sleepiness and restless legs syndrome) were identified, while also discovering new genetic links with several medical conditions, including RLS, schizophrenia and obesity.

How did they do it? Researchers studied the health and life history of more than 112,000 individuals taking part in the UK Biobank study. Participants reported their sleep duration, the degree of insomnia/daytime sleepiness, and then had their genes mapped. Health information including weight and disease diagnoses was also included. Researchers then compared the biological controllers of sleep duration, insomnia and excessive daytime sleepiness, and how these linked to the surveyed individuals.

These researchers discovered eight genes that may contribute to sleep issues - the first to be specifically linked to insomnia. Their findings revealed that a portion of the genes that are most strongly linked to sleep disturbances were also linked to RLS, insulin resistance, depression, schizophrenia and obesity.

This marks the first time that sleep disorders and these conditions have been connected at a molecular level, increasing our understanding of the relationship between biology and sleep.

The paper that resulted from the study, "Genome-wide association analyses of sleep disturbance traits identify new loci and highlight shared genetics with neuropsychiatric and metabolic traits," was published in the scientific journal Nature Genetics. The article is available for purchase.

Read the HealthCanal article to learn more about this groundbreaking discovery!

Karla Dzienkowski Celebrates Three Years at Foundation

This year Karla Dzienkowski, RN, BSN, celebrates her third year as executive director of the RLS Foundation. Since taking on the role, Karla has brought the Foundation into a new era, developing programs and nurturing relationships that make significant strides in spreading awareness, providing support, and finding a cure for RLS.

Karla first began her relationship with the Foundation in the early 2000s, becoming a member and supporter of the Foundation after her daughter was diagnosed with severe RLS. As soon as she finally heard the diagnosis, Karla set three goals for her daughter: 1) To become knowledgeable about the disease, 2) to learn how to manage her symptoms, and 3) to advocate for herself. Fortunately, the RLS Foundation provided information to get the help that she and her family needed. Even today as executive director, Karla has made it a personal goal to support children impacted by RLS, developing publications so that kids can better understand this disease and take charge of their symptoms.

Eventually, Karla served for six years as a member of the Foundation's Board of Directors. Karla spent several months in Rochester, Minnesota, the Foundation headquarters, to train and transfer knowledge from the retiring staff to the newly recruited staff. The new and old team packed up the office for relocation, and Karla and her husband then drove a moving truck over 1,000 miles to the Foundation's new home in Austin, Texas.

Karla is a registered nurse, and has extensive nonprofit and volunteer experience. In addition to her years on the Foundation's Board of Directors, Dzienkowski also served as board president of an Austin, Texas chapter of the National Charity League, Inc., a mother-daughter philanthropic organization committed to community service, leadership development and cultural experiences. Karla has a passion for cooking (keeping everyone at the Foundation office well-fed!) and is a dedicated Pittsburgh Steelers football fan and eternal optimist. She spent many years as a school nurse while her daughters were in school, but her role as mother and wife have always been her first priority. She works tirelessly for the Foundation because Karla is truly dedicated to its mission.

"Karla possesses an energy that radiates throughout the office and infects us all," Membership Coordinator Faith Duncan says. "She leads a trifecta of boards, constituents and staff, and does so with relative ease. One might find it difficult to manage business executives, renowned physicians, Foundation staff & RLS sufferers (each requiring a different 'touch'), but Karla quite competently wears many hats and accomplishes this like a true champ."

Karla's drive to find a cure, in addition to her personal experience with RLS, is what makes her a distinguished leader who inspires all she works with. She is selfless, consistently leading with extreme dedication and passion, and always puts her constituents first. When any person calls or writes in with stories of frustration, often at wit’s end, Karla takes the time to reach out to each individual, listen with sincere compassion, and assist them in outlining steps to a solution.

On behalf of the Foundation and the RLS community, we thank you Karla!