stanford certified as wed/rls quality care center · stanford certified as wed/rls quality care...

NIGHTWALKERSIn search of a good night’s sleep

Winter 2015

Stanford Certifiedas WED/RLSQuality Care CenterPage 3

formerly known as the RLS Foundation

FoundationHeadquartersMove toAustin, Texaspage 5

MedicalMarijuana andWED/RLSpage 8

MassageTherapy:An Updatepage 11

Pain andWED/RLSpage 15

NightWalkers is the officialpublication of the Willis-EkbomDisease (WED) Foundation

Board of DirectorsJacquelyn Bainbridge, PharmD, ChairLewis Phelps, Vice Chair and TreasurerLinda Secretan, SecretaryMichael Brownstein, MD, PhDJohn McDevitt, PhDJames Schaeffer, PhDRobert (Bob) H. Waterman, Jr.Michael Zigmond, PhD

Medical Advisory BoardBirgit Högl, MD, ChairDaniel Picchietti, MD, Vice ChairDiego Garcia-Borreguero, MD, PhDJennifer G. Hensley, EdD, CNM, WHNPSuresh Kotagal, MDClete Kushida, MD, PhD, RPSGTMauro Manconi, MD, PhDWilliam Ondo, MDAbdul Qayyum Rana, MD, FRCPCMichael H. Silber, MB, ChBLynn Marie Trotti, MD, MScArthur S. Walters, MDJohn Winkelman, MD, PhD

Scientific Advisory BoardJames R. Connor, PhD, ChairMichael Aschner, PhDMarie-Francoise Chesselet, MD, PhDChristopher J. Earley, MB, BCh, PhD, FRCPIEmmanuel J. Mignot, MD, PhDClaudia Trenkwalder, MDGeorge Uhl, MD, PhD

Executive DirectorKarla M. Dzienkowski, RN, BSN

NightWalkers is published in the winter,spring, summer and fall. “Ask theDoctor” questions, “Bedtime Stories,”address changes, contributions andmembership inquiries should be sent to:

NightWalkers, WED Foundation3300 Bee Caves RoadSuite 650, #1306Austin, TX 78746

The WED Foundation does not endorse orsponsor any products or services.

©2015 Willis-Ekbom Disease FoundationEditors: Karla M. Dzienkowski , Kris SchanilecMedical Editor: Mark Buchfuhrer, MD,FRCP(C), FCCP

Warning and DisclaimerPersons suspecting that they may haveWED/RLS should consult a qualifiedhealthcare provider. Literature that isdistributed by the Willis-Ekbom DiseaseFoundation, including this newsletter, isoffered for information purposes only andshould not be considered a substitute forthe advice of a healthcare provider.

2 I NIGHTWALKERS www.willis-ekbom.org

From the DirectorExploring Diverse Topics toServe Our Community

In this time of technological advances in communication,NightWalkers newsletter remains a constant for the Foundation toshare information with our members on topics that are of interest tothe WED/RLS community. This issue is no exception.

Readers will notice that we have included two articles on a subject thatsome readers may consider controversial: medical marijuana. As youmight expect, we have received many requests from our members andothers concerning this subject, and our coverage is intended toilluminate some of the issues surrounding medical marijuana.

Be assured that the WED Foundation and its advisory boards take noposition, for or against, the use of medical marijuana for WED/RLS.As always, decisions on any treatment plan should be the result of individual discussions between thoseliving with the disease, their doctors, and others whose opinions they trust.

In this issue of NightWalkers, we are also very excited to announce the relocation of our offices to Austin,Texas. Austin is a vibrant, growing city with an expanding medical community. We look forward toleveraging our connections locally – as well as nationally and internationally – to build a better future forpeople who have WED/RLS.

We have pulled together a great team in Austin: Faith, Mary, Zibby and I look forward to serving you,our members.

You are not alone,

Karla M. Dzienkowski, RN, BSNExecutive DirectorWillis-Ekbom Disease Foundation

Karla M. Dzienkowski, RN, BSNExecutive Director

www.willis-ekbom.org NIGHTWALKERS I 3

The WED Foundation has certified the Stanford Center for SleepSciences and Medicine as a WED/RLS Quality Care Center.Stanford is the fifth institution to join the WED Foundationprogram.

The Stanford Center for Sleep Sciences and Medicine is a renownedsleep center recognized for outstanding patient care and innovativeresearch. Juliane Winkelmann, MD, is a member of the Center. “Asthe birthplace of sleep medicine, Stanford has driven considerablegrowth in sleep research and treatment. Our partnership with theWED Foundation will help improve the quality of life forindividuals living with Willis-Ekbom disease by guaranteeing thehighest standard of care,” says Dr. Winkelmann.

The WED Foundation is establishing a network of certifiedWED/RLS Quality Care Centers to improve diagnosis andtreatment of the disease worldwide. Provider certification requires ahigh level of expertise and experience treating WED/RLS patients.The program benefits patients and families through:

• Recognition of clinics as leaders in the field and as specialty centers for patients who are traveling or in search of knowledgeable healthcare providers

• Availability of clinic staff as information resources for referring primary care providers

• Patient educational offerings, print materials and connections with WED Foundation local support groups

“Access to a higher quality of care is vital,” says WED Foundationexecutive director Karla Dzienkowski. “We are pleased to welcomesuch a distinguished group of physicians and researchers to ourQuality Care Center program.”

To learn more about the WED/RLS Quality Care CenterProgram, visit willis-ekbom.org/quality-care-program.

WED/RLS Quality Care Centers

Stanford Center for Sleep Sciences and Medicine 450 Broadway Street Pavilion B, 2nd Floor, MC 5730 • Redwood City, CA 94063650-723-6601 (central appointment office)Certified healthcare providers:Clete Kushida, MD, PhD, RST, RPSGTChristian Guilleminault, MDChad Ruoff, MDMark Buchfuhrer, MD, FAASM Kathleen Poston, MD, MS (Neurology)

The Johns Hopkins Center for Restless Legs Syndrome5501 Hopkins Bayview Circle • Baltimore, MD 21224410-550-0574Contact: Robin [email protected] healthcare providers:Christopher J. Earley, MB, BCh, PhD, FRCPIRichard P. Allen, PhD

Mayo Clinic Center for Sleep Medicine 200 1st Street SW • Rochester, MN 55905507-538-3270 (central appointment office)www.mayoclinic.org/sleep-center-rsrt/appointments.htmlCertified healthcare providers:Bradley F. Boeve, MDSuresh Kotagal, MDMithri Junna, MDMelissa C. Lipford, MDMichael H. Silber, MBChBErik K. St. Louis, MDMaja Tippmann-Peikert, MD

The University of Texas Health ScienceCenter at Houston (UTHealth)6410 Fannin Suite 1014 • Houston, TX 77030832-325-7080 (Department of Neurology)Certified healthcare provider:William G. Ondo, MD

Innsbruck Medical University Department of Neurology, Sleep Lab and Sleep DisordersOutpatient Clinic Anichstr. 35, 6020 • Innsbruck, Austria+ 43 512 504-23890Contacts: Maria Kuscher, Cesarie Ndayisaba,Manuela [email protected] healthcare providers:Birgit Högl, MDBirgit Frauscher, MDElisabeth Brandauer, MD Thomas Mitterling, MD

How You Can Help Improve WED/RLS Treatment You can help support improved diagnosis and treatment ofWED/RLS my making a designated gift to our Quality CareCenter program. To learn more, visit www.willis-ekbom.orgor call 512-366-9109.

Quality Care CentersStanford Certified as WED/RLSQuality Care Center

Honor RollThe Willis-Ekbom Disease (WED) Foundation is sincerely grateful for thedonations we have received in memory and in honor of the followingindividuals from October 29, 2014, to January 9, 2015:

In Honor of:Liv & Einar AsboRandi BorofskyLauren CanningLisa S. CressmanJoseph DillKarla DzienkowskiJoan ElderCindy HarrisGordon HaugheyRobert KrauszTrevor PayneEzra PoundJerry Vulstek

In Memory of:Jane L. BournJim BriggsJudy BurkeBud DillihuntEvelyn DunnLuise “Liesel” EngelbertBeverly W. FrenchPhyllis HunnJ. Maurice NevinsMrs. Stanley PearceBrenda T. StottsAlberta TerlouwJuanita TherrellElizabeth L. Tunison

Earl G. WogomanJoyce L. Zuhlke

Juanita W. errell passed away onDecember 9, 2014. Juanita was afounding member of the WEDFoundation (then the RLS Foundation),served on the board of directors andstarted the first WED/RLS supportgroup, named Sleepless in Seattle. Inaddition to teaching school and raising afamily, Juanita started the library atNewport Covenant Church in Newport,Washington, which she ran for 19 years.

She greatly enjoyed landscaping with both native plantings andornamentals, including the propagation of thousands oftrilliums.

An avid supporter of the Foundation and others affected byWED/RLS, Juanita touched the lives of countless people inthe WED/RLS community. She will be greatly missed.

