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NIGHTWALKERS In search of a good night’s sleep

Winter 2015

Stanford Certified
as WED/RLS
Quality Care Center
Page 3
Foundation
Headquarters
Move to
Austin, Texas
page 5

Medical
Marijuana and
WED/RLS
page 8

Massage
Therapy:
An Update
page 11

Pain and
WED/RLS
page 15
formerly known as the RLS Foundation
From the Director
NightWalkers is the official
Exploring Diverse Topics to
publication of the Willis-Ekbom Serve Our Community
Disease (WED) Foundation

Board of Directors In this time of technological advances in communication,


Jacquelyn Bainbridge, PharmD, Chair NightWalkers newsletter remains a constant for the Foundation to
Lewis Phelps, Vice Chair and Treasurer
Linda Secretan, Secretary
share information with our members on topics that are of interest to
Michael Brownstein, MD, PhD the WED/RLS community. This issue is no exception.
John McDevitt, PhD
James Schaeffer, PhD
Robert (Bob) H. Waterman, Jr. Readers will notice that we have included two articles on a subject that
Michael Zigmond, PhD some readers may consider controversial: medical marijuana. As you
might expect, we have received many requests from our members and
Medical Advisory Board
Birgit Högl, MD, Chair others concerning this subject, and our coverage is intended to
Daniel Picchietti, MD, Vice Chair illuminate some of the issues surrounding medical marijuana.
Diego Garcia-Borreguero, MD, PhD
Jennifer G. Hensley, EdD, CNM, WHNP
Suresh Kotagal, MD Be assured that the WED Foundation and its advisory boards take no Karla M. Dzienkowski, RN, BSN
Clete Kushida, MD, PhD, RPSGT position, for or against, the use of medical marijuana for WED/RLS. Executive Director
Mauro Manconi, MD, PhD
William Ondo, MD
As always, decisions on any treatment plan should be the result of individual discussions between those
Abdul Qayyum Rana, MD, FRCPC living with the disease, their doctors, and others whose opinions they trust.
Michael H. Silber, MB, ChB
Lynn Marie Trotti, MD, MSc
Arthur S. Walters, MD In this issue of NightWalkers, we are also very excited to announce the relocation of our offices to Austin,
John Winkelman, MD, PhD Texas. Austin is a vibrant, growing city with an expanding medical community. We look forward to
Scientific Advisory Board
leveraging our connections locally – as well as nationally and internationally – to build a better future for
James R. Connor, PhD, Chair people who have WED/RLS.
Michael Aschner, PhD
Marie-Francoise Chesselet, MD, PhD
Christopher J. Earley, MB, BCh, PhD, FRCPI
We have pulled together a great team in Austin: Faith, Mary, Zibby and I look forward to serving you,
Emmanuel J. Mignot, MD, PhD our members.
Claudia Trenkwalder, MD
George Uhl, MD, PhD
You are not alone,
Executive Director
Karla M. Dzienkowski, RN, BSN

NightWalkers is published in the winter,


spring, summer and fall. “Ask the
Doctor” questions, “Bedtime Stories,”
address changes, contributions and
membership inquiries should be sent to: Karla M. Dzienkowski, RN, BSN
NightWalkers, WED Foundation Executive Director
3300 Bee Caves Road Willis-Ekbom Disease Foundation
Suite 650, #1306
Austin, TX 78746

The WED Foundation does not endorse or


sponsor any products or services.

©2015 Willis-Ekbom Disease Foundation


Editors: Karla M. Dzienkowski , Kris Schanilec
Medical Editor: Mark Buchfuhrer, MD,
FRCP(C), FCCP

Warning and Disclaimer


Persons suspecting that they may have
WED/RLS should consult a qualified
healthcare provider. Literature that is
distributed by the Willis-Ekbom Disease
Foundation, including this newsletter, is
offered for information purposes only and
should not be considered a substitute for
the advice of a healthcare provider.

2 I NIGHTWALKERS www.willis-ekbom.org
Quality Care Centers
Stanford Certified as WED/RLS
Quality Care Center
The WED Foundation has certified the Stanford Center for Sleep The Johns Hopkins Center for Restless Legs Syndrome
Sciences and Medicine as a WED/RLS Quality Care Center. 5501 Hopkins Bayview Circle • Baltimore, MD 21224
Stanford is the fifth institution to join the WED Foundation 410-550-0574
program. Contact: Robin Fishel
rfishel2@jhmi.edu
The Stanford Center for Sleep Sciences and Medicine is a renowned Certified healthcare providers:
sleep center recognized for outstanding patient care and innovative Christopher J. Earley, MB, BCh, PhD, FRCPI
research. Juliane Winkelmann, MD, is a member of the Center. “As Richard P. Allen, PhD
the birthplace of sleep medicine, Stanford has driven considerable
growth in sleep research and treatment. Our partnership with the Mayo Clinic Center for Sleep Medicine
WED Foundation will help improve the quality of life for 200 1st Street SW • Rochester, MN 55905
individuals living with Willis-Ekbom disease by guaranteeing the 507-538-3270 (central appointment office)
highest standard of care,” says Dr. Winkelmann. www.mayoclinic.org/sleep-center-rsrt/appointments.html
Certified healthcare providers:
The WED Foundation is establishing a network of certified Bradley F. Boeve, MD
WED/RLS Quality Care Centers to improve diagnosis and Suresh Kotagal, MD
treatment of the disease worldwide. Provider certification requires a Mithri Junna, MD
high level of expertise and experience treating WED/RLS patients. Melissa C. Lipford, MD
The program benefits patients and families through: Michael H. Silber, MBChB
Erik K. St. Louis, MD
• Recognition of clinics as leaders in the field and as specialty centers Maja Tippmann-Peikert, MD
for patients who are traveling or in search of knowledgeable
healthcare providers The University of Texas Health Science
• Availability of clinic staff as information resources for referring Center at Houston (UTHealth)
primary care providers 6410 Fannin Suite 1014 • Houston, TX 77030
• Patient educational offerings, print materials and connections with 832-325-7080 (Department of Neurology)
WED Foundation local support groups Certified healthcare provider:
William G. Ondo, MD 
“Access to a higher quality of care is vital,” says WED Foundation
executive director Karla Dzienkowski. “We are pleased to welcome Innsbruck Medical University
such a distinguished group of physicians and researchers to our Department of Neurology, Sleep Lab and Sleep Disorders
Quality Care Center program.” Outpatient Clinic
Anichstr. 35, 6020 • Innsbruck, Austria
To learn more about the WED/RLS Quality Care Center + 43 512 504-23890
Program, visit willis-ekbom.org/quality-care-program. Contacts: Maria Kuscher, Cesarie Ndayisaba,
Manuela Oberlechner
WED/RLS Quality Care Centers schlaf-neurologie@i-med.ac.at
Certified healthcare providers:
Stanford Center for Sleep Sciences and Medicine Birgit Högl, MD
450 Broadway Street Birgit Frauscher, MD
Pavilion B, 2nd Floor, MC 5730 • Redwood City, CA 94063 Elisabeth Brandauer, MD
650-723-6601 (central appointment office) Thomas Mitterling, MD
Certified healthcare providers:
Clete Kushida, MD, PhD, RST, RPSGT
Christian Guilleminault, MD How You Can Help Improve WED/RLS Treatment
Chad Ruoff, MD You can help support improved diagnosis and treatment of
Mark Buchfuhrer, MD, FAASM WED/RLS my making a designated gift to our Quality Care
Kathleen Poston, MD, MS (Neurology) Center program. To learn more, visit www.willis-ekbom.org
or call 512-366-9109.

www.willis-ekbom.org NIGHTWALKERS I 3
WED Foundation News
Remembering
Juanita Therrell
Juanita W. errell passed away on “Juanita was a pioneer in bringing awareness to the condition
December 9, 2014. Juanita was a restless legs syndrome. As the first support group leader, she
founding member of the WED provided a forum for individuals living with WED/RLS to
Foundation (then the RLS Foundation), share their experiences. e Foundation is thankful for Juanita’s
served on the board of directors and service to our organization and the WED/RLS community.”
started the first WED/RLS support Karla M. Dzienkowski, RN, BSN
group, named Sleepless in Seattle. In
addition to teaching school and raising a “She was a dynamic, talented, enormously hardworking
family, Juanita started the library at woman on the board of directors and with support group
Juanita W. errell Newport Covenant Church in Newport, leaders. I know she suffered greatly with RLS. I remember
Washington, which she ran for 19 years. Juanita with great respect and admiration.”
She greatly enjoyed landscaping with both native plantings and Sheila Connolly
ornamentals, including the propagation of thousands of
trilliums. “Juanita was one of the few whose name was mentioned with
Virginia, Pickett, Art and Richard. She was clearly one of a
An avid supporter of the Foundation and others affected by few pillars and will be truly missed.”
WED/RLS, Juanita touched the lives of countless people in Robert Balkam
the WED/RLS community. She will be greatly missed.
“I was very sorry at the passing of Juanita errell. I communicated
with her many times by email and had the pleasure of getting to
know her personally at national meetings. She was always friendly
Give to the Max and encouraging to our own personal work on restless legs
syndrome… She stands as one of the original RLS pioneers…
Raises $21K She was active in advocating for the WED/RLS community.
She will be missed.”
We are so pleased with the response to this year’s “Give Arthur S. Walters, MD
to the Max” challenge on November 13. anks to the
generosity of our friends who provided matching funds
and to over 50 individuals who made donations through
givemn.org and our website, we exceeded our goal and
raised $21,641.10 in just one day!
Honor Roll
is support will help us continue serving your kids,
The Willis-Ekbom Disease (WED) Foundation is sincerely grateful for the
families, neighbors and friends who have WED/RLS, donations we have received in memory and in honor of the following
and shows just how strong we are when we band together. individuals from October 29, 2014, to January 9, 2015:
To everyone who participated, thank you!
In Honor of: In Memory of: Earl G. Wogoman
Liv & Einar Asbo Jane L. Bourn Joyce L. Zuhlke
Randi Borofsky Jim Briggs
Lauren Canning Judy Burke
Lisa S. Cressman Bud Dillihunt
Joseph Dill Evelyn Dunn
Karla Dzienkowski Luise “Liesel” Engelbert
Joan Elder Beverly W. French
Cindy Harris Phyllis Hunn
Gordon Haughey J. Maurice Nevins
Robert Krausz Mrs. Stanley Pearce
Trevor Payne Brenda T. Stotts
Ezra Pound Alberta Terlouw
Jerry Vulstek Juanita Therrell
Elizabeth L. Tunison

4 I NIGHTWALKERS www.willis-ekbom.org
WED Foundation News
Foundation Moves Headquarters to Austin, Texas
By Lew Phelps
Vice Chair and Treasurer, WED Foundation Board of Director

The Willis-Ekbom Disease Foundation has moved its


headquarters to Austin, Texas.

