Restless Legs Syndrome Foundation Blog

Welcome Denise Sharon, MD, PhD, FAASM and J. Andrew Berkowitz, MD to the Scientific and Medical Advisory Board.

Denise Sharon, MD, PhD, FAASM

Dr. Sharon graduated in 1981 from the Sackler School of Medicine, Tel-Aviv University in Israel. After completing her Residency in Psychiatry, she continued her studies in Clinical Psychology at Temple University in Philadelphia, Pennsylvania. In 1991, Dr. Sharon gave her dissertation on the “Use of ECT in depressed elderly,” and received Certification in Psychology by the American Association of State and Provincial Psychology Boards in 1992.

Following her extensive education in Psychiatric Medicine and Clinical Psychology, Dr. Sharon began her training in Sleep Medicine through the Department of Psychiatry and Health Behavior MCG/VAMC in Augusta, GA from 1993-1995. She trained with the Sleep Medicine Associates of Texas in Dallas, Texas; worked as an Independent Contractor for Sleep Consultants, Inc. in Fort Worth, Texas; and worked as a Sleep Specialist for Sleep Medicine Associates of Texas in Dallas, Texas after becoming certified on Sleep Disorders by the American Board of Sleep Medicine in 1997 and receiving her credentials as a Fellow of the American Academy of Sleep Medicine.

Next, Dr. Sharon took her expertise to Louisiana where she worked as a Sleep Specialist for Tulane Hospital and Clinics (1999-2005) and Premier Sleep Medicine Center (2003-2006), while being appointed as a Sleep Medicine Fellowship Program Co-Director for Tulane School of Medicine in New Orleans, Louisiana in 2002. Meanwhile, she held a role as the Clinical Director of the Advanced Sleep Center in Metairie, Louisiana from 2005-2018.

Throughout her education, training and work, Dr. Sharon has amassed research experience including, but not limited to, work as a Research Associate/Quantitative Electroencephalographer in the Laboratory of Psychoelectrophysiology, Department of Psychiatry and Health Behavior through MCG. Her research has been published in numerous journals, as well as industry supported pieces on Restless Legs Syndrome for Pfizer, Xenoport, Luitpold, and more.

Dr. Sharon’s contributions to Sleep Medicine do not stop there. She has been involved in multiple committees for the American Association of Sleep Medicine (AASM), such as the Center Accreditation, Fellowship Accreditation, Nosology Committees and Movement Disorders Section (vice-chair). She is a member of the International Restless Legs Syndrome Study group. and the American Academy of Sleep Medicine Task Force on the update of the treatment of RLS and PLMD; just another way in which she is helping those with RLS.

Today, Dr. Sharon works as an independent consultant out of the Sleep Disorders Adult and Children Center of the Pomona Valley Medical Center in Claremont, CA. Needless to say, with her impressive background and endless efforts to further the understanding of RLS in the field of Sleep Medicine, we are excited to welcome Dr. Sharon to the Scientific and Medical Advisory Board.

J. Andrew (Andy) Berkowitz, MD

Dr. Berkowski is an Assistant Professor at the University of Michigan and an expert in RLS. He cares for patients in the Sleep Disorders Center in Ann Arbor, Michigan; addressing a wide range of sleep disorders in adults.

Before receiving Board Certification in Sleep Medicine and Neurology, Dr. Berkowski earned his bachelor’s degree in religious studies at Stanford University. Next, he returned to his home state of Michigan to study medicine—graduating from Wayne State University School of Medicine in 2010. By 2014, he completed a transitional year internship at Henry Ford Hospital and neurology residency training at the Detroit Medical Center/Wayne State University. And in 2015, Dr. Berkowski completed his fellowship training in sleep medicine at the Stanford University Medical Center.

With a diverse background and clinical and research interests in RLS, we are thrilled to add Dr. Berkowski as a member of the Scientific and Medical Advisory Board.

Spreading RLS Awareness Through Sacred Threads

By Zibby Crawford

Three striking quilts hang on the walls of the RLS Foundation in Austin, Texas. More than a decoration, they are a unique and powerful tool for RLS Awareness. Starla Phelps, an RLS Foundation member since 1994, is the artist that created each quilt to be displayed across the country at quilt shows sponsored by Sacred Threads, a nonprofit organization that exhibits quilts to inspire healing and strength.