“Juanita was a pioneer in bringing awareness to the conditionrestless legs syndrome. As the first support group leader, sheprovided a forum for individuals living with WED/RLS toshare their experiences. e Foundation is thankful for Juanita’sservice to our organization and the WED/RLS community.”Karla M. Dzienkowski, RN, BSN

“She was a dynamic, talented, enormously hardworkingwoman on the board of directors and with support groupleaders. I know she suffered greatly with RLS. I rememberJuanita with great respect and admiration.”Sheila Connolly

“Juanita was one of the few whose name was mentioned withVirginia, Pickett, Art and Richard. She was clearly one of afew pillars and will be truly missed.”Robert Balkam

“I was very sorry at the passing of Juanita errell. I communicatedwith her many times by email and had the pleasure of getting toknow her personally at national meetings. She was always friendlyand encouraging to our own personal work on restless legssyndrome… She stands as one of the original RLS pioneers… She was active in advocating for the WED/RLS community.She will be missed.” Arthur S. Walters, MD


WED Foundation NewsRememberingJuanita Therrell

Give to the MaxRaises $21KWe are so pleased with the response to this year’s “Giveto the Max” challenge on November 13. anks to thegenerosity of our friends who provided matching fundsand to over 50 individuals who made donations throughgivemn.org and our website, we exceeded our goal andraised $21,641.10 in just one day!

is support will help us continue serving your kids,families, neighbors and friends who have WED/RLS, and shows just how strong we are when we band together.To everyone who participated, thank you!

Juanita W. errell


WED Foundation News

The Willis-Ekbom Disease Foundation has moved itsheadquarters to Austin, Texas.

Over the past year, I have led a task force on the Board ofDirectors to evaluate the best location for the headquarters ofthe Foundation. We considered many alternatives, includingstaying in Rochester, moving to the area around our nation'scapitol, moving to an area with a large-scale medical researchcommunity (that is, Boston or San Francisco) and moving toAustin, Texas.

Ultimately, the board decided that Austin has the most to offerour Foundation – not only because it is the home of our currentexecutive director, Karla Dzienkowski, but also because it is amajor center for medical research, a location with a highlyeducated and committed workforce, and a community with avery strong support system for nonprofit organizations like ours.

The Foundation has historically established its headquartersbased on the residence of its executive director. We wereoriginally headquartered in North Carolina, because that iswhere the executive director, Carolyn Hiller, lived. When shemoved to Rochester, Minnesota, we moved the organizationwith her. Following that pattern, and in light of recent staffchanges, Austin made the most sense.

The Foundation has benefitted greatly from a long-standingrelationship between Karla and National Charity League, Inc.(NCL). If you’re not familiar with the NCL, I urge you to visitwww.nationalcharityleague.org to learn more about thisremarkable philanthropic organization. They foster mother-daughter relationships and are committed to communityservice, leadership development and cultural awareness.Through her past work as president of the Texas chapter ofNCL, Karla has built a solid network of local relationships andresources that will, coupled with those already establishednationally and internationally, provide a large pool of support tothe Foundation going forward.

Our new offices are in an office suite in a desirable Austinlocation. We are leasing 640 square feet of space and haveunlimited access to conference room, kitchen, reception andother areas that are shared by tenants in the office complex.This new space will meet our organizational needs at a lowercost than our Rochester lease.

Moving an organization halfway across the country can presentchallenges, but so far we’re meeting those challenges head on.We have purchased used furniture from another nonprofitorganization, saving thousands of dollars. We are transitioningour entire computer data storage and services system from theold (and failing) hardware-based system in Rochester to anInternet-based system (in “the cloud”) for a more reliable andsecure IT solution. We were able to engage a nonprofitorganization in Atlanta to manage the data transfer project at amuch lower cost than any commercial service providers thatprovided bids.

The final move from Rochester to Austin took place in January,when paper records, some office equipment, and other usefulresources were transferred to our new location. A big thank youto John and Karla Dzienkowski for their countless hoursdevoted to making this move successful, not to mention thecross-country trek!

Our new phone number is 512-366-9109. Phone calls to ourRochester number will be transferred automatically to our newoffices in Texas for several months.

The Foundation’s new mailing address is:3300 Bee Caves RoadSuite 650, #1306Austin, TX 78746Tel: 512-366-9109

Foundation Moves Headquarters to Austin, TexasBy Lew PhelpsVice Chair and Treasurer, WED Foundation Board of Director


Quality Care Centers

When Tom Peters and I were doing the research for, and writing,In Search of Excellence, we were struck by how badly someAmerican companies were battered by Japanese and Europeancompetition. To oversimplify a bit, but not by much, Americanmanagements were not listening. Not listening to their customers.Not listening to American quality gurus like W. Edwards Demingand Joseph M. Juran. e Japanese and many Europeans werelistening. We weren’t. As a result, especially in the auto andconsumer electronics industries, we produced a lot of junk.

When American companies, large and small, got their acts togetherwith such programs as “total quality” and “six sigma,” theircustomers responded, market share went up, costs went down(less mistakes and rework), and profits improved. Of signalimportance, American companies stopped losing business toforeign competition.

Years ago I gave a speech to a big convention of doctors. My centralpoint was that doctors might not be listening to their patients. Ahuge opportunity, I opined, might be waiting for those doctorswho listened, then followed the same approaches to quality thatAmerican industry had found useful. e first remark from theaudience was this: “e only thing you’ve said that I agree with isthat you ‘don’t understand medicine.’” Fortunately (for me), othermembers of the audience came to my defense.

But many must have agreed with that first statement. Just a fewdays ago the New York Times tells me that “physicians wait just 18seconds before interrupting patients’ narratives of their symptoms.”And the researchers who produced that quote discovered that over60 percent of patients misunderstand directions after a doctor’svisit. Evidently there is room for improvement in the conversationbetween patients and doctors.

One glowing exception to this assertion seems to be our nation’snetwork of stroke centers. Not long ago a close friend hadsymptoms of what might have been a stroke. (It wasn’t, thankgoodness.) We rushed her to a nearby certified Primary StrokeCenter, where she was admitted to the hospital immediately andasked a battery of questions to help sort out whether a stroke wasimminent or in progress, then rushed past the usual admittingprocedures so that the suspected stroke could be further diagnosedand, if needed, immediately treated.

Such a streamlined process for listening had not always been thecase. In 2003, the American Stroke Association, concerned with thequality and speed of stroke management, launched a programunder which more than 1,000 stroke centers nationwide now have

been certified. To receive certification, a center must followguidelines that ensure adherence to best practices for strokediagnosis and care. ey must show that they can tailor treatmentto individual needs, and they must show that they can be part of anetwork that promotes the flow of information across settings andproviders. is sounds exactly like the kind of action that industryhas taken to promote total quality.

One of the questions our Foundation gets asked most frequently is“Where do I go for good diagnosis and treatment of my suspectedcase of WED/RLS?” It’s been a difficult one for us. We don’t wantto be in the business of recommending individual doctors; we can’tkeep track of them all, and we don’t want to be in the business ofplaying favorites.

But, we reasoned, we can parallel what the stroke community andsome others like it are doing for quality in their own disciplines.With that in mind, we have launched what we call our “QualityCare Centers.” To be a WED/RLS Quality Care Center, a medicalfacility must be able to demonstrate:

• Deep experience in treating cases of WED/RLS• Experience in managing WED/RLS patients with a wide range of

complexity and comorbidities using approved and off-label medications

• Experience in treating cases of augmentation caused by dopaminergic treatments

• Availability of equipment for measuring iron levels, particularly serum ferritin levels

• Ready access to other doctors in related fields such as psychiatry, neurology, pulmonology, hematology and sleep apnea

So far, we have designated five WED/RLS Quality Care Centers –four domestic and one in Europe: Johns Hopkins, Mayo Clinic,Stanford, the University of Texas Health Sciences Center atHouston, and Innsbruck Medical University in Austria. We lookforward to many more.

And as with the rest of our big goals on awareness, treatment andfinding that magic cure, we have miles to go before we sleep. Onearea in particular, one that started this article, and one where youcan help, is patient feedback. If our Quality Care Centers are tomean anything, we need to know that they are working well. And“working well” means listening to and serving your needs.

I regularly read reviews on, say, books at Amazon and movies atRotten Tomatoes. In the same way, we need letters from you that ratehow well you are being served by your own doctors, whether or not

Continued on page 6

Quality Care Centers: How We Are ListeningBy Bob Waterman Chair Emeritus, WED Foundation Board of Directors

Quality Care CentersContinued from page 5

they are part of our Quality Care Center network. If they are part ofthe network and doing well, or not so well, we need to know that.

Just as our nation has surged forward in the quality ofmanufactured goods through the total quality movement, andas we have saved thousands of lives through an effective strokenetwork, I’m hoping all our kids and grandkids will sleep betterat night because the quality of our WED/RLS care has vastlyimproved. at will happen when we can demonstrate that weare listening to, and helping, you.__________________________________________________1 “Doctor, Shut Up and Listen,” Nirmal Joshi, New York Times, Jan. 4, 2015.