Over the past year, I have led a task force on the Board of
Directors to evaluate the best location for the headquarters of
the Foundation. We considered many alternatives, including
staying in Rochester, moving to the area around our nation's
capitol, moving to an area with a large-scale medical research
community (that is, Boston or San Francisco) and moving to
Austin, Texas.

Ultimately, the board decided that Austin has the most to offer
our Foundation – not only because it is the home of our current
executive director, Karla Dzienkowski, but also because it is a
major center for medical research, a location with a highly
educated and committed workforce, and a community with a
very strong support system for nonprofit organizations like ours. Moving an organization halfway across the country can present
challenges, but so far we’re meeting those challenges head on.
The Foundation has historically established its headquarters We have purchased used furniture from another nonprofit
based on the residence of its executive director. We were organization, saving thousands of dollars. We are transitioning
originally headquartered in North Carolina, because that is our entire computer data storage and services system from the
where the executive director, Carolyn Hiller, lived. When she old (and failing) hardware-based system in Rochester to an
moved to Rochester, Minnesota, we moved the organization Internet-based system (in “the cloud”) for a more reliable and
with her. Following that pattern, and in light of recent staff secure IT solution. We were able to engage a nonprofit
changes, Austin made the most sense. organization in Atlanta to manage the data transfer project at a
much lower cost than any commercial service providers that
The Foundation has benefitted greatly from a long-standing provided bids.
relationship between Karla and National Charity League, Inc.
(NCL). If you’re not familiar with the NCL, I urge you to visit The final move from Rochester to Austin took place in January,
www.nationalcharityleague.org to learn more about this when paper records, some office equipment, and other useful
remarkable philanthropic organization. They foster mother- resources were transferred to our new location. A big thank you
daughter relationships and are committed to community to John and Karla Dzienkowski for their countless hours
service, leadership development and cultural awareness. devoted to making this move successful, not to mention the
Through her past work as president of the Texas chapter of cross-country trek!
NCL, Karla has built a solid network of local relationships and
resources that will, coupled with those already established Our new phone number is 512-366-9109. Phone calls to our
nationally and internationally, provide a large pool of support to Rochester number will be transferred automatically to our new
the Foundation going forward. offices in Texas for several months.

Our new offices are in an office suite in a desirable Austin The Foundation’s new mailing address is:
location. We are leasing 640 square feet of space and have 3300 Bee Caves Road
unlimited access to conference room, kitchen, reception and Suite 650, #1306
other areas that are shared by tenants in the office complex. Austin, TX 78746
This new space will meet our organizational needs at a lower Tel: 512-366-9109
cost than our Rochester lease.

www.willis-ekbom.org NIGHTWALKERS I 5
Quality Care Centers
Quality Care Centers: How We Are Listening
By Bob Waterman
Chair Emeritus, WED Foundation Board of Directors
When Tom Peters and I were doing the research for, and writing, been certified. To receive certification, a center must follow
In Search of Excellence, we were struck by how badly some guidelines that ensure adherence to best practices for stroke
American companies were battered by Japanese and European diagnosis and care. ey must show that they can tailor treatment
competition. To oversimplify a bit, but not by much, American to individual needs, and they must show that they can be part of a
managements were not listening. Not listening to their customers. network that promotes the flow of information across settings and
Not listening to American quality gurus like W. Edwards Deming providers. is sounds exactly like the kind of action that industry
and Joseph M. Juran. e Japanese and many Europeans were has taken to promote total quality.
listening. We weren’t. As a result, especially in the auto and
consumer electronics industries, we produced a lot of junk. One of the questions our Foundation gets asked most frequently is
“Where do I go for good diagnosis and treatment of my suspected
When American companies, large and small, got their acts together case of WED/RLS?” It’s been a difficult one for us. We don’t want
with such programs as “total quality” and “six sigma,” their to be in the business of recommending individual doctors; we can’t
customers responded, market share went up, costs went down keep track of them all, and we don’t want to be in the business of
(less mistakes and rework), and profits improved. Of signal playing favorites.
importance, American companies stopped losing business to
foreign competition. But, we reasoned, we can parallel what the stroke community and
some others like it are doing for quality in their own disciplines.
Years ago I gave a speech to a big convention of doctors. My central With that in mind, we have launched what we call our “Quality
point was that doctors might not be listening to their patients. A Care Centers.” To be a WED/RLS Quality Care Center, a medical
huge opportunity, I opined, might be waiting for those doctors facility must be able to demonstrate:
who listened, then followed the same approaches to quality that
American industry had found useful. e first remark from the • Deep experience in treating cases of WED/RLS
audience was this: “e only thing you’ve said that I agree with is • Experience in managing WED/RLS patients with a wide range of
that you ‘don’t understand medicine.’” Fortunately (for me), other complexity and comorbidities using approved and off-label
members of the audience came to my defense. medications
• Experience in treating cases of augmentation caused by
But many must have agreed with that first statement. Just a few dopaminergic treatments
days ago the New York Times tells me that “physicians wait just 18 • Availability of equipment for measuring iron levels, particularly
seconds before interrupting patients’ narratives of their symptoms.” serum ferritin levels
And the researchers who produced that quote discovered that over • Ready access to other doctors in related fields such as psychiatry,
60 percent of patients misunderstand directions after a doctor’s neurology, pulmonology, hematology and sleep apnea
visit. Evidently there is room for improvement in the conversation
between patients and doctors. So far, we have designated five WED/RLS Quality Care Centers –
four domestic and one in Europe: Johns Hopkins, Mayo Clinic,
One glowing exception to this assertion seems to be our nation’s Stanford, the University of Texas Health Sciences Center at
network of stroke centers. Not long ago a close friend had Houston, and Innsbruck Medical University in Austria. We look
symptoms of what might have been a stroke. (It wasn’t, thank forward to many more.
goodness.) We rushed her to a nearby certified Primary Stroke
Center, where she was admitted to the hospital immediately and And as with the rest of our big goals on awareness, treatment and
asked a battery of questions to help sort out whether a stroke was finding that magic cure, we have miles to go before we sleep. One
imminent or in progress, then rushed past the usual admitting area in particular, one that started this article, and one where you
procedures so that the suspected stroke could be further diagnosed can help, is patient feedback. If our Quality Care Centers are to
and, if needed, immediately treated. mean anything, we need to know that they are working well. And
“working well” means listening to and serving your needs.
Such a streamlined process for listening had not always been the
case. In 2003, the American Stroke Association, concerned with the I regularly read reviews on, say, books at Amazon and movies at
quality and speed of stroke management, launched a program Rotten Tomatoes. In the same way, we need letters from you that rate
under which more than 1,000 stroke centers nationwide now have how well you are being served by your own doctors, whether or not
Continued on page 6

6 I NIGHTWALKERS www.willis-ekbom.org
Quality Care Centers
Continued from page 5

they are part of our Quality Care Center network. If they are part of How High is the Bar?
the network and doing well, or not so well, we need to know that. In addition to meeting high standards as a medical facility (see page
5), certified WED/RLS Quality Care Centers must also show that
Just as our nation has surged forward in the quality of medical staff members have a deep level of experience and expertise.
manufactured goods through the total quality movement, and Clinicians must:
as we have saved thousands of lives through an effective stroke
network, I’m hoping all our kids and grandkids will sleep better • Hold an MD or PhD (or PhD equivalent) degree
at night because the quality of our WED/RLS care has vastly • As a team, have seen a total of at least 200 unique WED/RLS
improved. at will happen when we can demonstrate that we patients, with each individual physician member having seen at
are listening to, and helping, you. least 50 unique WED/RLS patients
__________________________________________________ • Have a high level of experience managing WED/RLS patients
1
“Doctor, Shut Up and Listen,” Nirmal Joshi, New York Times, Jan. 4, 2015.
with a wide range of complexity and comorbidities
• Have board certification or its equivalent in sleep medicine, or in
Share Your Feedback neurology with a specialization in movement disorders
Have you visited a WED/RLS Quality Care Center? • Have completed at least 25 hours of continuing medical
Share your experience with us by sending an email to education in sleep medicine or movement disorders neurology
info@willis-ekbom.org. (with at least six hours dedicated to education in WED/RLS) in
the prior three years
Learn More
Visit www.willis-ekbom.org for complete information on
WED/RLS Quality Care Center certification requirements.

