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NIGHTWALKERSIn search of a good night’s sleep

Spring 2014First InternationalWED/RLS QualityCare Centerpage 3

formerly known as the RLS Foundation

Karla DzienkowskiNamedExecutive Directorpage 4

Study LinksBTB9 Gene withWED/RLSpage 6

New Researchon Pregabalinand Pramipexolepage 7

Couples’Perspectives onLiving withWED/RLSpage 8

Garden Partiesfor a Causepage 12

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

Board of DirectorsJacquelyn Bainbridge, PharmD, ChairMichael Brownstein, MD, PhDRégis Langelier, PhD, TreasurerKathy PageLewis PhelpsMatthew A. PicchiettiJames Schaeffer, PhDRobert (Bob) H. Waterman, Jr.

Medical Advisory BoardMichael H. Silber, MB, ChB, ChairPhillip M. Becker, MDMark J. Buchfuhrer, MD, FRCP(C), FCCPChristopher J. Earley, MB, BCh, PhD, FRCPIDiego Garcia-Borreguero, MD, PhDJennifer G. Hensley, EdD, CNM, WHNPBirgit Högl, MDMauro Manconi, MD, PhDWilliam Ondo, MDDaniel Picchietti, MDAbdul Qayyum Rana, MD, FRCPCArthur S. Walters, MD

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

Executive DirectorKarla Dzienkowski

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 Foundation1530 Greenview Dr SW Suite 210Rochester, MN 55902

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

©2013 Willis-Ekbom Disease FoundationEditors: Karla 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

WED Foundation NewsResearch Fuels Our HopeThe beginning of another research grant cycle is always an excitingtime of the year for me as the mother of a daughter who hasWED/RLS. Our scientific research grant program at the Willis-Ekbom Disease Foundation gives me hope for the future. I amreassured knowing there are committed researchers who havededicated their life’s work to understanding WED/RLS. Theseresearchers spend countless hours in the lab looking for clues tounravel the WED/RLS mystery in the hope of finding new andbetter treatments that will improve the quality of life for thoseliving with the disease. They work not only in the lab, but also asdoctors who care for patients. Together, we have a common goal:to find a cure and put an end to this debilitating disease.

I have been fortunate to attend the Associated Professional SleepSocieties annual meeting, where scientists present their findings to others in the sleep field.Researchers are passionate about WED/RLS research and eager to share their knowledge with othersleep experts. In turn, this helps to further educate others in the sleep field about the prevalence ofWED/RLS and available treatments, and to demystify the disease as merely a nuisance condition.

Since the inception of the WED Foundation and just in the last decade, we have seen four FDA-approved medications for WED/RLS due to the commitment of researchers to find new and bettertreatments. As an organization that started with the aim of increasing awareness and improvingtreatments, the WED Foundation has accomplished a tremendous amount, but much work still liesahead as we continue to relentlessly pursue better therapies and ultimately, a cure.

This spring, the renowned experts on our Scientific Advisory Board are once again reviewing andscoring proposals from some of the best scientists in the field. This Board will pass on itsrecommendations for approval to our Board of Directors, whose members are deeply committed toserving the interests of WED/RLS patients and their families.

This work is all done on behalf of the millions of men, women and children who are living withWED/RLS and those who love them. We can all find inspiration in the words of ChristopherReeve: “Don’t give up. Don’t lose hope. Don’t sell out.” The Foundation’s work to support newscience continues to fuel hope in all of us.

Best Wishes,

Karla DzienkowskiExecutive DirectorWillis-Ekbom Disease Foundation

Karla DzienkowskiExecutive Director

www.willis-ekbom.org NIGHTWALKERS I 3

In March, the Foundation’s Board of Directors certified theInnsbruck Medical University Sleep Lab and Sleep DisordersOutpatient Clinic as a WED/RLS Quality Care Center. Locatedin Austria, the Innsbruck clinic is the first international centerin the Foundation’s Quality Care Center program.

“The Innsbruck Quality Care Center demonstrates thecommitment of healthcare providers on the international level tocollaborate and share research and innovative treatment practices toprovide the highest quality of care for those living with WED/RLS,”says Jacci Bainbridge, chair of the WED Foundation Boardof Directors.

Birgit Högl, MD, is director of the Sleep Lab and SleepDisorders Outpatient Clinic in Innsbruck. The Innsbruck clinicwill “improve education and promote sharing of best practices,thereby improving health care for the patient community. Thisprogram seeks to improve the quality and accessibility of carefor individuals with WED/RLS in the European community,”says Dr. Högl.

The WED Foundation launched the WED/RLS Quality CareCenter Program last year to improve diagnosis and treatmentfor people who have the disease.