Share Your FeedbackHave you visited a WED/RLS Quality Care Center?Share your experience with us by sending an email [email protected].

Learn MoreVisit www.willis-ekbom.org for complete information onWED/RLS Quality Care Center certification requirements.

How High is the Bar?In addition to meeting high standards as a medical facility (see page5), certified WED/RLS Quality Care Centers must also show thatmedical staff members have a deep level of experience and expertise.Clinicians must:

• Hold an MD or PhD (or PhD equivalent) degree• As a team, have seen a total of at least 200 unique WED/RLS

patients, with each individual physician member having seen at least 50 unique WED/RLS patients

• Have a high level of experience managing WED/RLS patients with a wide range of complexity and comorbidities

• Have board certification or its equivalent in sleep medicine, or in neurology with a specialization in movement disorders

• Have completed at least 25 hours of continuing medical education in sleep medicine or movement disorders neurology (with at least six hours dedicated to education in WED/RLS) in the prior three years



Treatment

e medical and recreational use of marijuana is increasing in theU.S. e drug remains illegal under federal law (even though it islegal in 23 states and the District of Columbia), but a federalspending bill passed in December 2014 prohibits the JusticeDepartment from using federal funds to enforce this ban in stateswith medical marijuana laws.

Medical marijuana is recognized as a legitimate medical applicationfor many disease states. Willis-Ekbom disease (also known as restlesslegs syndrome, or WED/RLS) is one disease for which patients arelooking to experiment with medical marijuana to relieve symptomswhen more conventional treatments are unsuccessful, too expensiveor cause unwanted side effects.

Current treatment for WED/RLSCurrent treatment for WED/RLS includes dopaminergic agents, analpha-2-delta ligand subunit drug, and other medications that are notapproved by the U.S. Food and Drug Administration (FDA) fortreating WED/RLS. e FDA-approved drugs demonstrateeffectiveness by enhancing dopamine activity in the brain (Requip,Mirapex, Neupro Patch) or by modifying calcium channels on nerves(Horizant), which changes the excitability of nerves that carryWED/RLS sensations or pain.

Medical marijuana in WED/RLSere are no current studies or clinical trials on the use of medicalmarijuana in WED/RLS. ough marijuana is not FDA approvedfor medical indications in the disease, anecdotal evidence from somepatients’ experiences with the drug have shown improvement insome of the symptoms commonly associated with WED/RLS.

Marijuana works mainly by acting on multiple cannabinoid receptorsin the brain to provide variable psychoactive effects (that is, affectingmental processes) on areas including motor activity, coordination andpain relief by inhibiting prostaglandin biosynthesis and thus blockingpain receptor pathways.

Although there are no studies examining the use of marijuana fortreating WED/RLS, there is some clinical experience available basedon its anecdotal use by many patients. Typically, ingested marijuana(through brownies or cookies, for example) does not seem to benefitWED/RLS very much, while inhaled marijuana (through amarijuana cigarette or vaporizer) works very quickly and effectively.Most WED/RLS sufferers report that after only a few puffs of amarijuana cigarette or a few inhalations of vaporized medicalmarijuana, even very severe symptoms are relieved within minutes.e relief does not last very long, wearing off after one or two hours.erefore, inhaled marijuana works best for WED/RLS symptomsthat occur mainly at bedtime. Patients have reported that a one-

month supply of medical marijuana may last three to four monthswhen used to treat bedtime WED/RLS symptoms.

Marijuana is a structurally diverse chemical. Very little is knownabout the 489 constituents of the marijuana plant, Cannabis sativa.It is known that 70 of these constituents are cannabinoids, and theremainder are potentially unwanted neuroactive substances that crossthe blood-brain barrier. An important distinction regarding cannabisproducts is that tetrahydrocannabinol (THC) is the majorpsychoactive ingredient (that is, it affects mental processes), andcannabidiol (CBD) is the major non-psychoactive component. It isbelieved that products that are high in CBD and low in THC willproduce wanted effects in the brain with little or no side effects onmental processes.

Some of the cannabinoids widely consumed are: • Cannabinoid-rich preparations of cannabis in the herb (marijuana)

or resin form• Cannabinoid-containing pharmaceutical products containing

natural cannabis extracts (Sativex, a GW Pharmaceuticals drug in clinical trials in the U.S. and approved for use in Canada andother countries)

• Synthetic cannabinoid (dronabinol (Marinal)),tetrahydrocannabinol (THC) or nabilone (Cesamet)

Studies on medical marijuana for treating pain and muscle spasticityhave shown a significant reduction in symptoms compared toplacebo. In addition, these studies found no significant adverseeffects, and patient tolerability to marijuana was good. e mostcommon side effects of marijuana reported included dizziness,fatigue, dry mouth and nausea.

Many factors limit the use of medical marijuana in WED/RLS. First,no clinical trials have documented its benefits for treatingWED/RLS. Second, studies of medical marijuana in pain andmuscle spasticity involved small study populations over a short periodof time, and therefore do not provide information on how a patientwould respond to long-term use. We also do not know the sideeffects or complications of using medical marijuana over the longterm. Finally, the use of marijuana is very limited in the U.S. as it isstill considered illegal under federal law.

In summary, in addition to federal acceptance of the legality ofmarijuana, more clinical trials are needed to validate whether theuse of medical marijuana would be beneficial in patients withWED/RLS.

Medical Marijuana and WED/RLSBy Jacquelyn Bainbridge, PharmD, and Mark Buchfuhrer, MD, FRCP(C), FCCP, FAASM

Treatment

Please note: e following essay is the opinion of the author only.Publication in NightWalkers does not imply endorsement by the WEDFoundation, its employees, its Board of Directors or its Medical AdvisoryBoard. No studies have documented the benefits of medical marijuana fortreating WED/RLS, and its use remains illegal under federal law.erapies and results described reflect the experience of the author andcannot be generalized to everyone with WED/RLS. It is important to talkto your healthcare provider before making any changes to your treatmentregimen, and to take into consideration the legal status of marijuana inyour jurisdiction.

WED/RLS is often trivialized, ridiculed and the butt of jokes. Agenetic, neurological disorder, it ranks with the worst diseases interms of playing havoc on the lives of the afflicted and of theirspouses and loved ones.

People who suffer from this disease describe symptoms in differentways; for me, it’s as if a thousand wriggling, angry worms weretrapped in my thighs. If it sounds like it would make you crazy, youare correct. One of the horrid things about WED/RLS is that onebegins to doubt one’s sanity. And, when you voice a description ofthe symptoms, describing them akin to angry worms, it does soundas if you are one step away from hearing voices.

Nightwalker’s syndrome is a nickname for WED/RLS. Linked tocircadian rhythms, the symptoms get much worse at night. Sleepdeprivation accrues to a debilitating extent, eventually impairingcognitive skills and judgment. At one point, my WED/RLS specialisttold me he was amazed I had achieved all that I have. How did I everhave the attention span to finish my doctorate? How have I gottenon plane after plane to go to over 60 countries? How have I pursuedmy passion for dance, theater and music? e answer is, with greatdifficulty and determination.

WED/RLS often has a comorbidity factor, partnering with sleepapnea or another sleep disorder. Mine partnered with narcolepsy.is was discovered after I went to sleep one afternoon while drivinghome on the freeway. Fortunately, no tragedy occurred. Until I gotthat part of the disorder under control, I had to hire someone todrive me around for a few months. If I had a nine-to-five job, Iwould have had to declare disability long ago, but luckily I work in aprofession that allows for flexible hours and freedom of movement.

Like many WED/RLS sufferers, I found relief through a cocktail ofdrugs. For many years, I took a combination of seven strong,expensive drugs, each laden with side effects, and thus was able tolead a semblance of a normal life.

Each January I would consult my physicians. Which of these drugscould I stop taking? What were the long-term effects? Were there anyother choices? In 2013 when I asked my annual question, I was givenan option of going into a medical facility for a few weeks and

stopping all medications cold turkey, then adding them back, one byone, as needed. I looked at my husband, the blood drained from myface, and I nearly ran from the examining room.

But then, a friend suggested I try medical marijuana. I was skeptical.I did not have much hope for any relief. I was embarrassed. I wasafraid. Although legal in California, medical marijuana is a federaloffense. Not only did that disturb me as a law-abiding citizen, butalso my profession requires multiple federal licenses, which I assumedwere in jeopardy.

I have been a card-carrying medical cannabis user since January2013. In addition to making my WED/RLS manageable, medicalmarijuana has largely done away with my narcolepsy, insomnia,attention deficit hyperactivity disorder (ADHD) and chronic pain. I usually sleep through the night and awaken refreshed. I no longertake the seven drugs I had been taking, but control my symptomswith only two medications: Neupro Patch and TetraLabs GoldCaps(a pharmaceutical-grade marijuana softgel that is available invarious strengths).

For me, all of the negatives of medical marijuana, known andunknown, don’t compare to the negatives of taking the sevenmedications that I was on for years. I’m more alert and less drowsywith judicious use of medical marijuana than I was with the FDA-stated side effects of the other drugs.