www.willis-ekbom.org NIGHTWALKERS I 7
Treatment
Medical Marijuana and WED/RLS
By Jacquelyn Bainbridge, PharmD, and Mark Buchfuhrer, MD, FRCP(C), FCCP, FAASM
e medical and recreational use of marijuana is increasing in the month supply of medical marijuana may last three to four months
U.S. e drug remains illegal under federal law (even though it is when used to treat bedtime WED/RLS symptoms.
legal in 23 states and the District of Columbia), but a federal
spending bill passed in December 2014 prohibits the Justice Marijuana is a structurally diverse chemical. Very little is known
Department from using federal funds to enforce this ban in states about the 489 constituents of the marijuana plant, Cannabis sativa.
with medical marijuana laws. It is known that 70 of these constituents are cannabinoids, and the
remainder are potentially unwanted neuroactive substances that cross
Medical marijuana is recognized as a legitimate medical application the blood-brain barrier. An important distinction regarding cannabis
for many disease states. Willis-Ekbom disease (also known as restless products is that tetrahydrocannabinol (THC) is the major
legs syndrome, or WED/RLS) is one disease for which patients are psychoactive ingredient (that is, it affects mental processes), and
looking to experiment with medical marijuana to relieve symptoms cannabidiol (CBD) is the major non-psychoactive component. It is
when more conventional treatments are unsuccessful, too expensive believed that products that are high in CBD and low in THC will
or cause unwanted side effects. produce wanted effects in the brain with little or no side effects on
mental processes.
Current treatment for WED/RLS
Current treatment for WED/RLS includes dopaminergic agents, an Some of the cannabinoids widely consumed are:
alpha-2-delta ligand subunit drug, and other medications that are not • Cannabinoid-rich preparations of cannabis in the herb (marijuana)
approved by the U.S. Food and Drug Administration (FDA) for or resin form
treating WED/RLS. e FDA-approved drugs demonstrate • Cannabinoid-containing pharmaceutical products containing
effectiveness by enhancing dopamine activity in the brain (Requip, natural cannabis extracts (Sativex, a GW Pharmaceuticals drug in
Mirapex, Neupro Patch) or by modifying calcium channels on nerves clinical trials in the U.S. and approved for use in Canada and
(Horizant), which changes the excitability of nerves that carry other countries)
WED/RLS sensations or pain. • Synthetic cannabinoid (dronabinol (Marinal)),
tetrahydrocannabinol (THC) or nabilone (Cesamet)
Medical marijuana in WED/RLS
ere are no current studies or clinical trials on the use of medical Studies on medical marijuana for treating pain and muscle spasticity
marijuana in WED/RLS. ough marijuana is not FDA approved have shown a significant reduction in symptoms compared to
for medical indications in the disease, anecdotal evidence from some placebo. In addition, these studies found no significant adverse
patients’ experiences with the drug have shown improvement in effects, and patient tolerability to marijuana was good. e most
some of the symptoms commonly associated with WED/RLS. common side effects of marijuana reported included dizziness,
fatigue, dry mouth and nausea.
Marijuana works mainly by acting on multiple cannabinoid receptors
in the brain to provide variable psychoactive effects (that is, affecting Many factors limit the use of medical marijuana in WED/RLS. First,
mental processes) on areas including motor activity, coordination and no clinical trials have documented its benefits for treating
pain relief by inhibiting prostaglandin biosynthesis and thus blocking WED/RLS. Second, studies of medical marijuana in pain and
pain receptor pathways. muscle spasticity involved small study populations over a short period
of time, and therefore do not provide information on how a patient
Although there are no studies examining the use of marijuana for would respond to long-term use. We also do not know the side
treating WED/RLS, there is some clinical experience available based effects or complications of using medical marijuana over the long
on its anecdotal use by many patients. Typically, ingested marijuana term. Finally, the use of marijuana is very limited in the U.S. as it is
(through brownies or cookies, for example) does not seem to benefit still considered illegal under federal law.
WED/RLS very much, while inhaled marijuana (through a
marijuana cigarette or vaporizer) works very quickly and effectively. In summary, in addition to federal acceptance of the legality of
Most WED/RLS sufferers report that after only a few puffs of a marijuana, more clinical trials are needed to validate whether the
marijuana cigarette or a few inhalations of vaporized medical use of medical marijuana would be beneficial in patients with
marijuana, even very severe symptoms are relieved within minutes. WED/RLS.
e relief does not last very long, wearing off after one or two hours.
erefore, inhaled marijuana works best for WED/RLS symptoms
that occur mainly at bedtime. Patients have reported that a one-

8 I NIGHTWALKERS www.willis-ekbom.org
Treatment
My Experience with Medical Marijuana
By Janice Hoffmann
Please note: e following essay is the opinion of the author only. stopping all medications cold turkey, then adding them back, one by
Publication in NightWalkers does not imply endorsement by the WED one, as needed. I looked at my husband, the blood drained from my
Foundation, its employees, its Board of Directors or its Medical Advisory face, and I nearly ran from the examining room.
Board. No studies have documented the benefits of medical marijuana for
But then, a friend suggested I try medical marijuana. I was skeptical.
treating WED/RLS, and its use remains illegal under federal law.
I did not have much hope for any relief. I was embarrassed. I was
erapies and results described reflect the experience of the author and
afraid. Although legal in California, medical marijuana is a federal
cannot be generalized to everyone with WED/RLS. It is important to talk
offense. Not only did that disturb me as a law-abiding citizen, but
to your healthcare provider before making any changes to your treatment
also my profession requires multiple federal licenses, which I assumed
regimen, and to take into consideration the legal status of marijuana in
were in jeopardy.
your jurisdiction.
I have been a card-carrying medical cannabis user since January
WED/RLS is often trivialized, ridiculed and the butt of jokes. A
2013. In addition to making my WED/RLS manageable, medical
genetic, neurological disorder, it ranks with the worst diseases in
marijuana has largely done away with my narcolepsy, insomnia,
terms of playing havoc on the lives of the afflicted and of their
attention deficit hyperactivity disorder (ADHD) and chronic pain.
spouses and loved ones.
I usually sleep through the night and awaken refreshed. I no longer
People who suffer from this disease describe symptoms in different take the seven drugs I had been taking, but control my symptoms
ways; for me, it’s as if a thousand wriggling, angry worms were with only two medications: Neupro Patch and TetraLabs GoldCaps
trapped in my thighs. If it sounds like it would make you crazy, you (a pharmaceutical-grade marijuana softgel that is available in
are correct. One of the horrid things about WED/RLS is that one various strengths).
begins to doubt one’s sanity. And, when you voice a description of
For me, all of the negatives of medical marijuana, known and
the symptoms, describing them akin to angry worms, it does sound
unknown, don’t compare to the negatives of taking the seven
as if you are one step away from hearing voices.
medications that I was on for years. I’m more alert and less drowsy
Nightwalker’s syndrome is a nickname for WED/RLS. Linked to with judicious use of medical marijuana than I was with the FDA-
circadian rhythms, the symptoms get much worse at night. Sleep stated side effects of the other drugs.
deprivation accrues to a debilitating extent, eventually impairing
Laws on medical marijuana use vary by state. In California, where I
cognitive skills and judgment. At one point, my WED/RLS specialist
live, you must obtain a recommendation from a physician and pick
told me he was amazed I had achieved all that I have. How did I ever
up the medication from special dispensaries. I recommend
have the attention span to finish my doctorate? How have I gotten
Americans for Safe Access (www.safeaccessnow.org) as a national
on plane after plane to go to over 60 countries? How have I pursued
resource for how to be legal with medical marijuana.
my passion for dance, theater and music? e answer is, with great
difficulty and determination. Medical marijuana gave me my life back. Before I started taking it, I
was in the top five worst cases I’d ever heard about. I was a crazed,
WED/RLS often has a comorbidity factor, partnering with sleep
sleep-deprived wreck. Now, I usually manage to get enough sleep to
apnea or another sleep disorder. Mine partnered with narcolepsy.
feel “normal” during the day. My blood pressure, weight and
is was discovered after I went to sleep one afternoon while driving
cholesterol are down. I get more exercise. Friends make comments
home on the freeway. Fortunately, no tragedy occurred. Until I got
like “you look fabulous,” “what have you done?” and “you were really
that part of the disorder under control, I had to hire someone to
bad.” I had no idea how bad I was, until I got better.
drive me around for a few months. If I had a nine-to-five job, I
would have had to declare disability long ago, but luckily I work in a Janice Hoffmann is senior vice president of investments with Morgan
profession that allows for flexible hours and freedom of movement. Stanley and a past chair of the WED Foundation Board of Directors. A
former music professor, she enjoys performing jazz and musical theater,
Like many WED/RLS sufferers, I found relief through a cocktail of
playing tennis, traveling, and spending time with her husband, Larry,
drugs. For many years, I took a combination of seven strong,
and her Maltese dog, Carina.
expensive drugs, each laden with side effects, and thus was able to
lead a semblance of a normal life.
Each January I would consult my physicians. Which of these drugs
could I stop taking? What were the long-term effects? Were there any
other choices? In 2013 when I asked my annual question, I was given
an option of going into a medical facility for a few weeks and

www.willis-ekbom.org NIGHTWALKERS I 9
Pharmacy Update
Disposing of Unused Medications: An Update
By Jacquelyn Bainbridge, PharmD; and Caitlin Butler, PharmD candidate

Medicines play an important role in our health. When they are no The final rule allows community pharmacies to conduct take-back
longer needed, however, it is important to discard them appropriately programs and gives people the option of mailing back their unused,
to avoid harm to others. Unused medications create a public health unwanted or expired prescription medications or placing them in a
and safety concern because they are highly susceptible to accidental pharmacy-maintained collection receptacle. Collection methods
ingestion, theft, abuse and misuse. Also, improper disposal has the include:
potential of adversely affecting the environment and human health.
1. Take-back events conducted by law enforcement or community
In the U.S., new collection methods have recently become available. pharmacies (please note: the DEA is not providing take-back
Keep reading to learn about different drug disposal options for programs at the time of this publication but may do so in the
expired, unwanted or unused medicines. future)
2. Mail-back programs administered by authorized manufacturers,
Don’t share. Follow instructions. Use take-back programs. distributors, reverse distributors, retail pharmacies, narcotic
First and foremost, do not give your medicine to others. treatment centers, law enforcement agencies, and hospitals and
Doctors prescribe medicines based on a person’s specific clinics with on-site pharmacies
symptoms and medical history. A medicine that works for you 3. Collection receptacles (permanent drop-off boxes) operated by any
could be dangerous for someone else. When in doubt about of these same entities. Authorized retail pharmacies and hospitals
proper disposal, talk to your pharmacist. or clinics with on-site pharmacies may also operate collection
receptacles at long-term care facilities
The U.S. Food and Drug Administration (FDA) advises to first
follow any specific disposal instructions on the drug label or patient To find authorized collectors in your community, call the DEA
information that accompanies the medication. Do not flush Office of Diversion Control’s Registration Call Center at
prescription drugs down the toilet unless this information specifically 1-800-882-9539. For more information about the final rule, visit
instructs you to do so. www.deadiversion.usdoj.gov/drug_disposal.