RLS Dancing

The Foundation received the first quilt called “RLS Dancing” in 2014. In this quilt, Starla expresses her experience living with RLS both through embroidered images and a poem that she wrote to describe the sensations and how RLS affects her life in so many ways.

An accomplished quilter, Starla found her inspiration for the quilt in a magazine that featured a dancer. Her severe RLS has her constantly moving her legs to relieve her symptoms – “dancing around the house” to draw her mind away from the discomfort.

“The poem is trying to express what anyone might have (people have this in varying degrees) and also to express the fact that I love my husband, but he’s sound asleep and I’m up. I don’t want him to be up and miss sleep, but it’s upsetting to be out there again, and nobody is there with me.”

On the quilt, the text is surrounded by dancing figures and many panels with hand-embroidered scenes of activities like laying on the beach, sitting on an airplane, using a computer, and dining – “all the things I can do when I have the RLS drugs, but that I cannot do without them,” says Starla.

The back of the quilt includes printed fabric showing women playing sports. “One thing I’ve found is that you need to have some exercise, but if you have too much, it backfires on you, so there’s a fine line.”

Forward

“Forward” is the theme of another quilt Starla exhibited with Sacred Threads in 2015, before donating it to the Foundation.
“I look forward to SLEEP after years with minimal amounts of sleep due to a brain disease commonly known as RLS,” says Starla in an artist’s statement accompanying the quilt in the exhibit. “Treatment has not been very helpful, but I am now undergoing another treatment and I have to be hopeful for the future – going forward into the future.”

The fabric and quilting use “zzz” patterns to represent the “many nights that I spend trying to quilt when I am so exhausted, but can’t sleep.”

Along with her description of the quilt, Starla included information about “What is RLS” to raise awareness and understanding of RLS to all who viewed the Sacred Threads exhibit.

Hope

“Research = HOPE” is the theme for the most recent quilt Starla presented to the Foundation, during the recent, well-attended RLS Advocacy Day on Capitol Hill in Washington, DC. Starla included a summary with her quilt that stated, “My greatest personal HOPE is that someday a cure will be found, and a worldwide recognition and understanding of RLS.”

To describe her art, Starla writes: “The words around the legs and brain are the words that RLS sufferers use to describe this difficult disease. The RLS Foundation was founded in 1992 to actively provide education, fund research, establish RLS Quality Care Centers, and ongoing involvement in RLS outreach. I have donated two other quilts to the RLS Foundation; and this quilt will also go to them. My goal is to encourage quilters and other artists to begin creating art that demonstrates to the viewer the horrible nature of this disease. I hope that soon the public will help to fund research. Since the disease is so difficult to explain, it is overlooked when people donate money to causes.”

Starla’s journey with RLS began with childhood symptoms that went undiagnosed until she was in her thirties and, at a Christmas party, her husband fell into conversation with a woman who was moving her legs and calling it RLS. With this information in hand, Starla went to see a neurologist and was diagnosed with the disease.

Starla urges others to share their experiences through art. She says making these quilts is cathartic, but more importantly, it has helped to educate, comfort and inspire others who have the disease.

Starla holds a degree in fashion design, is a race car instructor and driver, served on the RLS Foundation Board of Directors and worked for many years as a certified public accountant. Starla and her very supportive husband, Fred, live in the Washington DC area.

New Study Funded by RLS Foundation

By Kris Schanilec

The RLS Foundation has awarded a grant of $36,398 to Sergi Ferré, MD, PhD, of the National Institute on Drug Abuse, for a study to explore how opioid medications work in the brain to relieve RLS symptoms. This research builds on several Foundation-funded studies previously conducted by Dr. Ferré, who is a member of the RLS Foundation Scientific and Medical Advisory Board.

“Dopamine agonists, alpha-2 delta agents and opioids are highly effective in treating RLS,” says Christopher J. Earley, MB, ChB, PhD, FRCPI, chair of the Scientific and Medical Advisory Board. “Dr. Ferré’s grant is the first to try and understand the biologic elements that may be common to these three classes of drugs that makes them so effective in treating RLS, thus opening the door for future drug development.”