Laws on medical marijuana use vary by state. In California, where Ilive, you must obtain a recommendation from a physician and pickup the medication from special dispensaries. I recommendAmericans for Safe Access (www.safeaccessnow.org) as a nationalresource for how to be legal with medical marijuana.

Medical marijuana gave me my life back. Before I started taking it, Iwas in the top five worst cases I’d ever heard about. I was a crazed,sleep-deprived wreck. Now, I usually manage to get enough sleep tofeel “normal” during the day. My blood pressure, weight andcholesterol are down. I get more exercise. Friends make commentslike “you look fabulous,” “what have you done?” and “you were reallybad.” I had no idea how bad I was, until I got better.

Janice Hoffmann is senior vice president of investments with MorganStanley and a past chair of the WED Foundation Board of Directors. Aformer music professor, she enjoys performing jazz and musical theater,playing tennis, traveling, and spending time with her husband, Larry,and her Maltese dog, Carina.

My Experience with Medical MarijuanaBy Janice Hoffmann


Pharmacy Update

Medicines play an important role in our health. When they are nolonger needed, however, it is important to discard them appropriatelyto avoid harm to others. Unused medications create a public healthand safety concern because they are highly susceptible to accidentalingestion, theft, abuse and misuse. Also, improper disposal has thepotential of adversely affecting the environment and human health.

In the U.S., new collection methods have recently become available.Keep reading to learn about different drug disposal options forexpired, unwanted or unused medicines.

Don’t share. Follow instructions. Use take-back programs.First and foremost, do not give your medicine to others.Doctors prescribe medicines based on a person’s specificsymptoms and medical history. A medicine that works for youcould be dangerous for someone else. When in doubt aboutproper disposal, talk to your pharmacist.

The U.S. Food and Drug Administration (FDA) advises to firstfollow any specific disposal instructions on the drug label or patientinformation that accompanies the medication. Do not flushprescription drugs down the toilet unless this information specificallyinstructs you to do so.

Another option is to take advantage of community drugtake-back programs that allow the public to bring unused drugs toa central location for proper disposal. Call your city or countygovernment’s household trash and recycling service to see if atake-back program is available in your community. The U.S. DrugEnforcement Administration (DEA), working with state and locallaw enforcement agencies, periodically sponsors a NationalPrescription Drug Take-Back Day, when certain locations holdhousehold hazardous waste collection events for prescriptionand over-the-counter drugs.

New in 2014: Mail-back programs and collection receptaclesThe DEA released a final regulation on September 9, 2014, toexecute the Secure and Responsible Drug Disposal Act of 2010 inaccordance with the Controlled Substance Act by expanding optionsto collect controlled substances from individuals for securedestruction. Previously, the Controlled Substances Act made no legalspecifications for patients to dispose of unwanted drugs except to givethem to law enforcement; this meant that pharmacies, doctors’ officesand hospitals were banned from accepting them. Most people endedup flushing their unused drugs down the toilet, throwing them in thetrash or keeping them in the household medicine cabinet.

The final rule allows community pharmacies to conduct take-backprograms and gives people the option of mailing back their unused,unwanted or expired prescription medications or placing them in apharmacy-maintained collection receptacle. Collection methodsinclude:

1. Take-back events conducted by law enforcement or community pharmacies (please note: the DEA is not providing take-back programs at the time of this publication but may do so in the future)

2. Mail-back programs administered by authorized manufacturers, distributors, reverse distributors, retail pharmacies, narcotic treatment centers, law enforcement agencies, and hospitals and clinics with on-site pharmacies

3. Collection receptacles (permanent drop-off boxes) operated by any of these same entities. Authorized retail pharmacies and hospitals or clinics with on-site pharmacies may also operate collection receptacles at long-term care facilities

To find authorized collectors in your community, call the DEAOffice of Diversion Control’s Registration Call Center at1-800-882-9539. For more information about the final rule, visitwww.deadiversion.usdoj.gov/drug_disposal.

More informationRegardless of where you live, it is very important that you disposeof your medications properly to avoid harm to others or to animals.For guidance, talk with your pharmacist, or visitwww.healthycanadians.gc.ca (Canada) or www.fda.gov (U.S.).

Is it okay to toss medications?If you are unable to dispose of a medication through a collection venue, and you do not have special disposal instructions, then you can safely dispose of most drugs in the household trash. Both the FDA and the Government of Canada advise taking these steps for safe disposal: 1. Remove the medication from the original container and mix it

with an undesirable substance, such as used coffee grounds or kitty litter. This makes the drug less appealing to children and pets, and unrecognizable to people who may intentionally go through the trash seeking drugs.

2. Place the mixture in a sealable bag, empty can or other container to prevent the drug from leaking or breaking out of a garbage bag.

3. Before throwing out a medicine container, scratch out all identifying information on the prescription label to make it unreadable. This will help protect your identity and the privacy of your personal health information.

Disposing of Unused Medications: An UpdateBy Jacquelyn Bainbridge, PharmD; and Caitlin Butler, PharmD candidate



Complementary Corner

Massage therapy includes a variety of techniques that may help withsymptoms of WED/RLS. According to the National Center ofComplementary and Alternative Medicine, there is documentationof massage in ancient writings from China, Japan, India and Egypt.The research on massage is inconsistent, and very few researchstudies examine its benefits with WED/RLS. What is known is that,as with any medication or treatment, the treatment must beconsistent to get long-term benefits. Massage can be beneficial inreducing anxiety and stress, which both may exacerbate thesymptoms of WED/RLS.

Massage therapy has few risks involved and is usually performed bya trained therapist. In the United States, 44 states and the District ofColumbia regulate massage therapists. However, standards oftraining differ among states.

It is not uncommon to hear from persons with WED/RLS that self-massage to the legs is helpful to relieve symptoms. While manypatients report that massage therapy is helpful, there is little evidenceto support this. Massage may be effective in treating WED/RLSbecause of the natural release of dopamine following massagetherapy (Field et al., 2005). In one study, urine dopamine levelsincreased by 28 percent after massage (Field, 1998). Anotherpossible benefit is counterstimulation to the cerebral cortex, whichmay help diminish WED/RLS symptoms while the patient isundergoing massage therapy. Other theories of massage therapistsinclude the possibility that the tactile stimulation during massagemay lessen neural activity in the brain and therefore symptoms.Lastly, massage improves circulation, which may also relieve thesymptoms of WED/RLS.

Based on the experience of massage experts, it is thought that someof the uncomfortable sensations in the leg associated withWED/RLS may be the result of excessive tension of the piriformismuscle in the lateral rotator group, which consists of six smallmuscles that all externally rotate the femur in the hip joint.Therefore, the massage therapist may focus the massage around thepiriformis muscle to help with WED/RLS symptoms. As in othercomplementary and alternative medicine evidence, there is a lack ofresearch to support this in the literature.

Deep tissue massage applies a deep pressure that is beneficial inreleasing chronic muscle tension, with focus on the deepest layers ofmuscle tissue, tendons and fascia (the protective layer surroundingmuscles, bones and joints). The movement is slow and the pressuredeep, concentrating on areas of tension. This massage increasesblood flow through the body and helps reduce inflammation. Deeptissue massage to the hamstrings, quadriceps and lower extremitieshas been shown to be beneficial to relieving the symptoms of

WED/RLS (Russell, 2007). Somepeople may report that this type ofmassage is painful. Be sure and letthe massage therapist know if themassage is too deep and hurtingyou. He or she will adjust to yourcomfort.

Finding the right massagetherapist for youProfessional organizations that canhelp you with the selection of amassage therapist include theAmerican Massage TherapyOrganization, the National Association of Massage Therapists, andAssociated Bodywork & Massage Professionals. It is important tofind a massage therapist that is credible and reliable. The followingquestions may help you in your search.

1. Is the therapist certified in your state?2. Does the therapist carry professional malpractice insurance?3. Does the therapist keep medical records or take Subjective,

Objective, Assessment and Plan (SOAP) notes on your sessions?4. Is the therapist certified in any other therapies in addition to

massage?

Massage therapy is a valid and reliable form of alternative orcomplementary treatment for WED/RLS. If you are currently usingmassage therapy and it works for you, then you should continue touse it. If you think you would like to try it, contact the professionalorganizations listed above to learn more about massage and the bestway to choose a healthcare provider who is a massage therapist. Andlast but not least, be sure to tell your regular healthcare provider thatyou are choosing massage as an intervention for your WED/RLS.

ReferencesAmerican Massage Therapy Organization, www.amtamassage.org.

Ruthann Johnson, “How To Find a Massage Therapist,” Associated Bodywork &Massage Professionals, accessed January 15, 2015, http://www.massagetherapy.com/articles/index.php/article_id/125/How-To-Find-a-Massage-Therapist-.

Field, T. 1998. “Massage therapy effects.” American Psychologist 52: 1270–81.

Field, T., Hernandez-Reif, M., Diego, M., Schanberg, S., & Kuhn, C. 2005.“Cortisol decreases and serotonin and dopamine increase following massagetherapy.” International Journal of Neuroscience 115 (10): 1397–1413.