Another option is to take advantage of community drug More information


take-back programs that allow the public to bring unused drugs to Regardless of where you live, it is very important that you dispose
a central location for proper disposal. Call your city or county of your medications properly to avoid harm to others or to animals.
government’s household trash and recycling service to see if a For guidance, talk with your pharmacist, or visit
take-back program is available in your community. The U.S. Drug www.healthycanadians.gc.ca (Canada) or www.fda.gov (U.S.).
Enforcement Administration (DEA), working with state and local
law enforcement agencies, periodically sponsors a National
Prescription Drug Take-Back Day, when certain locations hold Is it okay to toss medications?
household hazardous waste collection events for prescription If you are unable to dispose of a medication through a collection
and over-the-counter drugs. venue, and you do not have special disposal instructions, then you
can safely dispose of most drugs in the household trash. Both the
New in 2014: Mail-back programs and collection receptacles FDA and the Government of Canada advise taking these steps for
The DEA released a final regulation on September 9, 2014, to safe disposal:
execute the Secure and Responsible Drug Disposal Act of 2010 in 1. Remove the medication from the original container and mix it
accordance with the Controlled Substance Act by expanding options with an undesirable substance, such as used coffee grounds or
to collect controlled substances from individuals for secure kitty litter. This makes the drug less appealing to children and
destruction. Previously, the Controlled Substances Act made no legal pets, and unrecognizable to people who may intentionally go
specifications for patients to dispose of unwanted drugs except to give through the trash seeking drugs.
them to law enforcement; this meant that pharmacies, doctors’ offices 2. Place the mixture in a sealable bag, empty can or other container
and hospitals were banned from accepting them. Most people ended to prevent the drug from leaking or breaking out of a garbage bag.
up flushing their unused drugs down the toilet, throwing them in the 3. Before throwing out a medicine container, scratch out all
trash or keeping them in the household medicine cabinet. identifying information on the prescription label to make it
unreadable. This will help protect your identity and the privacy of
your personal health information.

10 I NIGHTWALKERS www.willis-ekbom.org
Complementary Corner
Massage Therapy and WED/RLS
By Norma G. Cuellar, PhD, RN, FAAN

Massage therapy includes a variety of techniques that may help with WED/RLS (Russell, 2007). Some
symptoms of WED/RLS. According to the National Center of people may report that this type of
Complementary and Alternative Medicine, there is documentation massage is painful. Be sure and let
of massage in ancient writings from China, Japan, India and Egypt. the massage therapist know if the
The research on massage is inconsistent, and very few research massage is too deep and hurting
studies examine its benefits with WED/RLS. What is known is that, you. He or she will adjust to your
as with any medication or treatment, the treatment must be comfort.
consistent to get long-term benefits. Massage can be beneficial in
reducing anxiety and stress, which both may exacerbate the Finding the right massage
symptoms of WED/RLS. therapist for you
Professional organizations that can Norma G. Cuellar, PhD, RN, FAAN
Massage therapy has few risks involved and is usually performed by help you with the selection of a Professor, Capstone College of Nursing,
a trained therapist. In the United States, 44 states and the District of massage therapist include the University of Alabama
Columbia regulate massage therapists. However, standards of American Massage Therapy
training differ among states. Organization, the National Association of Massage Therapists, and
Associated Bodywork & Massage Professionals. It is important to
It is not uncommon to hear from persons with WED/RLS that self- find a massage therapist that is credible and reliable. The following
massage to the legs is helpful to relieve symptoms. While many questions may help you in your search.
patients report that massage therapy is helpful, there is little evidence
to support this. Massage may be effective in treating WED/RLS 1. Is the therapist certified in your state?
because of the natural release of dopamine following massage 2. Does the therapist carry professional malpractice insurance?
therapy (Field et al., 2005). In one study, urine dopamine levels 3. Does the therapist keep medical records or take Subjective,
increased by 28 percent after massage (Field, 1998). Another Objective, Assessment and Plan (SOAP) notes on your sessions?
possible benefit is counterstimulation to the cerebral cortex, which 4. Is the therapist certified in any other therapies in addition to
may help diminish WED/RLS symptoms while the patient is massage?
undergoing massage therapy. Other theories of massage therapists
include the possibility that the tactile stimulation during massage Massage therapy is a valid and reliable form of alternative or
may lessen neural activity in the brain and therefore symptoms. complementary treatment for WED/RLS. If you are currently using
Lastly, massage improves circulation, which may also relieve the massage therapy and it works for you, then you should continue to
symptoms of WED/RLS. use it. If you think you would like to try it, contact the professional
organizations listed above to learn more about massage and the best
Based on the experience of massage experts, it is thought that some way to choose a healthcare provider who is a massage therapist. And
of the uncomfortable sensations in the leg associated with last but not least, be sure to tell your regular healthcare provider that
WED/RLS may be the result of excessive tension of the piriformis you are choosing massage as an intervention for your WED/RLS.
muscle in the lateral rotator group, which consists of six small
muscles that all externally rotate the femur in the hip joint. References
Therefore, the massage therapist may focus the massage around the American Massage Therapy Organization, www.amtamassage.org.
piriformis muscle to help with WED/RLS symptoms. As in other Ruthann Johnson, “How To Find a Massage Therapist,” Associated Bodywork &
complementary and alternative medicine evidence, there is a lack of Massage Professionals, accessed January 15, 2015, http://www.massagether
research to support this in the literature. apy.com/articles/index.php/article_id/125/How-To-Find-a-Massage-Therapist-.
Field, T. 1998. “Massage therapy effects.” American Psychologist 52: 1270–81.
Deep tissue massage applies a deep pressure that is beneficial in Field, T., Hernandez-Reif, M., Diego, M., Schanberg, S., & Kuhn, C. 2005.
releasing chronic muscle tension, with focus on the deepest layers of “Cortisol decreases and serotonin and dopamine increase following massage
muscle tissue, tendons and fascia (the protective layer surrounding therapy.” International Journal of Neuroscience 115 (10): 1397–1413.
muscles, bones and joints). The movement is slow and the pressure Mitchell, U. 2011. “Nondrug-related aspect of treating Ekbom disease, formerly
deep, concentrating on areas of tension. This massage increases known as restless legs syndrome.” Neuropsychiatric Disease and Treatment 7: 251–7.
blood flow through the body and helps reduce inflammation. Deep
National Association of Massage Therapists, http://namtonline.com.
tissue massage to the hamstrings, quadriceps and lower extremities
has been shown to be beneficial to relieving the symptoms of Russell, M. 2007. “Massage therapy and restless legs syndrome.” Journal of
Bodywork and Movement Therapies 11: 146–50.

www.willis-ekbom.org NIGHTWALKERS I 11
In the News
By Lynn Marie Trotti, MD, MSc

Migraine and WED/RLS WED/RLS in Rural Ecuador


Midlife Migraine and Late-life Parkinsonism. Prevalence of Willis-Ekbom Disease in Rural Coastal Ecuador.
AI Scher et al. Neurology. September 2014. A Two-phase, Door-to-door, Population-based Survey.
OH Del Brutto et al. Journal of the Neurological Sciences.
Background: September 2014.
Migraine headaches are one of the most common neurological
disorders in adults. Prior studies have suggested that patients with Background:
migraines are more likely to have WED/RLS, and vice versa. A few past studies have tried to determine the prevalence of
WED/RLS in tropical regions. ese studies have generally suggested
Research: that WED/RLS is rare in these areas.
e researchers used data from a study that has been ongoing since
1967 called the AGES-Reykjavik Study. is study was initially Research:
started to evaluate heart disease in Iceland and has collected extensive The study authors sought to evaluate how commonly WED/RLS
information about participants at different points in time. Based on occurred in a rural, coastal region of Ecuador. Because prior studies
earlier studies showing a link connecting WED/RLS and other evaluating WED/RLS in tropical regions have been small or used
movement disorders with migraine, the researchers evaluated whether diagnostic methods that may not have been fully accurate, the
having migraine in middle age predicted either WED/RLS or authors performed a large study (665 people) with a two-step
Parkinson’s disease in later life. diagnostic evaluation for the disease. In the first step, all 665 people
were given a Spanish-translated version of the four IRLSSG
When participants were roughly middle-aged (at an average age of diagnostic questions for WED/RLS. In the second step, everyone
51, ranging from age 33 to 65), they were surveyed about headache who was considered to have suspected WED/RLS based on the
frequency and characteristics. Years later (at an average age of 77, questionnaire (94 people) and an additional 188 people who were
ranging from age 66 to 96), they were asked the four International not suspected to have WED/RLS based on the questionnaire (but
RLS Study Group (IRLSSG) questions about WED/RLS symptoms, were the same age and gender as the people suspected to have
as well as questions about Parkinson’s disease. In their overall group of WED/RLS) were evaluated by a neurologist or sleep specialist with
5,620 subjects, 23 percent answered yes to all four IRLSSG questions an interview and neurological exam to determine if they had the
and were considered to have WED/RLS. Subjects with migraine disease. Six percent of the 665 people were diagnosed with
headaches with aura and subjects with headaches other than WED/RLS using this approach. Using only the questionnaire (not
migraines were more likely to have WED/RLS than subjects without the detailed evaluation by the neurologist or sleep specialist) would
headaches. Subjects with migraine headaches with aura were also have resulted in misdiagnosing as WED/RLS a number of other
more likely to report having a diagnosis of Parkinson’s disease. conditions (such as knee arthritis).

Bottom Line: Bottom Line:


People with headaches have higher rates of WED/RLS than people WED/RLS occurs in six percent of people in rural Ecuador, which
without headaches. is more commonly than previously thought.

New Questions: New Questions:


e study authors speculated on how headaches and WED/RLS The IRLSSG questionnaire did not perform as well as an expert
could be related, including a problem with brain dopamine (which evaluation, but an expert evaluation is not always possible in large
appears to be involved in both disorders). However, the cause of the studies of hundreds of people; are there more accurate ways to
association between these two disorders remains to be determined. diagnose WED/RLS when expert evaluation is not possible?