WED/RLS Quality Care Centers are recognized as leaders inthe field, serve as liaisons to primary care providers and supportgroups, and are listed in Foundation materials so that patientsand providers can use their services. Certification is based oncriteria developed by the WED Foundation Medical AdvisoryBoard and requires a high level of expertise and experiencetreating WED/RLS patients.

Through education, sharing of best practices and quality improvementprojects, the program aims to help the WED/RLS communityovercome persistent barriers to effective diagnosis and treatment.

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

WED/RLS Quality Care Centers

The Johns Hopkins Center for Restless Legs Syndrome5501 Hopkins Bayview Circle • Baltimore, MD 21224

410-550-0574Contact: 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 55905

507-538-3270 (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 77030

832-325-7080 (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

WED Foundation Certifies First InternationalQuality Care Center

WED Foundation News


WED Foundation NewsKarla Dzienkowski Named Executive Director

Phelps and Schaeffer Join Board of DirectorsThe WED Foundation Board of Directors is pleased to welcome two new members, effective January 1, 2014.

The WED Foundation Board of Directorshas named Karla Dzienkowski as executivedirector, calling on her to strengthen theFoundation’s service to its members and tobroaden the financial impact of itsdevelopment program. Jacci Bainbridge,chair of the Board of Directors, says, “Weare absolutely delighted to have someonewith Karla’s talent and skills leading theWED Foundation at this time. The entire

Board values her experience in the medicaland nonprofit sectors and looks forward tothe work she will do in support of theFoundation’s mission to improve the lives ofpeople living with WED/RLS.”

Lew Phelps has rejoined the Board follow-ing previous service as a member from 1997to 1999 and as chair from 2000 to 2008.He is an experienced journalist, corporatepublic relations executive and crisis man-agement consultant. After a decade as a re-porter for the Wall Street Journal, he led thepublic relations departments of two majorrailroad companies and the nation’s largestelectric utility company. He operated hisown consulting business for four years andjoined Sitrick And Company in 1998. Heholds a B.A. in English writing fromPomona College in Claremont, California.

James Schaeffer, PhD, trained as a scientistat Northwestern University and BaylorCollege of Medicine, and has taught at theUniversity of California-Sand DiegoCollege of Medicine. He joined MerckResearch Laboratories in 1985, where he isnow executive director of WorldwideLicensing and External Research - WestCoast.

Welcome, Lew and Jim, and thank youfor your willingness to serve theWED/RLS community!


ResearchGrant Funding Shifts Toward Research thatDirectly Impacts Lives

Interested in funding research?Make an online donation to research

at www.willis-ekbom.org/donate-todayand choose “research” as your designation.

The WED Foundation is gearing up for another round of fundingawards to scientists working to develop better treatments and a curefor WED/RLS. Established in 1997, the WED FoundationResearch Grant Program has funded 38 research grants for a totalof $1.4 million.

This year, Foundation funding is shifting the program’s focus towardresearch that will directly impact the lives of people living withWED/RLS, in contrast to a past focus on more basic work. Withthe limited money that is available, the Foundation will concentrateon projects that are not targeted by larger, wealthier funding entitieslike the National Institutes of Health or the European Union.Instead, the Foundation’s funding priorities will give laboratoryscientists and clinical investigators an incentive to work onearly-stage development of novel diagnostic tools and therapies.

“The program’s shift will help move discoveries made in thelaboratory into therapies used in the clinic to treat patients,”says Karla Dzienkowski, executive director of the WEDFoundation.

This year’s funded projects must involve one or more ofthe following:

• An animal model of WED/RLS that has the biochemical • features and appearance of the disorder in humans. Such a • model would allow for testing drug candidates or • understanding the cause of (and potentially mitigate) • augmentation. • New ways to screen “libraries” of chemicals for compounds • that might be a starting point for drug development.• The willingness to use such screens to identify promising • compounds and then alter them chemically so that they enter • the brain readily and only need to be taken by mouth once or • twice a day to be active. Any new drug candidate will also have • to be shown to be safe and free from bothersome side effects. • Blood tests or imaging methods that will allow for • diagnosing WED/RLS and following the course of therapies • when they are offered.• Treatments that will improve symptoms other than • restlessness (e.g., mood problems or risk of cardiovascular • disease), since WED/RLS is a 24/7 disease that affects • multiple body systems.

The Foundation will ask applicants about their future researchplans, to guarantee that small grants will help “seed” viable projects.Preference will be given to established investigators who havesucceeded in obtaining funding from the National Institutes ofHealth or industrial collaborators in the past.