Mitchell, U. 2011. “Nondrug-related aspect of treating Ekbom disease, formerlyknown as restless legs syndrome.” Neuropsychiatric Disease and Treatment 7: 251–7.

National Association of Massage Therapists, http://namtonline.com.

Russell, M. 2007. “Massage therapy and restless legs syndrome.” Journal ofBodywork and Movement Therapies 11: 146–50.

Norma G. Cuellar, PhD, RN, FAANProfessor, Capstone College of Nursing,University of Alabama

Massage Therapy and WED/RLSBy Norma G. Cuellar, PhD, RN, FAAN


In the NewsBy Lynn Marie Trotti, MD, MSc

Migraine and WED/RLSMidlife Migraine and Late-life Parkinsonism. AI Scher et al. Neurology. September 2014.

Background: Migraine headaches are one of the most common neurologicaldisorders in adults. Prior studies have suggested that patients withmigraines are more likely to have WED/RLS, and vice versa.

Research: e researchers used data from a study that has been ongoing since1967 called the AGES-Reykjavik Study. is study was initiallystarted to evaluate heart disease in Iceland and has collected extensiveinformation about participants at different points in time. Based onearlier studies showing a link connecting WED/RLS and othermovement disorders with migraine, the researchers evaluated whetherhaving migraine in middle age predicted either WED/RLS orParkinson’s disease in later life.

When participants were roughly middle-aged (at an average age of51, ranging from age 33 to 65), they were surveyed about headachefrequency and characteristics. Years later (at an average age of 77,ranging from age 66 to 96), they were asked the four InternationalRLS Study Group (IRLSSG) questions about WED/RLS symptoms,as well as questions about Parkinson’s disease. In their overall group of5,620 subjects, 23 percent answered yes to all four IRLSSG questionsand were considered to have WED/RLS. Subjects with migraineheadaches with aura and subjects with headaches other thanmigraines were more likely to have WED/RLS than subjects withoutheadaches. Subjects with migraine headaches with aura were alsomore likely to report having a diagnosis of Parkinson’s disease.

Bottom Line:People with headaches have higher rates of WED/RLS than peoplewithout headaches.

New Questions: e study authors speculated on how headaches and WED/RLScould be related, including a problem with brain dopamine (whichappears to be involved in both disorders). However, the cause of theassociation between these two disorders remains to be determined.

WED/RLS in Rural EcuadorPrevalence of Willis-Ekbom Disease in Rural Coastal Ecuador. A Two-phase, Door-to-door, Population-based Survey.OH Del Brutto et al. Journal of the Neurological Sciences.September 2014.

Background: A few past studies have tried to determine the prevalence ofWED/RLS in tropical regions. ese studies have generally suggestedthat WED/RLS is rare in these areas.

Research: The study authors sought to evaluate how commonly WED/RLSoccurred in a rural, coastal region of Ecuador. Because prior studiesevaluating WED/RLS in tropical regions have been small or useddiagnostic methods that may not have been fully accurate, theauthors performed a large study (665 people) with a two-stepdiagnostic evaluation for the disease. In the first step, all 665 peoplewere given a Spanish-translated version of the four IRLSSGdiagnostic questions for WED/RLS. In the second step, everyonewho was considered to have suspected WED/RLS based on thequestionnaire (94 people) and an additional 188 people who werenot suspected to have WED/RLS based on the questionnaire (butwere the same age and gender as the people suspected to haveWED/RLS) were evaluated by a neurologist or sleep specialist withan interview and neurological exam to determine if they had thedisease. Six percent of the 665 people were diagnosed withWED/RLS using this approach. Using only the questionnaire (notthe detailed evaluation by the neurologist or sleep specialist) wouldhave resulted in misdiagnosing as WED/RLS a number of otherconditions (such as knee arthritis).

Bottom Line: WED/RLS occurs in six percent of people in rural Ecuador, whichis more commonly than previously thought.

New Questions: The IRLSSG questionnaire did not perform as well as an expertevaluation, but an expert evaluation is not always possible in largestudies of hundreds of people; are there more accurate ways todiagnose WED/RLS when expert evaluation is not possible?


In the NewsImpulse Control Disorders and Dopamine AgonistMedicationsReports of Pathological Gambling, Hypersexuality, and CompulsiveShopping Associated with Dopamine Receptor Agonist Drugs.TJ Moore et al. JAMA Internal Medicine. October 2014.

Background:Relatively small studies have suggested that dopamine agonistmedications may result in compulsive behaviors (for example,gambling, inappropriate sexual behavior or excessive shopping) inpatients treated for WED/RLS or Parkinson’s disease.

Research: The U.S. Food and Drug Administration (FDA) takes reportsfrom patients and health professionals about suspected sideeffects from medications. Individuals can decide whether or notto report a side effect to the FDA, and it is estimated that lessthan 10 percent of side effects (perhaps as few as one percent)are reported. The authors of this study used the FDA databaseof all reported serious side effects over 10 years (from 2003 to2012) to identify all cases of impulse control adverse events.These included a total of 1,580 events, of which the three mostcommon impulse control disorders were pathologic gambling,hypersexuality and compulsive shopping.

In 45 percent of these reports, the patient was taking a dopamineagonist medication for Parkinson’s disease or WED/RLS (or rarely,for other disorders). The increase in impulsive behaviors was seenfor all dopamine agonists studied by the authors, but the effect wasmost pronounced for pramipexole and ropinirole.

This study was limited by the fact that it relied on voluntaryreporting of medication side effects, and there may be reasons whyside effects are reported more commonly with some medicationsthan others. For example, if doctors already suspect dopamineagonists cause gambling, they may be more likely to reportgambling when it occurs in a patient taking a dopamine agonist.The authors concluded that patients, families and caregivers shouldbe warned about the possibility of impulse control problems inpatients taking dopamine agonists.

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

New Questions: Are some dopamine agonist medications less likely than othersto trigger impulse control problems in patients withWED/RLS? If a WED/RLS patient develops an impulse controlproblem on one dopamine agonist, what are the risks of trying adifferent dopamine agonist?

WED/RLS and Type of Dialysis in Patients withKidney FailureSleep Disorders in Patients with End-stage Renal DiseaseUndergoing Dialysis: Comparison Between Hemodialysis,Continuous Ambulatory Peritoneal Dialysis and AutomatedPeritoneal Dialysis. RLM Losso et al. International Urology and Nephrology.October 2014.

Background:WED/RLS is very common in patients who have kidney failureand require dialysis. Several different types of dialysis are available,but it is not known if one is superior for patients with WED/RLS.

Research: In this study, the authors sought to compare sleep symptoms inpatients receiving one of three different types of dialysis:hemodialysis (performed three times per week in a clinic orhospital setting), continuous ambulatory peritoneal dialysis(CAPD, performed several times throughout the day in thehome setting) or automated peritoneal dialysis (APD,performed every night in the home setting). WED/RLS wasassessed using the four IRLSSG questions, and patients wereconsidered to have WED/RLS when they answered yes to allfour. WED/RLS was significantly more common in patientsdoing nighttime APD, present in 50 percent of these patientscompared to 23 percent receiving hemodialysis and 33 percentreceiving daytime CAPD.

Bottom Line: WED/RLS occurs commonly in patients undergoing dialysis forkidney failure, and the likelihood of having WED/RLS may varyby type of dialysis.

New Questions: Should a diagnosis of WED/RLS be part of the decision-making for which type of dialysis is to be performed in patientswith kidney failure? If a patient develops severe WED/RLSwhile undergoing peritoneal dialysis, does changing to adifferent kind of dialysis (hemodialysis) help?

Living with WED/RLS

Having come of age in the 1950s, I can vividly recall the timewhen my mother and her friends would cover their mouths andsay in a low whisper, “She has ‘C’, you know!” Like Victorianwomen talking about venereal disease, even to say out loud thata friend had cancer was to inflict shame on the person and theirfamily. I was never sure why a disease that appeared to strikepeople of all stations of life, wealthy and wicked alike, should beso shameful, but I learned that cancer was not to be talkedabout in polite company. What a relief it is now to be open andhonest, allowing us to share information, comfort and supporton what is, after all, simply one of many misfortunes that afflicthuman lives.

I’ve been remembering those days as I notice the flood of bookson death and dying. One can hardly open a book review,browse on amazon.com, or visit a bookstore without finding alarge section of books advising us on how to think about death,how to stave it off a few years, how to grieve, and how toprepare for it. I found myself reading these books following myonly brother’s death from Parkinson’s disease. But I have beensurprised that much of what I read to help me deal with mygrief had a great deal to tell me about how I should be living mylife now.