12 I NIGHTWALKERS www.willis-ekbom.org
In the News
Impulse Control Disorders and Dopamine Agonist WED/RLS and Type of Dialysis in Patients with
Medications Kidney Failure
Reports of Pathological Gambling, Hypersexuality, and Compulsive Sleep Disorders in Patients with End-stage Renal Disease
Shopping Associated with Dopamine Receptor Agonist Drugs. Undergoing Dialysis: Comparison Between Hemodialysis,
TJ Moore et al. JAMA Internal Medicine. October 2014. Continuous Ambulatory Peritoneal Dialysis and Automated
Peritoneal Dialysis.
Background: RLM Losso et al. International Urology and Nephrology.
Relatively small studies have suggested that dopamine agonist October 2014.
medications may result in compulsive behaviors (for example,
gambling, inappropriate sexual behavior or excessive shopping) in Background:
patients treated for WED/RLS or Parkinson’s disease. WED/RLS is very common in patients who have kidney failure
and require dialysis. Several different types of dialysis are available,
Research: but it is not known if one is superior for patients with WED/RLS.
The U.S. Food and Drug Administration (FDA) takes reports
from patients and health professionals about suspected side Research:
effects from medications. Individuals can decide whether or not In this study, the authors sought to compare sleep symptoms in
to report a side effect to the FDA, and it is estimated that less patients receiving one of three different types of dialysis:
than 10 percent of side effects (perhaps as few as one percent) hemodialysis (performed three times per week in a clinic or
are reported. The authors of this study used the FDA database hospital setting), continuous ambulatory peritoneal dialysis
of all reported serious side effects over 10 years (from 2003 to (CAPD, performed several times throughout the day in the
2012) to identify all cases of impulse control adverse events. home setting) or automated peritoneal dialysis (APD,
These included a total of 1,580 events, of which the three most performed every night in the home setting). WED/RLS was
common impulse control disorders were pathologic gambling, assessed using the four IRLSSG questions, and patients were
hypersexuality and compulsive shopping. considered to have WED/RLS when they answered yes to all
four. WED/RLS was significantly more common in patients
In 45 percent of these reports, the patient was taking a dopamine doing nighttime APD, present in 50 percent of these patients
agonist medication for Parkinson’s disease or WED/RLS (or rarely, compared to 23 percent receiving hemodialysis and 33 percent
for other disorders). The increase in impulsive behaviors was seen receiving daytime CAPD.
for all dopamine agonists studied by the authors, but the effect was
most pronounced for pramipexole and ropinirole. Bottom Line:
WED/RLS occurs commonly in patients undergoing dialysis for
This study was limited by the fact that it relied on voluntary kidney failure, and the likelihood of having WED/RLS may vary
reporting of medication side effects, and there may be reasons why by type of dialysis.
side effects are reported more commonly with some medications
than others. For example, if doctors already suspect dopamine New Questions:
agonists cause gambling, they may be more likely to report Should a diagnosis of WED/RLS be part of the decision-
gambling when it occurs in a patient taking a dopamine agonist. making for which type of dialysis is to be performed in patients
The authors concluded that patients, families and caregivers should with kidney failure? If a patient develops severe WED/RLS
be warned about the possibility of impulse control problems in while undergoing peritoneal dialysis, does changing to a
patients taking dopamine agonists. different kind of dialysis (hemodialysis) help?

Bottom Line:
Impulse control problems are more likely to be reported with using
dopamine agonist medications than with other medications, in
patients treated for Parkinson’s disease or WED/RLS.

New Questions:
Are some dopamine agonist medications less likely than others
to trigger impulse control problems in patients with
WED/RLS? If a WED/RLS patient develops an impulse control
problem on one dopamine agonist, what are the risks of trying a
different dopamine agonist?

www.willis-ekbom.org NIGHTWALKERS I 13
Living with WED/RLS
What We Can Learn from Books on Death and Dying
By Grant P. Thompson

Having come of age in the 1950s, I can vividly recall the time Another New Yorker author, Atul Gawande, a physician and
when my mother and her friends would cover their mouths and Harvard Medical School professor, has written a wise,
say in a low whisper, “She has ‘C’, you know!” Like Victorian compassionate book on the end of life: Being Mortal: Medicine
women talking about venereal disease, even to say out loud that and What Matters in the End. The son of two physicians,
a friend had cancer was to inflict shame on the person and their Gawande tells the story of how his father had carefully planned
family. I was never sure why a disease that appeared to strike for his own care at the end of life, providing family and doctors
people of all stations of life, wealthy and wicked alike, should be with explicit written instructions. Yet his wife, Gawande’s
so shameful, but I learned that cancer was not to be talked mother, panicked, nearly hijacking his father’s wishes until the
about in polite company. What a relief it is now to be open and family persuaded her to agree to stop treatment. The message of
honest, allowing us to share information, comfort and support this book is aimed at doctors as much as patients. “Ask your
on what is, after all, simply one of many misfortunes that afflict patient what is important to them in life and when that is no
human lives. longer within their ability to achieve, don’t fight a war simply to
win time in misery.” Gawande’s counsel, it seems to me, is
I’ve been remembering those days as I notice the flood of books something that those of us whose lives are diminished in some
on death and dying. One can hardly open a book review, way by hardship should ask ourselves: What do we want out of
browse on amazon.com, or visit a bookstore without finding a our lives? Can we accomplish it in spite of the obstacles set in
large section of books advising us on how to think about death, front of us? Can we be as happy shifting our desires, seeing that
how to stave it off a few years, how to grieve, and how to giving up one set of goals frees us to flourish in ways we had
prepare for it. I found myself reading these books following my not expected?
only brother’s death from Parkinson’s disease. But I have been
surprised that much of what I read to help me deal with my Other books vie for a place on our reading list. Bronnie Ware’s
grief had a great deal to tell me about how I should be living my The Top Five Regrets of the Dying reminds us of how to live our
life now. lives now, so we won’t have to share the regrets of wishing we
hadn’t worked so hard, had let ourselves be happier, had stayed
These books on death urge us to consider planning, in touch with our friends, had had the courage to express our
demystifying and otherwise bringing out from the darkness the feelings and the wisdom to live our lives true to ourselves and
issues surrounding the end of life. Yet aren’t these issues nearly not to the expectations of others. Based on her years working in
the same as those faced by individuals living with a condition palliative care, Ware provides useful guides for action we can
that can be debilitating and painful, yet not easy for outsiders to take now, even as we face pain, exhaustion and discouragement.
see or understand? Willis-Ekbom disease (restless legs syndrome,
or WED/RLS) as I hardly need say to readers of NightWalkers, These are only three of many books on the subject. I urge those
can leave one tired, cranky and occasionally unpleasant to be of us who live in pain or discomfort to pick up one or more of
around. (Full disclosure: Although I don’t suffer from these books, reading them not only as a primer on the end of
WED/RLS, I have lived with chronic pelvic pain, often at a life, but in addition looking for tips on how to lead our own
debilitating intensity, since 1995.) Reading about dying and the lives now as fully and filled with joy as we permit them to be.
days and months near the end of life has opened up my mind to
ways in which openness, preparation and sharing with others
can help make our lives easier and gain us allies in what
otherwise can be a lonely journey.

I’ll start by recommending a deeply funny, painfully honest


account by New Yorker cartoonist Roz Chast of the final years of
her parents’ lives. In Can’t We Talk About Something More
Pleasant?, Chast tells in cartoon form about the pressures and
even humor of taking care of her complaining, obstinate, daffy
mother and father. Deeply loving and honest – painfully so at
times – Chast reminds us of how those of us suffering can make
things harder or easier for ourselves and those we love.

14 I NIGHTWALKERS www.willis-ekbom.org
Pain and Willis-Ekbom Disease/Restless Legs
Syndrome
A Guide to Help You Control and Manage Your WED/RLS

The following was written by William G. Ondo, MD, a professor of Scientific studies have shown some similarities between WED/RLS
neurology at The University of Health Science Center at Houston, and and pain. It should be noted that neither condition is entirely
director of the WED/RLS Quality Care Center in Houston. Dr. Ondo understood. Tests of pinprick to the feet pain ratings (static
has authored more than 200 original articles, review articles, and book hyperalgesia) in WED/RLS patients were significantly elevated in
chapters, and has edited two textbooks on movement disorders. His the lower limb, whereas sensation to light touch (allodynia) were
current research interests include Parkinson’s disease, Willis-Ekbom normal.4 In patients with chronic pain, both were abnormal. In the
disease/restless legs syndrome, tremor, and the use of botulinum toxins. subset of subjects whose WED/RLS was successfully treated with
dopaminergics (which do not treat pain), the pinprick hyperalgesia
Pain is broadly defined as any unpleasant sensation with a negative
testing normalized. There is little data to suggest dopaminergics
affective component. The symptoms of Willis-Ekbom disease
treat pain in general. However, descending dopaminergic tracts in
(restless legs syndrome, or WED/RLS) meet the criteria. However,
the spinal cord are suggested to be involved in WED/RLS5 and
the majority of patients specifically state that the sensation is not
may also be involved with suppression of pain in general.6
“painful,” though certainly unpleasant. Traditional pain symptoms
probably occur in about 20 percent of WED/RLS patients, although In general, large treatment studies of WED/RLS with
80 percent may report some pain.1,2 This mostly depends on dopaminergics have not formally assessed pain. In my experience,
semantics and how pain is defined. The commonly used McGill Pain dopaminergic medications dramatically improve the urge to move
Questionnaire correlates with questionnaires about WED/RLS in in WED/RLS, but do not consistently improve pain. Gabapentin
general, but the adjectives most commonly endorsed in the McGill enacarbil (Horizant) is a novel drug that is absorbed more
Pain Questionnaire (annoying, nagging, tingling, etc.) are not very effectively than its predecessor gabapentin (Neurontin). It works
specific for pain.3 Furthermore, visual analogue pain scales – where differently than dopaminergics and is approved by the U.S. Food
people draw a line on a scale between zero and 10 – do not correlate and Drug Administration (FDA) for WED/RLS. In trials, visual
with WED/RLS scales in studies. analogue pain scales specifically improve, and as opposed to
dopaminergics, this drug probably helps chronic pain in general.
When is WED/RLS painful?
There are several different scenarios where patients may have Another similar drug, pregabalin (Lyrica), probably has a similar
traditional pain with WED/RLS. First, pain may be seen specifically effect. Opioids (narcotics) are also used to treat both WED/RLS
as part of the urge-to-move sensory component. This is part of the and pain. There are no formal trials to evaluate these drugs in
primary WED/RLS description. Second, patients may have pain and painful WED/RLS, but they probably help. Improved sleep may
an urge to move that are two separate features. This occurs most also help pain.
commonly with concurrent neuropathy, which is any damage or
impairment of the nerves in the legs or feet. Patients with neuropathy In my experience, people usually will not distinguish
are probably at increased risk for WED/RLS, but they may also have
a burning, superficial pain in their feet (neuropathic pain). In my between these two symptoms – pain in the feet versus
experience, people usually will not distinguish between these two the urge to move the legs – unless very carefully
symptoms – pain in the feet versus the urge to move the legs – questioned.
unless very carefully questioned.
A third cause of pain may be the consequences of learned helplessness Summary
(knowing you are going to get the unpleasant symptoms and In my opinion, pain specialists often incorrectly treat
anticipating them) and sleep deprivation, which lowers pain threshold. WED/RLS. In most cases, there are major differences between
WED/RLS management and pain management, and some
Finally, painful symptoms may be caused by chronic long-term medications used to facilitate pain management can actually
treatment with dopaminergics (that is, Mirapex or Requip), because a worsen WED/RLS. Local numbing injections and steroid
change in the quality of the symptoms to a more painful sensation shots are also ineffective for true WED/RLS. That said, if
may be part of augmentation. This last cause is controversial because a therapy is effective and felt to be safe for any individual
it is unknown whether WED/RLS may gradually evolve into pain patient, there is no reason to change.
even without dopaminergic treatment, or if pain is more noticed
because the dopaminergics effectively treat the urge to move.
Understanding pain with WED/RLS

www.willis-ekbom.org NIGHTWALKERS I 15
William G. Ondo, MD
Professor of Neurology
The University of Texas Health Science Center at Houston

Director, WED/RLS Quality Care Center


6410 Fannin Ste 1014
Houston, TX 77030
832-325-7080

References
1
Ondo W, Jankovic J. 1996. “Restless legs syndrome: clinicoetiologic correlates.”
Neurology 47 (6): 1435–41.