Opioid medications act on three types of opioid receptors in the brain. One of these – the mu opioid receptor – is the target of the opioid medications, such as methadone, that are a very effective treatment for severe RLS when used in low total daily doses. RLS is a neurological disease that has a distinctly different underlying neuropathology than that associated with typical pain syndromes. Clinical experience among experts who use opioids to treat severe RLS has not shown the degree of drug misuse, dependency or addiction that is commonly associated with opioid use to treat chronic pain.*

In the current study, “Elucidating the mechanisms of the therapeutic effects of opioids in RLS,” Dr. Ferré’s team aims to identify the locations of mu opioid receptors involved in improving RLS symptoms with opioids. With this information, they hope to determine if specific opioid medications could selectively act on these mu opioid receptors, reducing the risk of unwanted side effects.

In previous studies funded by the RLS Foundation, Dr. Ferré’s laboratory developed an animal model for RLS using a brain iron-deficient rodent that models the brain iron deficiency that is characteristic of RLS in humans. Their model combines two techniques, optogenetics and microdialysis, to trigger and measure the release of glutamate from brain cells in live animals. The researchers used this model to confirm that brain iron deficiency increases the release of glutamate in the brain area known as striatum; other studies have reported increased glutamate in the RLS brain.

Dr. Ferré’s team also validated that several RLS drugs – the dopaminergic drugs pramipexole and ropinirole, and the alpha- 2-delta ligand gabapentin – work by counteracting this high release of glutamate. In addition, the researchers pinpointed a subtype of receptor in the brain – the dopamine D4 receptor – as a main target for the effects of the dopaminergic drugs in the striatum, and therefore, as a new target for drug development.

In a more recent study, Dr. Ferré’s laboratory reported that low levels of receptors of the neurochemical adenosine are responsible for the high levels of glutamate released in the striatum. This finding has led to exploration of drugs that increase adenosine levels in the brain – for example, dipyridamole – as a new treatment approach for RLS. According to Dr. Ferré, the reduced levels of adenosine receptors (specifically, the adenosine A1 receptors) may be the underlying cause of not only restless legs, but also the state of enhanced wakefulness (hyperarousal) experienced by people who have RLS.

In the current study, the researchers will focus on a specific neuron in the striatum, the cholinergic interneuron, which releases the neurotransmitter acetylcholine and has a high number of both adenosine A1 receptors and mu opioid receptors. The researchers hypothesize that in RLS, there are fewer adenosine A1 receptors in these cholinergic interneurons, which therefore become overactive and release more acetylcholine. The researchers also hypothesize that opioids should be able to counteract this by activating mu opioid receptors in the cholinergic interneurons. Dr, Ferré’s team will use its animal model to explore these questions.

“If the results of the study confirm our hypotheses, we will have probably found the main mechanism of the therapeutic effect of opioids in RLS,” says Dr. Ferré. “Those results would then stimulate the search for opioids with a preferential efficacy for the mu opioid receptors localized in the striatum, in the cholinergic interneurons, which should be absent of unwanted side effects.”

The RLS Foundation is grateful for the generosity of individuals whose financial gifts make this work possible, says Executive Director Karla Dzienkowski. “The Foundation’s research grant program is dedicated to find better treatments and, ultimately, a cure for RLS. This study will help us to understand why opioid medications are effective at relieving severe, unrelenting symptoms of restless legs syndrome, which will lead to an improved quality of life for people with RLS,” Dzienkowski says.

*If opioid therapy is a treatment option to manage your RLS symptoms, your healthcare provider will work closely with you to find the dose that manages your symptoms while minimizing side effects of therapy.

CBT-I Just Might Help

By Régis Langelier, PhD

As many of you know, those of us who are “NightWalkers” have not only RLS, but also the insomnia that comes with it. All who endure RLS have some learned coping expertise; however, we also need new ways of thinking and strategizing for revitalization!