These books on death urge us to consider planning,demystifying and otherwise bringing out from the darkness theissues surrounding the end of life. Yet aren’t these issues nearlythe same as those faced by individuals living with a conditionthat can be debilitating and painful, yet not easy for outsiders tosee or understand? Willis-Ekbom disease (restless legs syndrome,or WED/RLS) as I hardly need say to readers of NightWalkers,can leave one tired, cranky and occasionally unpleasant to bearound. (Full disclosure: Although I don’t suffer fromWED/RLS, I have lived with chronic pelvic pain, often at adebilitating intensity, since 1995.) Reading about dying and thedays and months near the end of life has opened up my mind toways in which openness, preparation and sharing with otherscan help make our lives easier and gain us allies in whatotherwise can be a lonely journey.

I’ll start by recommending a deeply funny, painfully honestaccount by New Yorker cartoonist Roz Chast of the final years ofher parents’ lives. In Can’t We Talk About Something MorePleasant?, Chast tells in cartoon form about the pressures andeven humor of taking care of her complaining, obstinate, daffymother and father. Deeply loving and honest – painfully so attimes – Chast reminds us of how those of us suffering can makethings harder or easier for ourselves and those we love.

Another New Yorker author, Atul Gawande, a physician andHarvard Medical School professor, has written a wise,compassionate book on the end of life: Being Mortal: Medicineand What Matters in the End. The son of two physicians,Gawande tells the story of how his father had carefully plannedfor his own care at the end of life, providing family and doctorswith explicit written instructions. Yet his wife, Gawande’smother, panicked, nearly hijacking his father’s wishes until thefamily persuaded her to agree to stop treatment. The message ofthis book is aimed at doctors as much as patients. “Ask yourpatient what is important to them in life and when that is nolonger within their ability to achieve, don’t fight a war simply towin time in misery.” Gawande’s counsel, it seems to me, issomething that those of us whose lives are diminished in someway by hardship should ask ourselves: What do we want out ofour lives? Can we accomplish it in spite of the obstacles set infront of us? Can we be as happy shifting our desires, seeing thatgiving up one set of goals frees us to flourish in ways we hadnot expected?

Other books vie for a place on our reading list. Bronnie Ware’sThe Top Five Regrets of the Dying reminds us of how to live ourlives now, so we won’t have to share the regrets of wishing wehadn’t worked so hard, had let ourselves be happier, had stayedin touch with our friends, had had the courage to express ourfeelings and the wisdom to live our lives true to ourselves andnot to the expectations of others. Based on her years working inpalliative care, Ware provides useful guides for action we cantake now, even as we face pain, exhaustion and discouragement.

These are only three of many books on the subject. I urge thoseof us who live in pain or discomfort to pick up one or more ofthese books, reading them not only as a primer on the end oflife, but in addition looking for tips on how to lead our ownlives now as fully and filled with joy as we permit them to be.

What We Can Learn from Books on Death and DyingBy Grant P. Thompson



Pain and Willis-Ekbom Disease/Restless LegsSyndrome

A Guide to Help You Control and Manage Your WED/RLS

The following was written by William G. Ondo, MD, a professor ofneurology at The University of Health Science Center at Houston, anddirector of the WED/RLS Quality Care Center in Houston. Dr. Ondohas authored more than 200 original articles, review articles, and bookchapters, and has edited two textbooks on movement disorders. Hiscurrent research interests include Parkinson’s disease, Willis-Ekbomdisease/restless legs syndrome, tremor, and the use of botulinum toxins.

Pain is broadly defined as any unpleasant sensation with a negativeaffective component. The symptoms of Willis-Ekbom disease(restless legs syndrome, or WED/RLS) meet the criteria. However,the majority of patients specifically state that the sensation is not“painful,” though certainly unpleasant. Traditional pain symptomsprobably occur in about 20 percent of WED/RLS patients, although80 percent may report some pain.1,2 This mostly depends onsemantics and how pain is defined. The commonly used McGill PainQuestionnaire correlates with questionnaires about WED/RLS ingeneral, but the adjectives most commonly endorsed in the McGillPain Questionnaire (annoying, nagging, tingling, etc.) are not veryspecific for pain.3 Furthermore, visual analogue pain scales – wherepeople draw a line on a scale between zero and 10 – do not correlatewith WED/RLS scales in studies.

When is WED/RLS painful?There are several different scenarios where patients may havetraditional pain with WED/RLS. First, pain may be seen specificallyas part of the urge-to-move sensory component. This is part of theprimary WED/RLS description. Second, patients may have pain andan urge to move that are two separate features. This occurs mostcommonly with concurrent neuropathy, which is any damage orimpairment of the nerves in the legs or feet. Patients with neuropathyare probably at increased risk for WED/RLS, but they may also havea burning, superficial pain in their feet (neuropathic pain). In myexperience, people usually will not distinguish between these twosymptoms – pain in the feet versus the urge to move the legs –unless very carefully questioned.

A third cause of pain may be the consequences of learned helplessness(knowing you are going to get the unpleasant symptoms andanticipating them) and sleep deprivation, which lowers pain threshold.

Finally, painful symptoms may be caused by chronic long-termtreatment with dopaminergics (that is, Mirapex or Requip), because achange in the quality of the symptoms to a more painful sensationmay be part of augmentation. This last cause is controversial becauseit is unknown whether WED/RLS may gradually evolve into paineven without dopaminergic treatment, or if pain is more noticedbecause the dopaminergics effectively treat the urge to move.Understanding pain with WED/RLS

Scientific studies have shown some similarities between WED/RLSand pain. It should be noted that neither condition is entirelyunderstood. Tests of pinprick to the feet pain ratings (statichyperalgesia) in WED/RLS patients were significantly elevated inthe lower limb, whereas sensation to light touch (allodynia) werenormal.4 In patients with chronic pain, both were abnormal. In thesubset of subjects whose WED/RLS was successfully treated withdopaminergics (which do not treat pain), the pinprick hyperalgesiatesting normalized. There is little data to suggest dopaminergicstreat pain in general. However, descending dopaminergic tracts inthe spinal cord are suggested to be involved in WED/RLS5 andmay also be involved with suppression of pain in general.6

In general, large treatment studies of WED/RLS withdopaminergics have not formally assessed pain. In my experience,dopaminergic medications dramatically improve the urge to movein WED/RLS, but do not consistently improve pain. Gabapentinenacarbil (Horizant) is a novel drug that is absorbed moreeffectively than its predecessor gabapentin (Neurontin). It worksdifferently than dopaminergics and is approved by the U.S. Foodand Drug Administration (FDA) for WED/RLS. In trials, visualanalogue pain scales specifically improve, and as opposed todopaminergics, this drug probably helps chronic pain in general.

Another similar drug, pregabalin (Lyrica), probably has a similareffect. Opioids (narcotics) are also used to treat both WED/RLSand pain. There are no formal trials to evaluate these drugs inpainful WED/RLS, but they probably help. Improved sleep mayalso help pain.

In my experience, people usually will not distinguishbetween these two symptoms – pain in the feet versusthe urge to move the legs – unless very carefullyquestioned.

SummaryIn my opinion, pain specialists often incorrectly treatWED/RLS. In most cases, there are major differences betweenWED/RLS management and pain management, and somemedications used to facilitate pain management can actuallyworsen WED/RLS. Local numbing injections and steroidshots are also ineffective for true WED/RLS. That said, ifa therapy is effective and felt to be safe for any individualpatient, there is no reason to change.


[email protected] | www.willis-ekbom.org | facebook.com/WillisEkbomDiseaseFoundation | twitter@WEDFoundation

William G. Ondo, MDProfessor of NeurologyThe University of Texas Health Science Center at Houston

Director, WED/RLS Quality Care Center

6410 Fannin Ste 1014Houston, TX 77030832-325-7080

References1 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 characteristicsand frequency of the hereditary restless legs syndrome in a population of 300patients.” Sleep 23 (5): 597–602.

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

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

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

6 Fleetwood-Walker SM, Hope PJ, Mitchell R. 1988. “Antinociceptive actions ofdescending dopaminergic tracts on cat and rat dorsal horn somatosensoryneurones.” 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 childrenwho live with this often devastating disease. Our mission is to increaseawareness, improve treatments and through research, find a cure forWillis-Ekbom disease.

© 2015 Willis-Ekbom Disease Foundation. All rights reserved.

Living with WED/RLS

Want to attend a support group meeting, but can’t find asupport group in your area? Interested in starting a supportgroup, but not sure how?

We have an opportunity for you! rough the WEDFoundation, you can volunteer to establish and lead a supportgroup for people in your community.

e role of a support group leader is to support theFoundation’s goals to increase awareness, improve treatmentsand, through research, find a cure for WED/RLS. Supportgroup leaders develop meetings and facilitate discussions toshare experiences among people who have WED/RLS, areaffected by WED/RLS, or otherwise have an interest in thedisease. Support group leaders work with the Foundation toprovide information about treatment, coping strategies, andways 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 thatthey provide support, increase awareness of WED/RLS in theircommunities and serve as resources for information. edifference is that contacts are not required to hold meetings, buthelp others one-to-one, whether in person, by phone or byemail.

When you volunteer as a support group leader or contact, theWED 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)

How do I get started?To get started, contact the Foundation to complete an applicationand provide personal references. Before approving your application,we will send a short questionnaire to these references and contactyou to set up a phone interview.