2
Winkelmann J, Wetter TC, Collado-Seidel V, et al. 2000. “Clinical characteristics
and frequency of the hereditary restless legs syndrome in a population of 300
patients.” Sleep 23 (5): 597–602.

3
Bentley AJ, Rosman KD, Mitchell D. 2007. “Can the sensory symptoms of
restless legs syndrome be assessed using a qualitative pain questionnaire?” Clin J
Pain 23 (1): 62–66.

4
Stiasny-Kolster K, Magerl W, Oertel WH, Moller JC, Treede RD. 2004. “Static
mechanical hyperalgesia without dynamic tactile allodynia in patients with restless
legs syndrome.” Brain 127 (Pt 4): 773–82.

5
Qu S, Le W, Zhang X, Xie W, Zhang A, Ondo WG. 2007. “Locomotion is
increased in a11-lesioned mice with iron deprivation: a possible animal model for
restless legs syndrome.” J Neuropathol Exp Neurol 66 (5): 383–88.

6
Fleetwood-Walker SM, Hope PJ, Mitchell R. 1988. “Antinociceptive actions of
descending dopaminergic tracts on cat and rat dorsal horn somatosensory
neurones.” J Physiol 399: 335–48.

The Willis-Ekbom Disease Foundation, formerly the RLS Foundation,


is dedicated to improving the lives of the men, women and children
who live with this often devastating disease. Our mission is to increase
awareness, improve treatments and through research, find a cure for
Willis-Ekbom disease.
© 2015 Willis-Ekbom Disease Foundation. All rights reserved.

info@willis-ekbom.org | www.willis-ekbom.org | facebook.com/WillisEkbomDiseaseFoundation | twitter@WEDFoundation

16 I NIGHTWALKERS www.willis-ekbom.org
Living with WED/RLS
Become a Support Group Leader
Want to attend a support group meeting, but can’t find a How do I get started?
support group in your area? Interested in starting a support To get started, contact the Foundation to complete an application
group, but not sure how? and provide personal references. Before approving your application,
we will send a short questionnaire to these references and contact
We have an opportunity for you! rough the WED you to set up a phone interview.
Foundation, you can volunteer to establish and lead a support
group for people in your community. To learn more or request an application, please call the Foundation
at 512-366-9109 or contact Mary at mhopkins@willis-ekbom.org.
e role of a support group leader is to support the
Foundation’s goals to increase awareness, improve treatments
and, through research, find a cure for WED/RLS. Support
group leaders develop meetings and facilitate discussions to
share experiences among people who have WED/RLS, are
affected by WED/RLS, or otherwise have an interest in the
disease. Support group leaders work with the Foundation to
provide information about treatment, coping strategies, and
ways to communicate with healthcare providers.

If you want to help people but not lead a support group,


consider volunteering as a “contact” for the Foundation.
Contacts have a similar role as support group leaders in that
they provide support, increase awareness of WED/RLS in their
communities and serve as resources for information. e
difference is that contacts are not required to hold meetings, but
help others one-to-one, whether in person, by phone or by
email.

When you volunteer as a support group leader or contact, the


WED Foundation will provide you with:

• An introductory training session


• A designated WED Foundation email address that will
forward messages to your personal email account
• Complimentary WED Foundation membership as long as you
remain active as a leader
• Assistance and support from Foundation staff when you have
questions, concerns or comments
• Publicity for support group meetings through the WED
Foundation website and email blasts, and an annual mailing in
your geographic area
• Materials to use during WED/RLS Awareness Day every
September
• A support group manual covering topics like how to get
started and hold your first meeting, how to find a medical
advisor, and how to order literature from the Foundation
• Limited reimbursement of expenses such as postage, room
rental, supplies and speaker fees (please inquire before
incurring expenses, as funding is limited)

www.willis-ekbom.org NIGHTWALKERS I 17
WED/RLS Support Group Network
Across the United States and Canada, support groups bring people together to share their feelings about living with WED/RLS, discuss
ways to communicate with their families, friends and healthcare providers, and learn about the latest treatments. The WED Foundation
also maintains a network of contacts. Contacts are individuals who have volunteered to offer support by phone or email to people in
their area who are looking for WED/RLS information, resources and support. They do not hold meetings, but they can assist you in
finding help where you live.
The most up-to-date support group information is available on www.willis-ekbom.org. If you are unable to reach a contact or support
group leader in your area, please contact the WED Foundation at info@willis-ekbom.org.

United States
ARIZONA Susan Schlichting Ed Murfin - Contact IOWA MASSACHUSETTS
Jane Anderson Redondo Beach, CA Jacksonville, FL Thelma Bradt - Contact Sheila Connolly - Contact
Tucson, AZ 310-792-2952 904-573-8686 West Des Moines, IA Hyannis, MA
Tucson@rlsgroups.org Susan@rlsgroups.org jacksonville@rlsgroups.org 515-978-2907 508-790-7640
Thelma@rlsgroups.org sheila@rlsgroups.org
Charlene Travelstead William Schramm Louis Siegel - Contact
Lake Havasu City, AZ Salinas, CA Lakewood Ranch, FL Delila Roberts - Contact MISSOURI
928-453-9019 831-484-9058 941-536-0475 Huxley, IA Roseanna Leach
LakeHavasu@rlsgroups.org MontereyBay@rlsgroups.org louis@rlsgroups.org 515-597-2782 Oronogo, MO
CentralIowa@rlsgroups.org 417-434-5331
ARKANSAS Kristen Weeks-Norton Margaret Walters Southwestmo@rlsgroups.org
John Graves - Contact Davis, CA Sarasota, FL Elaine Tucker - Contact
Little Rock, AR Kristen@rlsgroups.org 941-921-4200 Story City, IA Kathy Page
501-565-0341 gulfcoast@rlsgroups.org 515-733-2299 Smithton, MO
john@rlsgroups.org Daria Wheeler CentralIowa1@rlsgroups.org 660-368-2382
Santa Cruz, CA Richard Wilson CentralMissouri@rlsgroups.org
Carol Mallard - Contact 831-465-0586 Tallahassee, FL KANSAS
Midway, AR daria@rlsgroups.org 850-443-5414 John LaFever NEBRASKA
870-481-5640 tallahassee@rlsgroups.org Wichita, KS Linda Sieh - Contact
carol@rlsgroups.org COLORADO 316-773-5195 Naper, NE
Rhondda Grant GEORGIA CentralKansas@rlsgroups.org 402-832-5177
CALIFORNIA Denver, CO Lorne Ebel Omaha@rlsgroups.org
Sanjana Black 720-319-1458 Newnan, GA Nora Walter - Contact
Fremont, CA rhondda@rlsgroups.org 770-480-9663 Lenexa, KS NEVADA
510-744-6726 newnan@rlsgroups.org 913-268-8879 Flora Woratschek
bayarea@rlsgroups.org Kay Hall KansasCity@rlsgroups.org Henderson, NV
Highlands Ranch, CO IDAHO 702-450-5188
Wesley Doak 303-741-6190 Linda Secretan* KENTUCKY flora@rlsgroups.org
Sacramento, CA Denver1@rlsgroups.org Eagle, ID Ken McKenney
916-612-3232 661-341-0530 Bowling Green, KY NEW HAMPSHIRE
Sacramento@rlsgroups.org Llyn Lankford linda@rlsgroups.org 270-996-7610 Roberta Kittredge
Boulder, CO SoKentucky@rlsgroups.org Hampton, NH
Carol Galloway - Contact 720-562-8148 ILLINOIS 603-926-9328
San Rafael, CA Llyn@rlsgroups.org Gail Sesock - Contact John White - Contact Seacoast@rlsgroups.org
415-459-1609 Herrin, IL Lebanon Junction, KY
marincounty@rlsgroups.org DELAWARE 618-942-7143 502-640-8871 Gail Richens - Contact
Betsy Lacinski - Contact Gail@rlsgroups.org LebanonJunction@rlsgroups.org Hanover, NH
Caroline Chamales Newark, DE 603-643-2624
San Diego, CA 302-292-2687 INDIANA MAINE UpperValley@rlsgroups.org
917-526-1339 Betsy@rlsgroups.org Linda Klug Sally Breen - Contact
caroline@rlsgroups.org Bloomington, IN Windham, ME NEW JERSEY
FLORIDA 812-824-6161 207-892-8391 Elda Costigan
Charmaigne Menn Rae Lapides southernindiana@rlsgroups.org SoMaine@rlsgroups.org Edison, NJ
Rancho Mirage, CA Gainesville, FL 732-310-6895
760-408-2123 352-240-6217 Diane Weissenberger Régis Langelier elda@rlsgroups.org
CoachellaValley@rlsgroups.org rae@rlsgroups.org Indianapolis, IN Ocean Park, ME
317-842-0764 207-351-5352 Dot Quill
Lola Scavo - Contact Mary Lou Mennona Indianapolis@rlsgroups.org seacoastmaine@rlsgroups.org Cape May Court House, NJ
Fullerton, CA Hobe Sound, FL 609-465-2879
714-256-5722 772-546-0750 SoJersey@rlsgroups.org
Morningside@rlsgroups.org treasurecoast@rlsgroups.org