Now there is something proven to help: cognitive behavioral therapy for insomnia (CBT-I) – a treatment primarily given by specialized, doctoral-level psychologists. In 2016, the American College of Physicians finally recommended CBT-I as a first-line therapy for chronic insomnia,¹ officially endorsing the combined finding of data from multiple studies (meta-analysis).² CBT-I is proven to be the best treatment for chronic insomnia disorder, works as well as sleep medications and has the added benefit of fewer or no adverse effects. I use CBT-I every day, and so can you.

RLS and insomnia pose daily challenges to well-being

RLS is a complex, neurological and torturous affliction. Just by itself, it creates fragmented and diminished sleep; constant fatigue (often an RLS trigger); sometimes an inability to relax during the day; disruption of life’s pleasurable activities; impaired behavioral, emotional and cognitive functioning; and trouble with common activities such as driving, or attending a play or movie.

Insomnia is associated with one or more of the following symptoms: difficulty initiating sleep; difficulty maintaining sleep (characterized by frequent awakenings, or problems returning to sleep after awakenings); and early morning awakening with the inability to return to sleep. In chronic insomnia, sleep disturbance causes clinically significant distress or impairment in important areas of functioning, occurs at least three nights per week, and is present for at least three months. Chronic insomnia is linked to an increased risk of developing a number of physical and mental disorders, including but not limited to high blood pressure, heart disease, diabetes, chronic pain, work-related accidents, major depression, alcohol and substance abuse, and trouble with memory, concentration and performance.

Population-based estimates indicate that in general, about one-third of adults report insomnia symptoms³; in comparison, the prevalence in people with RLS is much higher (48–60 percent).⁴ Regardless of whether their RLS symptoms are relieved by medication, many patients continue to have sleep issues and other health problems. They also may be plagued by anxiety and depression, plus suffer from a sense of despair. RLS is invisible to our friends and others, as is insomnia. Often such unseen maladies contribute to feelings of isolation, to overwhelming stress, to chronic relaxation problems and to unique or quaint (soap under your pillow as a placebo?) coping strategies. Medications are not proven to be a universal answer. Coping and improvement are usually best achieved by medical evaluation and creating an individually tailored strategy that may include drug and/or nondrug treatments.

Poor sleep is partly learned and partly inherited. Factors known to contribute to sleep issues are age, pain, medical conditions, drugs, substance abuse, fear, financial insecurity, difficult work/living conditions, trauma, poverty and relationship problems –to name just a few common culprits. RLS and insomnia combined pose a much greater daily challenge to living well, and to achieving happiness!

Something proven to help: CBT-I

CBT-I is a set of strategies that helps modify thoughts, beliefs and behaviors that interfere with sleep and life. Although this therapy doesn’t work as quickly as sleep aids (which remain the most popular treatment for insomnia, despite publicized concerns about safety and efficacy), CBT-I is an evidence-based therapy that can be effective and enduring, especially by increasing shuteye time in stages 3 and 4 of sleep (slow wave sleep, and deep sleep). CBT-I improves mood and is particularly effective in mitigating excessive sleep effort – the common tendency to try too hard to make sleep happen. (Who hasn’t experienced this?)

CBT-I typically involves a sequence of eight or fewer sessions with a trained psychologist, and includes the following elements:

Sleep Assessment. The provider conducts a comprehensive evaluation and history of sleep problems, physical and mental health issues, substance use (including caffeine), daily sleep diary profiles, the Insomnia Severity Index score (mild to severe), and the Sleep Efficiency Index result (total time in bed actually spent asleep).

Sleep Education and Sleep Hygiene. This part of CBT-I addresses normal sleep and its stages, sleep regulators such as circadian processes, arousals from sleep, environmental conditions, and sleep hygiene recommendations. Screen time, Starbucks stops, and the nightly wine or beer are also added up on the “sleep trouble” scale.