To learn more or request an application, please call the Foundationat 512-366-9109 or contact Mary at [email protected].

Become a Support Group Leader


WED/RLS Support Group NetworkAcross the United States and Canada, support groups bring people together to share their feelings about living with WED/RLS, discussways to communicate with their families, friends and healthcare providers, and learn about the latest treatments. The WED Foundationalso maintains a network of contacts. Contacts are individuals who have volunteered to offer support by phone or email to people intheir area who are looking for WED/RLS information, resources and support. They do not hold meetings, but they can assist you infinding 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 supportgroup leader in your area, please contact the WED Foundation at [email protected].

ARIZONAJane AndersonTucson, [email protected]

Charlene TravelsteadLake Havasu City, [email protected]

ARKANSASJohn Graves - ContactLittle Rock, [email protected]

Carol Mallard - ContactMidway, [email protected]

CALIFORNIASanjana BlackFremont, [email protected]

Wesley DoakSacramento, [email protected]

Carol Galloway - ContactSan Rafael, [email protected]

Caroline ChamalesSan Diego, CA [email protected]

Charmaigne MennRancho Mirage, [email protected]

Lola Scavo - ContactFullerton, [email protected]

Susan SchlichtingRedondo Beach, [email protected]

William SchrammSalinas, [email protected]

Kristen Weeks-NortonDavis, [email protected]

Daria WheelerSanta Cruz, [email protected]

COLORADORhondda GrantDenver, [email protected]

Kay HallHighlands Ranch, [email protected]

Llyn LankfordBoulder, [email protected]

DELAWAREBetsy Lacinski - ContactNewark, [email protected]

FLORIDARae LapidesGainesville, [email protected]

Mary Lou MennonaHobe Sound, [email protected]

Ed Murfin - ContactJacksonville, [email protected]

Louis Siegel - ContactLakewood Ranch, [email protected]

Margaret WaltersSarasota, [email protected]

Richard WilsonTallahassee, [email protected]

GEORGIALorne EbelNewnan, [email protected]

IDAHOLinda Secretan*Eagle, [email protected]

ILLINOISGail Sesock - ContactHerrin, [email protected]

INDIANALinda KlugBloomington, [email protected]

Diane WeissenbergerIndianapolis, [email protected]

IOWAThelma Bradt - ContactWest Des Moines, [email protected]

Delila Roberts - ContactHuxley, [email protected]

Elaine Tucker - ContactStory City, [email protected]

KANSASJohn LaFeverWichita, [email protected]

Nora Walter - ContactLenexa, [email protected]

KENTUCKYKen McKenneyBowling Green, [email protected]

John White - ContactLebanon Junction, [email protected]

MAINESally Breen - ContactWindham, [email protected]

Régis LangelierOcean Park, [email protected]

MASSACHUSETTSSheila Connolly - ContactHyannis, [email protected]

MISSOURIRoseanna LeachOronogo, [email protected]

Kathy PageSmithton, [email protected]

NEBRASKALinda Sieh - ContactNaper, [email protected]

NEVADAFlora WoratschekHenderson, [email protected]

NEW HAMPSHIRERoberta KittredgeHampton, [email protected]

Gail Richens - ContactHanover, [email protected]

NEW JERSEYElda CostiganEdison, [email protected]

Dot QuillCape May Court House, [email protected]

United States

* Member of WED Foundation Board of Directors


WED/RLS Support Group Network

InternationalThe following independent groupswork in cooperation with the WEDFoundation.

AUSTRALIARestless Legs Syndrome Australiawww.rls.org.au

AUSTRIADachverband der österreichischenSelbsthilfegruppenwww.restless-legs.at

BELGIUMAssociation Belge du Syndromedes Jambes sans Repos (Absjr)www.absjr.be

DENMARKRestless Legs PortalenRestless Legs -Patientforeningen

FINLANDLevottomat jalat RLSry (Finland)www.uniliitto.fi

FRANCEA.F.S.J.R, Association Française desPersonnes Affectées par le Syndromede Jambes sans Reposwww.afsjr.fr

GERMANYDeutsche Restless Legs Vereinigungwww.restless-legs.org

[email protected]

JAPANOsaka Sleep Health Networkwww.oshnet-jp.org

THE NETHERLANDSStichting Restless Legs Nederlandwww.stichting-restlesss-legs.org

NEW ZEALANDBrain Researchwww.neurological.org.nz

NORWAYForeningen rastlöse beinwww.rastlos.org

SPAINAespi, Asociacion Espanola de sin-drome de piernas inquietas Madridwww.aespi.net

SWEDENWED-Förbundetwww.rlsforbundet.se

SWITZERLANDRestless Legs Schweizwww.restless-legs.ch

UNITED KINGDOMRestless Legs Syndrome UKwww.rlsuk-esa.org.uk

NEW YORKMichael Haltman - ContactWoodbury, [email protected]

OHIOJan SchneiderBeavercreek, [email protected]

OREGONValerie Boggs - ContactRoseburg, [email protected]

M. Lynn McCracken - ContactRoseburg, [email protected]

Yvaughn TompkinsEugene, [email protected]

PENNSYLVANIAKaren WalbornCarlisle, PA 717-486-3788 [email protected]

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Ask the DoctorThe WED Foundation is unable to respond to individual medicalor treatment-based questions due to liability issues. Your personalhealthcare provider knows you best, so please contact him/her withspecific questions related to the ongoing management of your WED/RLS.

We welcome your general-interest medical questions. Selectquestions on areas of common interest will be published in a futureissue of NightWalkers. The Foundation will edit questions asneeded and keep them anonymous in the newsletter.

Q: I have just returned home following a massive debulkingoperation for peritoneal/ovarian cancer. At the time of mydiagnosis with cancer, my ferritin was 153 micrograms /L.When I first determined that I had WED/RLS, my ferritinwas eight and had never gone higher than 50. My doctor doesnot agree that it should be higher. I am told that ferritin canrise if related to inflammation from cancer.

I had my WED/RLS under control with two 5/325 milligramtablets of hydrocodone, but now that is not working. MyWED/RLS is significantly worse to the point of beingunbearable. It also starts earlier in the afternoon and preventsme from resting if I lie down. I do not want to go ondopamine agonists because my mother suffered greatly fromaugmentation and other side effects. I am holding offsleeping during the day with the hope that my sleep-wakecycle will regulate again. I am also not treating the painduring the day so that I can increase my dose during thenight. Do you have any recommendations for how to dealwith the markedly increased WED/RLS?

A: In the setting of inflammation, the serum ferritin level can indeedrise, and therefore an apparently normal serum ferritin level maynot be an accurate marker of iron stores in the body. In thissetting it is important to also measure the serum ironconcentration and the percentage saturation, as these measuresare more likely to indicate iron deficiency if it is present. If ironstores are low after surgery in someone whose WED/RLSsymptoms have dramatically worsened and become intolerable,some physicians would consider an intravenous iron infusion torapidly correct iron deficiency.Michael H. Silber, MB, ChB

A: It is not uncommon to have exacerbation of WED/RLS in suchsituations. You can try other medications such as gabapentinenacarbil (Horizant), pregabalin (Lyrica) or gabapentin.Some of the recent reports have shown very good results withpregabalin. It may also help pain in addition to the feeling ofrestlessness. Abdul Qayyum Rana, MD, FRCPC

A: Your case is fairly complex, as your WED/RLS is worsening andcomplicated by your problems with cancer. You may requirecombination therapy, which may include an opioid, anti-seizuredrug (Horizant, Lyrica or gabapentin) and even a dopamineagonist. (You might consider Neupro, which is a long-actingdopamine agonist that has less of a tendency to cause

augmentation.) With the help of an experienced WED/RLSphysician, you should have a very good chance of relieving yourWED/RLS symptoms.Mark J. Buchfuhrer, MD

Q: I have basic tremor, as the doctors call the cause of my poorcoordination, now worsening as I age. Is this related to myWED/RLS, and where can I find more information?

A: It is not uncommon to have exacerbation of WED/RLS in suchsituations. You can try other medications such as pregabalin or gabapentin. Some of the recent reports have shown very goodresults with pregabalin. It may also help pain in addition to thefeeling of restlessness. Abdul Qayyum Rana, MD, FRCPC

A: It is most likely that your tremor is not related to yourWED/RLS and that it is just a coincidence that you have twofairly common medical conditions. There are no studies on thistopic, so there are no further sources of information.Mark J Buchfuhrer, MD

Q: I wonder if there is any correlation between attention deficithyperactivity disorder (ADHD) and WED/RLS. Have anyWED/RLS patients gotten better after taking Ritalin?