* Member of WED Foundation Board of Directors

18 I NIGHTWALKERS www.willis-ekbom.org
WED/RLS Support Group Network
NEW YORK Ethel Rebar - Contact Pamela Hamilton-Stubbs Roger Backes Randy Thompson
Michael Haltman - Contact Madison Township, PA Henrico, VA Fitchburg, WI Barrie, ON
Woodbury, NY 570-842-3443 804-273-9900 608-276-4002 705-503-3647
516-338-7500 MoscowHopefuls@rlsgroups.org CentralVirginia@rlsgroups.org Madison@rlsgroups.org wedbarrie@rlsgroups.org
newyorkmetro@rlsgroups.org
Dennis Moore Annette Price - Contact Canada Cyberspace
OHIO York, PA Newport, VA Carol Abboud Online Discussion Board
Jan Schneider 717-881-4552 540-544-7454 Connolly - Contact Moderators
Beavercreek, OH dennis@rlsgroups.org SWVirginia@rlsgroups.org Masham, QC
937-429-0620 819-459-2655 Ann Battenfield
SWOhio@rlsgroups.org RHODE ISLAND Carol Seely - Contact ottawa@rlsgroups.org rlsfmods@aim.com
Brenda Castiglioni Haymarket, VA
OREGON West Greenwich, RI 703-754-2189 Karen Conway Tracy Carolan
Valerie Boggs - Contact 401-385-3029 seely@rlsgroups.org Chilliwack, BC rlsfmods@aim.com
Roseburg, OR brenda@rlsgroups.org 604-792-8729
541-817-4511 WASHINGTON lowermainland@rlsgroups.org Beth Fischer
Umpqua2@rlsgroups.org SOUTH CAROLINA Teresa Kincaid rlsfmods@aim.com
Ida Brassard Spokane, WA Beth Fischer
M. Lynn McCracken - Contact Myrtle Beach, SC 509-999-8234 Yellowknife, NT Betty Rankin
Roseburg, OR 843-234-3140 Spokane@rlsgroups.org 867-765-8062 rlsfmods@aim.com
541-672-3078 ida@rlsgroups.org beth@rlsgroups.org
Umpqua@rlsgroups.org Allyn K. Ruff - Contact Stephen Smith
TEXAS Puyallup, WA Armand Gilks rlsfmods@aim.com
Yvaughn Tompkins Donnie Kee 253-222-5232 Toronto, ON
Eugene, OR Lufkin, TX Tacoma1@rlsgroups.org 416-561-2710
541-682-6315 936-635-4416 Toronto@rlsgroups.org
Lanecounty@rlsgroups.org Donnie@rlsgroups.org Charlotte Spada
Anacortes, WA Gwen Howlett - Contact
PENNSYLVANIA UTAH 360-293-7328 Brantford, ON
Karen Walborn Spencer and Morgan SkagitCounty@rlsgroups.org 519-753-1028
Carlisle, PA Christensen - Contacts gwen@rlsgroups.org
717-486-3788 Provo, UT Roger Winters - Contact
karen@rlsgroups.org 916-218-9591 Seattle, WA Heather McMichael
spencer@rlsgroups.org 206-755-2526 London, ON
Alice Maxin - Contact morgan@rlsgroups.org roger@rlsgroups.org 519-671-9376
Leechburg, PA LondonOntario@rlsgroups.org
724-295-4117 VIRGINIA WISCONSIN
PittsburghNorth@rlsgroups.org Patricia Arthur - Contact James Alf - Contact Pamela Oake
Lynchburg, VA Eau Claire, WI St. John’s, NL
Kim Jedlowski - Contact 434-386-3804 715-514-1840 709-351-4343
Lower Burrell, PA Lynchburg@rlsgroups.org EauClaire@rlsgroups.org pamela@rlsgroups.org
724-335-0501
kim@rlsgroups.og

International DENMARK ITALY SPAIN


The following independent groups Restless Legs Portalen ferrinistrambi.luigi@hsr.it Aespi, Asociacion Espanola de sin-
work in cooperation with the WED Restless Legs -Patientforeningen drome de piernas inquietas Madrid
JAPAN
Foundation. www.aespi.net
FINLAND Osaka Sleep Health Network
Levottomat jalat RLSry (Finland) www.oshnet-jp.org SWEDEN
AUSTRALIA www.uniliitto.fi WED-Förbundet
Restless Legs Syndrome Australia THE NETHERLANDS
www.rlsforbundet.se
www.rls.org.au FRANCE Stichting Restless Legs Nederland
A.F.S.J.R, Association Française des www.stichting-restlesss-legs.org SWITZERLAND
AUSTRIA Personnes Affectées par le Syndrome Restless Legs Schweiz
Dachverband der österreichischen NEW ZEALAND
de Jambes sans Repos www.restless-legs.ch
Selbsthilfegruppen Brain Research
www.afsjr.fr
www.restless-legs.at www.neurological.org.nz UNITED KINGDOM
GERMANY Restless Legs Syndrome UK
BELGIUM NORWAY
Deutsche Restless Legs Vereinigung www.rlsuk-esa.org.uk
Association Belge du Syndrome Foreningen rastlöse bein
www.restless-legs.org
des Jambes sans Repos (Absjr) www.rastlos.org
www.absjr.be

www.willis-ekbom.org NIGHTWALKERS I 19
Ask the Doctor
The WED Foundation is unable to respond to individual medical augmentation.) With the help of an experienced WED/RLS
or treatment-based questions due to liability issues. Your personal physician, you should have a very good chance of relieving your
healthcare provider knows you best, so please contact him/her with WED/RLS symptoms.
specific questions related to the ongoing management of your WED/RLS. Mark J. Buchfuhrer, MD
Q: I have basic tremor, as the doctors call the cause of my poor
We welcome your general-interest medical questions. Select coordination, now worsening as I age. Is this related to my
questions on areas of common interest will be published in a future WED/RLS, and where can I find more information?
issue of NightWalkers. The Foundation will edit questions as
needed and keep them anonymous in the newsletter. A: It is not uncommon to have exacerbation of WED/RLS in such
situations. You can try other medications such as pregabalin or
Q: I have just returned home following a massive debulking gabapentin. Some of the recent reports have shown very good
operation for peritoneal/ovarian cancer. At the time of my results with pregabalin. It may also help pain in addition to the
diagnosis with cancer, my ferritin was 153 micrograms /L. feeling of restlessness.
When I first determined that I had WED/RLS, my ferritin Abdul Qayyum Rana, MD, FRCPC
was eight and had never gone higher than 50. My doctor does A: It is most likely that your tremor is not related to your
not agree that it should be higher. I am told that ferritin can WED/RLS and that it is just a coincidence that you have two
rise if related to inflammation from cancer. fairly common medical conditions. There are no studies on this
I had my WED/RLS under control with two 5/325 milligram topic, so there are no further sources of information.
tablets of hydrocodone, but now that is not working. My Mark J Buchfuhrer, MD
WED/RLS is significantly worse to the point of being Q: I wonder if there is any correlation between attention deficit
unbearable. It also starts earlier in the afternoon and prevents hyperactivity disorder (ADHD) and WED/RLS. Have any
me from resting if I lie down. I do not want to go on WED/RLS patients gotten better after taking Ritalin?
dopamine agonists because my mother suffered greatly from
augmentation and other side effects. I am holding off A: There have been several reports of association of ADHD and
sleeping during the day with the hope that my sleep-wake WED/RLS in various forms. Some reports have suggested that
cycle will regulate again. I am also not treating the pain parents of children with ADHD may have increased prevalence of
during the day so that I can increase my dose during the WED/RLS. There is currently no consensus about the use of
night. Do you have any recommendations for how to deal Ritalin in WED/RLS.
with the markedly increased WED/RLS? Abdul Qayyum Rana, MD, FRCPC
A: In the setting of inflammation, the serum ferritin level can indeed A: For both children and adults, ADD/ADHD is more commonly
rise, and therefore an apparently normal serum ferritin level may found with WED/RLS than in the general population. It is not
not be an accurate marker of iron stores in the body. In this clearly understood why these occur together frequently. Yes,
setting it is important to also measure the serum iron WED/RLS symptoms are typically better with stimulant
concentration and the percentage saturation, as these measures medication such as methylphenidate (Ritalin). While this may help
are more likely to indicate iron deficiency if it is present. If iron during the day or early evening, stimulant medication is ill suited for
stores are low after surgery in someone whose WED/RLS beneficial effect in the late evening or overnight, due to the alerting
symptoms have dramatically worsened and become intolerable, effect impacting sleep. Of course, while stimulant medications are
some physicians would consider an intravenous iron infusion to approved for ADD/ADHD and narcolepsy, they are controlled
rapidly correct iron deficiency. substances and can be prescribed for someone with WED/RLS only
Michael H. Silber, MB, ChB if one of those other conditions coexists.
Daniel Picchietti, MD
A: It is not uncommon to have exacerbation of WED/RLS in such
situations. You can try other medications such as gabapentin Q: Is it possible that WED/RLS patients with normal ferritin
enacarbil (Horizant), pregabalin (Lyrica) or gabapentin. levels would benefit from iron supplements?
Some of the recent reports have shown very good results with A: Blood ferritin levels are one of the more sensitive tests for
pregabalin. It may also help pain in addition to the feeling of evaluating iron stores in the body, but they may not always reflect
restlessness. how much iron is in the brain. Although normal ferritin levels are
Abdul Qayyum Rana, MD, FRCPC defined by most laboratories as above 10 or 20 micrograms/L,
A: Your case is fairly complex, as your WED/RLS is worsening and studies have demonstrated that WED/RLS patients may benefit
complicated by your problems with cancer. You may require from increasing their ferritin levels over 50–75 micrograms/L by
combination therapy, which may include an opioid, anti-seizure taking oral iron. There appears to be an even greater benefit from
drug (Horizant, Lyrica or gabapentin) and even a dopamine continued on page 21
agonist. (You might consider Neupro, which is a long-acting
dopamine agonist that has less of a tendency to cause