Stimulus Control and Sleep Restriction Therapy.⁵ These strategies aim to strengthen cues for sleep, reduce cues that interfere with sleep, reduce the amount of time spent awake in bed each night, and associate one’s bed with falling asleep quickly. Stimulus control instructions are:

• Lie down intending to go to sleep only when you are sleepy.
• Do not use your bed for anything except sleep and intimacy.
• If you are unable to fall asleep within 20 minutes, then get up, go to another room and return to the bedroom when you are sleepy again. Do this as often as necessary throughout the night.
• Get up at the same time every morning, regardless of how much sleep you had during the night. This will help the body acquire a consistent sleep rhythm.
• Keep active during the day and avoid naps (except for a limit of 30 minutes when sleepiness might cause harm).

Sleep restriction is designed to increase the drive for sleep (i.e., tiredness) and is used in combination with stimulus control instructions and cognitive therapy. If you never fall asleep before midnight, but your bedtime is 10 pm, then go to sleep at 11:45 pm. This will limit or restrict the time you are “trying” to fall asleep. Also set up a wake-up time. This is typically seven to eight hours after your bedtime, even if you have a terrible night’s sleep.

Relaxation Training. This training reduces physical arousal and muscle tension, slows down the heart rate and breathing, and slows a racing mind. Approaches might include diaphragmatic breathing, visual imagery, and mindfulness-based stress reduction.

Cognitive Techniques, or cognitive restructuring. This therapy addresses misconceptions about the causes and consequences of insomnia, unrealistic sleep expectations, and negative automatic and sometimes catastrophic thoughts about sleep. It is important to challenge those thoughts and beliefs by identifying more realistic substitutes for them. In this therapy, negative thoughts (make your own list) such as “I am never going to fall asleep” or “I won’t cope tomorrow” or “I have no control over this racing mind” are treated, challenged and restructured by realistic thoughts: “I always fall asleep eventually” or “I will be tired tomorrow but will get through it as always” or “I am not alone – at least two in five people with RLS have sleep trouble.” Time is scheduled during the day to address anticipated worrisome bedtime thoughts and to practice relaxation. CBT-I providers typically provide handouts on cognitive techniques for patients to take home with them.

CBT-I considerations

A combination of CBT-I and RLS medication might be necessary to address the sleep disturbances and severe RLS symptoms. This combination can make the difference between frustrating torture, and some measure of success. With conditions such as depression, studies2 show that compared with antidepressant medication alone, CBT-I in conjunction with these medications can significantly reduce depressive symptoms and increase insomnia remission rates.

Sleep restriction therapy has been found effective for older adults (not for children) but is contraindicated for specific types of depression (e.g., bipolar disorder) and may at first increase anxiety. For this reason, sleep restriction therapy is optional for individuals who have post-traumatic stress disorder. Skip sleep restriction therapy if it doesn’t seem right for you.

Finally, although CBT-I can be conducted in groups or online, research to date on CBT-I outcomes has focused on in-person treatment.² However, time demands, health issues and transportation issues encourage remote consults (telepsychology) by specialized psychologists to treat RLS and insomnia.

In summary, CBT-I offers an effective, evidence-based protocol to improve sleep profiles for children and adults who have RLS. If you would like to explore this therapy, talk with your health care provider about whether this treatment may be right for you.

Régis Langelier, PhD, is a practicing, licensed psychologist in southern Maine offering CBT-I in-person and by remote consults. He is a behavioral medicine specialist, and a past clinical associate professor of psychiatry at the University of Vermont, Burlington. Langelier formerly served as treasurer of the RLS Foundation Board of Directors, was a support group leader for 10 years, and currently volunteers as an RLS support contact.

¹ Qaseem A. “Management of Chronic Insomnia Disorder in Adults: A Clinical Practice Guideline from the American College of Physicians.” Annals of Internal Medicine, July 19, 2016.
² DeAngelis T. “Behavioral Therapy Works Best for Insomnia.” Monitor in Psychology Vol 47, No 9, October 2016.
³ DSM-5 Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, American Psychiatric Association, Washington, DC, 2013.
⁴ Lee HB, Buchfurer MJ, Allen R, Hening WA. Clinical Management of Restless Legs Syndrome, Second Edition, Professional Communications, Inc., NY, 2013.
⁵ Bootzin RR, Epstein DR. “Understanding and Treating Insomnia.” Annual Review of Clinical Psychology 7, 11.1–11.24, 2011.