A: There have been several reports of association of ADHD andWED/RLS in various forms. Some reports have suggested thatparents of children with ADHD may have increased prevalence ofWED/RLS. There is currently no consensus about the use ofRitalin in WED/RLS.Abdul Qayyum Rana, MD, FRCPC

A: For both children and adults, ADD/ADHD is more commonlyfound with WED/RLS than in the general population. It is notclearly understood why these occur together frequently. Yes,WED/RLS symptoms are typically better with stimulantmedication such as methylphenidate (Ritalin). While this may helpduring the day or early evening, stimulant medication is ill suited forbeneficial effect in the late evening or overnight, due to the alertingeffect impacting sleep. Of course, while stimulant medications areapproved for ADD/ADHD and narcolepsy, they are controlledsubstances and can be prescribed for someone with WED/RLS onlyif one of those other conditions coexists.Daniel Picchietti, MD

Q: Is it possible that WED/RLS patients with normal ferritinlevels would benefit from iron supplements?

A: Blood ferritin levels are one of the more sensitive tests forevaluating iron stores in the body, but they may not always reflecthow much iron is in the brain. Although normal ferritin levels aredefined by most laboratories as above 10 or 20 micrograms/L,studies have demonstrated that WED/RLS patients may benefitfrom increasing their ferritin levels over 50–75 micrograms/L bytaking oral iron. There appears to be an even greater benefit from

continued on page 21



Bedtime Stories

Bedtime Stories are the opinions of the authors only and not of the WEDFoundation, its employees or its Board of Directors. Publication inNightWalkers does not imply endorsement by the WED Foundation.Therapies and results described in Bedtime Stories reflect the experiences ofindividuals and cannot be generalized to everyone with WED/RLS. It isimportant to talk to your healthcare provider and investigate concerns suchas safety, efficacy and cost before making any changes to your treatmentregimen. Stories may be altered for length or clarity.

To submit your story for publication, please send an email [email protected]. Thank you,“W.” for sharing your story inthis issue!

My exercise program:

Swimming: 1 mile, 3x/weekPilates: 3x/weekWalking: 2–3 miles, 3–4x/weekStretching: 2–3x/week

Hope this helps!– W.

intravenous iron therapy, but not everyone responds to this therapy. It is still not clear as to what ferritin levels may respondto intravenous iron therapy. Some patients with quite reasonableferritin levels (over 100 micrograms/L) have demonstrated aresponse to intravenous iron therapy in anecdotal cases (in myexperience).Mark J Buchfuhrer, MD

Q: I have sleep apnea. I have noticed during the day when I’mtired that my restless leg kicks in. Is there a connection? Also,when WED/RLS happens to me, if I start walking around, itsubsides faster than when I’m sitting down.

A: Yes, it has been noted by many patients, and corroborated byresearch, that WED/RLS symptoms tend to worsen when one istired. Birgit Högl, MD

A: It is typical for WED/RLS symptoms to act up when there isphysical and mental inactivity. Conversely, symptoms subsidewhen there is physical activity or mental stimulation. The moreintense the stimulation (e.g., walking, running or engaging invigorous discussion), the better the effect. Of course, this is whyWED/RLS symptoms are problematic when a person does quiet,relaxing activities or tries to fall asleep. Of note, it is veryimportant to treat sleep apnea effectively when there isWED/RLS. Untreated sleep apnea has an aggravating effect onWED/RLS symptoms. Daniel Picchietti, MD

Q: I’ve had WED/RLS most of my life. It has become muchmore severe in the past six months. I don’t take anymedications on a regular basis but have been able to control itat night with a variety of sleep aids (Ambien, Advil PM,Benadryl, Xanax). I’ve only taken them on an as-neededbasis, and usually just a few nights per week. That was untilrecently. The Advil PM and Benadryl seem to make myWED/RLS worse. And now, I feel the need to move my arms,legs and shoulders. It happens any time of the day if I amsitting or trying to relax.

Last night I had a particularly scary sensation. I was trying tosleep without any drugs. However, it felt like my entireinsides were vibrating. I finally got up and took 5 mg ofAmbien. It took a long time to have an effect. My doctorprescribed Requip, but I am reluctant to take it because of allthe listed side effects.

A: Advil PM and Benadryl both contain diphenhydramine, which isknown to worsen WED/RLS unless it puts you to sleep before youcan experience the increase in symptoms. Requip is a reasonabledrug but may cause augmentation when used long term. Anotherchoice of treatment (which is a different class of drug) to discusswith your doctor is Horizant. I have heard a few patients complainof a similar whole-body vibration sensation when their WED/RLSsymptoms are very severe and have spread to several body parts.Mark J. Buchfuhrer, MD

Ask the DoctorContinued from page 20


Clinical TrialsA clinical trial is a research study that uses volunteers to investigatespecific health questions. The WED Foundation does not conductclinical trials; however, as a service to our members we list clinical trialopportunities on our website and in NightWalkers. Below is a partiallist of WED/RLS clinical trials currently seeking volunteers. Pleasecontact the institution directly if you are interested in participating. Allstudies listed have received Institutional Review Board (IRB) approval,which allows us to ensure that they follow established protocols. Pleasenote: This is not a comprehensive list. To search for clinical trials inyour area, visit www.searchclinicaltrials.org or www.clinicaltrials.gov.

To learn more about clinical trials, download our Clinical Trials andResearch handout at www.willis-ekbom.org or request a paper copyusing the publication order sheet on page 23.

Have you been diagnosed with restless legs syndrome? Are youcurrently taking medication to treat restless legs syndrome(RLS)? Massachusetts General Hospital, Boston; and SpauldingRehabilitation Hospital, Cambridge; are seeking men andwomen ages 20 to 65 to participate in a research study lookingat the effects of restless legs syndrome on blood pressure. Toparticipate, you cannot have diabetes, have high blood pressure orsmoke. Participation will consist of three study visits for a total ofup to seven hours. You will receive up to $300 for your participa-tion. For more information and eligibility requirements, please callLaura at 617-643-6026 or email [email protected].

• • • • •

Would your friend or family member (not a blood relative, ifyou have WED/RLS) like to make a lasting contribution togroundbreaking research? A Johns Hopkins team is recruitinghealthy adult volunteers for a study on the role of glutamate inWED/RLS. In some cases, reimbursement may be availablefor time and travel expenses. To learn more, contact SherryNickerson at 410-550-1046 or [email protected].

NeuroTrials Research in Atlanta, Georgia, is conducting a localstudy to examine the safety and efficacy of a new investigationaldrug for Willis-Ekbom disease (restless legs syndrome). Study-related care and study drug are provided at no cost. Qualifiedparticipants will be compensated for time and travel. To qualify,participants must be 18 to 70 years of age, have a diagnosis ofWED/RLS for over six months, experience symptoms ofWED/RLS for at least 15 nights per month, and otherwise be ingood general health. If you are interested in learning more aboutthis study, or to find out if you qualify, call 404-851-9934 or visitwww.neurotrials.com.

• • • • •

If you live in the New York City area, you may be eligible toparticipate in a new research opportunity. We are conducting aresearch study to determine whether there are changes in theretinal structure of the eyes of individuals with Willis-Ekbomdisease (WED/RLS) compared to individuals with Parkinson’sdisease, individuals with multiple system atrophy, and healthycontrols. The study will take place at the New York UniversityLangone Medical Center and will require one visit, lastingapproximately one to two hours. The visit will include an initialscreening and an eye exam.

There is no direct benefit to you or expense reimbursementavailable from your participation in the study. It is hoped that theknowledge gained will be of benefit to others in the future. Studiesdone for this research study are not a part of your regular medicalcare and will not be included in your medical record. If interested,please contact Dr. Jose Martinez at [email protected].

e WED Foundation has received a donation of a one-bedroom timeshare unit located in St. Johann, Pongau, Austria. e unitis part of the Alpenland Sporthotel. Although the timeshare rights are good for any time of the year, this location is primarilydesirable 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. eFoundation has no way to make use of this facility, and wishes to sell it. Funds received in the sale will support the ongoing workof the Foundation.

If you have an interest in purchasing the timeshare or would like more information, please contact the WED Foundation [email protected].

For Sale – Timeshare Unit in Austria Ski Region

Publication Order SheetPublications 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 MayoClinic 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 ExerciseSuggested Coping Methods Depression and WED/RLSUnderstanding Augmentation Pain and WED/RLSElderly Population Clinical Trials and ResearchUnderstanding Possible “Mimics” Your Child with WED/RLSThe Role of Iron in WED/RLS A Quick Guide to Living with WED/RLSMedications for WED/RLS Understanding Drug ActionDrug Holidays and WED/RLS WED Foundation Research Grant ProgramSymptom Diary for WED/RLS Complementary/Alternative Medicine and WED/RLS

Your First Doctor Visit for WED/RLS Hospitalization Checklist

MEMBERSHIPYes, 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 programeducation where it is needed most

I would like to make a recurring monthly gift of $________ for research WED/RLS Quality Care Center programStart date: __________ End date: __________ education where it is needed mostI 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 orthe Willis-Ekbom Disease (WED) Foundation.

Please bill $______ to my American Express Discover MasterCard VISACard number________________________________________ Expiration date ___________________CONTACT INFORMATION (We do not sell or share our mailing list.)

Name ________________________________________ Address ______________________________________________

City ____________________________________________ State ____________________ Zip ______________________

Email address _____________________________________________ Phone number _____________________________


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