20 I NIGHTWALKERS www.willis-ekbom.org
Ask the Doctor
Continued from page 20

intravenous iron therapy, but not everyone responds to this Q: I’ve had WED/RLS most of my life. It has become much
therapy. It is still not clear as to what ferritin levels may respond more severe in the past six months. I don’t take any
to intravenous iron therapy. Some patients with quite reasonable medications on a regular basis but have been able to control it
ferritin levels (over 100 micrograms/L) have demonstrated a at night with a variety of sleep aids (Ambien, Advil PM,
response to intravenous iron therapy in anecdotal cases (in my Benadryl, Xanax). I’ve only taken them on an as-needed
experience). basis, and usually just a few nights per week. That was until
Mark J Buchfuhrer, MD recently. The Advil PM and Benadryl seem to make my
Q: I have sleep apnea. I have noticed during the day when I’m WED/RLS worse. And now, I feel the need to move my arms,
tired that my restless leg kicks in. Is there a connection? Also, legs and shoulders. It happens any time of the day if I am
when WED/RLS happens to me, if I start walking around, it sitting or trying to relax.
subsides faster than when I’m sitting down. Last night I had a particularly scary sensation. I was trying to
A: Yes, it has been noted by many patients, and corroborated by sleep without any drugs. However, it felt like my entire
research, that WED/RLS symptoms tend to worsen when one is insides were vibrating. I finally got up and took 5 mg of
tired. Ambien. It took a long time to have an effect. My doctor
Birgit Högl, MD prescribed Requip, but I am reluctant to take it because of all
the listed side effects.
A: It is typical for WED/RLS symptoms to act up when there is
physical and mental inactivity. Conversely, symptoms subside A: Advil PM and Benadryl both contain diphenhydramine, which is
when there is physical activity or mental stimulation. The more known to worsen WED/RLS unless it puts you to sleep before you
intense the stimulation (e.g., walking, running or engaging in can experience the increase in symptoms. Requip is a reasonable
vigorous discussion), the better the effect. Of course, this is why drug but may cause augmentation when used long term. Another
WED/RLS symptoms are problematic when a person does quiet, choice of treatment (which is a different class of drug) to discuss
relaxing activities or tries to fall asleep. Of note, it is very with your doctor is Horizant. I have heard a few patients complain
important to treat sleep apnea effectively when there is of a similar whole-body vibration sensation when their WED/RLS
WED/RLS. Untreated sleep apnea has an aggravating effect on symptoms are very severe and have spread to several body parts.
WED/RLS symptoms. Mark J. Buchfuhrer, MD
Daniel Picchietti, MD

Bedtime Stories
Bedtime Stories are the opinions of the authors only and not of the WED My exercise program:
Foundation, its employees or its Board of Directors. Publication in
NightWalkers does not imply endorsement by the WED Foundation. Swimming: 1 mile, 3x/week
Therapies and results described in Bedtime Stories reflect the experiences of Pilates: 3x/week
individuals and cannot be generalized to everyone with WED/RLS. It is Walking: 2–3 miles, 3–4x/week
important to talk to your healthcare provider and investigate concerns such Stretching: 2–3x/week
as safety, efficacy and cost before making any changes to your treatment
regimen. Stories may be altered for length or clarity. Hope this helps!
– W.
To submit your story for publication, please send an email to
info@willis-ekbom.org. Thank you,“W.” for sharing your story in
this issue!

www.willis-ekbom.org NIGHTWALKERS I 21
Clinical Trials
A clinical trial is a research study that uses volunteers to investigate NeuroTrials Research in Atlanta, Georgia, is conducting a local
specific health questions. The WED Foundation does not conduct study to examine the safety and efficacy of a new investigational
clinical trials; however, as a service to our members we list clinical trial drug for Willis-Ekbom disease (restless legs syndrome). Study-
opportunities on our website and in NightWalkers. Below is a partial related care and study drug are provided at no cost. Qualified
list of WED/RLS clinical trials currently seeking volunteers. Please participants will be compensated for time and travel. To qualify,
contact the institution directly if you are interested in participating. All participants must be 18 to 70 years of age, have a diagnosis of
studies listed have received Institutional Review Board (IRB) approval, WED/RLS for over six months, experience symptoms of
which allows us to ensure that they follow established protocols. Please WED/RLS for at least 15 nights per month, and otherwise be in
note: This is not a comprehensive list. To search for clinical trials in good general health. If you are interested in learning more about
your area, visit www.searchclinicaltrials.org or www.clinicaltrials.gov. this study, or to find out if you qualify, call 404-851-9934 or visit
www.neurotrials.com.
To learn more about clinical trials, download our Clinical Trials and •••••
Research handout at www.willis-ekbom.org or request a paper copy
using the publication order sheet on page 23. If you live in the New York City area, you may be eligible to
participate in a new research opportunity. We are conducting a
Have you been diagnosed with restless legs syndrome? Are you research study to determine whether there are changes in the
currently taking medication to treat restless legs syndrome retinal structure of the eyes of individuals with Willis-Ekbom
(RLS)? Massachusetts General Hospital, Boston; and Spaulding disease (WED/RLS) compared to individuals with Parkinson’s
Rehabilitation Hospital, Cambridge; are seeking men and disease, individuals with multiple system atrophy, and healthy
women ages 20 to 65 to participate in a research study looking controls. The study will take place at the New York University
at the effects of restless legs syndrome on blood pressure. To Langone Medical Center and will require one visit, lasting
participate, you cannot have diabetes, have high blood pressure or approximately one to two hours. The visit will include an initial
smoke. Participation will consist of three study visits for a total of screening and an eye exam.
up to seven hours. You will receive up to $300 for your participa-
tion. For more information and eligibility requirements, please call There is no direct benefit to you or expense reimbursement
Laura at 617-643-6026 or email lschoerning@partners.org. available from your participation in the study. It is hoped that the
knowledge gained will be of benefit to others in the future. Studies
••••• done for this research study are not a part of your regular medical
Would your friend or family member (not a blood relative, if care and will not be included in your medical record. If interested,
you have WED/RLS) like to make a lasting contribution to please contact Dr. Jose Martinez at Jose.Martinez@nyumc.org.
groundbreaking research? A Johns Hopkins team is recruiting
healthy adult volunteers for a study on the role of glutamate in
WED/RLS. In some cases, reimbursement may be available
for time and travel expenses. To learn more, contact Sherry
Nickerson at 410-550-1046 or snicker2@jhmi.edu.

For Sale – Timeshare Unit in Austria Ski Region


e WED Foundation has received a donation of a one-bedroom timeshare unit located in St. Johann, Pongau, Austria. e unit
is part of the Alpenland Sporthotel. Although the timeshare rights are good for any time of the year, this location is primarily
desirable as a skiing destination. e hotel has a four-star rating (out of five) on the tripadvisor.com website.
Similar units in this hotel have sold recently for about $5,000, but the price is highly negotiable for Foundation members. e
Foundation has no way to make use of this facility, and wishes to sell it. Funds received in the sale will support the ongoing work
of the Foundation.
If you have an interest in purchasing the timeshare or would like more information, please contact the WED Foundation at
dzienkowski@willis-ekbom.org.

22 I NIGHTWALKERS www.willis-ekbom.org
Publications
Publication Order Sheet
Please note that most of our publications are available at www.willis-ekbom.org for viewing and downloading.
Quantity Patient Brochures
Causes, Diagnosis and Treatment for the Patient Living with Willis-Ekbom Disease/Restless Legs Syndrome.
Children and RLS: Restless Legs Syndrome and Periodic Limb Movement Disorder in Children and Adolescents:
A Guide for Healthcare Providers.
Depression and RLS: Special Considerations in Treating Depression when the Patient has Restless Legs Syndrome.
Surgery and WED/RLS: Patient Guide.
WED/RLS in Cognitively Impaired Older Adults.
Medical Bulletin. Contains the latest WED/RLS diagnosis and treatment information for healthcare providers.
Free to members; $10 to nonmembers.
“Revised Consensus Statement on the Management of Restless Legs Syndrome.” Article in September 2013 issue of Mayo
Clinic Proceedings. Provides a practical treatment approach for healthcare providers. Free to members; $5 to nonmembers.

Quantity Patient Handouts Quantity Patient Handouts


WED/RLS Triggers Activity and Exercise
Suggested Coping Methods Depression and WED/RLS
Understanding Augmentation Pain and WED/RLS
Elderly Population Clinical Trials and Research
Understanding Possible “Mimics” Your Child with WED/RLS
The Role of Iron in WED/RLS A Quick Guide to Living with WED/RLS
Medications for WED/RLS Understanding Drug Action
Drug Holidays and WED/RLS WED Foundation Research Grant Program
Symptom Diary for WED/RLS Complementary/Alternative Medicine and WED/RLS
Your First Doctor Visit for WED/RLS Hospitalization Checklist

MEMBERSHIP
Yes, I want to join the Willis-Ekbom Disease Foundation or renew my membership. ($35 U.S. or Canada • $45 International)
(Please make any changes to address on reverse side.)
DONATION
I would like to make an additional donation of $________ for research WED/RLS Quality Care Center program
education where it is needed most
I would like to make a recurring monthly gift of $________ for research WED/RLS Quality Care Center program
Start date: __________ End date: __________ education where it is needed most
I am setting up a monthly auto bill payment to the WED Foundation through my checking account. Please accept my
monthly/quarterly gift of $________ for research where it is needed most
PAYMENT METHOD
I have enclosed a check in the amount of $_______ in U.S. dollars, drawn on a U.S. bank, payable to the RLS Foundation or
the Willis-Ekbom Disease (WED) Foundation.
Please bill $______ to my American Express Discover MasterCard VISA
Card number________________________________________ Expiration date ___________________
CONTACT INFORMATION (We do not sell or share our mailing list.)

Name ________________________________________ Address ______________________________________________

City ____________________________________________ State ____________________ Zip ______________________

Email address _____________________________________________ Phone number _____________________________

www.willis-ekbom.org NIGHTWALKERS I 23
Nonprofit Org.
U.S. Postage
PAID
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Permit No. 289
Address Service Requested

formerly known as the RLS Foundation

3300 Bee Caves Road


Suite 650, #1306
Austin, TX 78746

Tel: 512-366-9109
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