Since issuing the annual call for letters of intent last fall, theFoundation has received 10 research proposals, The Foundation’sScientific Advisory Board has invited seven applicants to submitfull proposals for consideration and will forward itsrecommendations to the Board of Directors for approval in June.Through this process, the Foundation hopes to select two proposalsfor funding of $35,000 each in the 2014 grant cycle, but will onlydo so if they meet the rigorous criteria listed above.

Watch for an announcement of grant awardees in the summer2014 issue of NightWalkers.


Research

Scientists at Emory University have made important progresstoward understanding the role of genetics in WED/RLS. In arecent study funded in part by the WED Foundation, a researchteam led by Subhabrata Sanyal, PhD, found the gene known asBTBD9 contributed to WED/RLS symptoms in the flyDrosophila. Researchers also observed the gene’s affect on ironmetabolism and the function of the dopaminergic system inDrosophila.

BTBD9 is among several genes that have been linked withWED/RLS in past research. In the recent study, scientistsremoved BTBD9 from flies and observed a subsequent increasein WED/RLS symptoms: motor restlessness and disturbedsleep. These symptoms improved when the flies were givenpramipexole (a dopamine agonist commonly used for treatingWED/RLS in humans). Using human tissue culture cells,scientists also observed an affect of BTBD9 on ironmobilization pathways in the brain.

_________________________

“Funding from the WED Foundation wascrucial in our efforts to generate a geneticmodel of WED/RLS in flies.”

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“The major significance of our study is to highlight the fact thatthere might be a genetic basis for WED/RLS,” says Dr. Sanyal.“Understanding the function of these genes also helps tounderstand and diagnose the disease and may offer morefocused therapeutic options that are currently limited to verygeneral approaches.”

Drosophila, commonly known as a “fruit fly,” is used as a geneticresearch model for a number of diseases because certain genes inDrosophila (such as BTBD9) closely match those of humans.Also, techniques to remove genes for genetic analysis are welldeveloped and rapid in the fly.

The new research findings set the stage for further explorationof the role of BTBD9 in WED/RLS, as well as for usingDrosophila as an animal model. “Once it becomes clear howexactly BTBD9 alters the functioning of dopaminergic neurons(these studies are currently underway in my laboratory atBiogen Idec), it might be possible to intervenepharmacologically and develop targeted WED/RLS treatments,”says Dr. Sanyal.

Support from the WED Foundation was crucial to the recentresearch, says Dr. Sanyal. “It is important to note that our workon WED/RLS has not been supported directly by the NationalInstitutes of Health, and therefore, the entire work would nothave been possible were it not for the support we received fromthe WED Foundation.” Grant funds were used to support atalented postdoctoral candidate, Dr. Amanda Freeman, whocarried out most of the work, as well as to fund other essentialactivities.

The study has been highlighted in Science Magazine andpublished in three peer-reviewed journals (see below).

For an overview of research supported by the WEDFoundation, please see the handout WED FoundationResearch Grant Program, available from the Foundation [email protected] or 507-287-6465, or by using theform on page 23.

Hurtley, Stella and Maria Cruz, eds. 2012. “Restless Flies, Fragmented Sleep.”Science, June 22, 1483.

Freeman AA, Syed S, Sanyal S. 2013. “Modeling the genetic basis for humansleep disorders in Drosophila.” Commun Integr Biol 6(1): e22733.doi:10.4161/cib.22733.

Freeman AA, Mandilaras K, Missirlis F, Sanyal S. 2013. “An emerging role forCullin-3 mediated ubiquitination in sleep and circadian rhythm: insights fromDrosophila.” Fly (Austin) 7(1): 39–43. doi:10.4161/fly.23506.

Freeman A, Pranski E, Miller RD, Radmard S, Bernhard D, Jinnah HA,Betarbet R, Rye DB, Sanyal S. 2012. “Sleep fragmentation and motorrestlessness in a Drosophila model of Restless Legs Syndrome.” Curr Biol22(12): 1142–48. doi:10.1016/j.cub.2012.04.027.

Scientists Link BTBD9 Gene with WED/RLSFoundation-funded study sets stage for further research

Help Support Research Toward a CureThe WED Foundation Research Grant Program is more important now than ever, as an increasing number of scientistsexperience difficulty finding the resources and support to conduct research like this study led by Dr. Sanyal.

Please consider helping move WED/RLS research forward by donating to our research grant program.Visit www.willis-ekbom.org or call 507-287-6465.

Research


New Research Finds Pregabalin as Effectiveas Pramipexole for WED/RLS

A large-scale research study published February 14 in the NewEngland Journal of Medicine shows that the drug pregabalin(Lyrica) controls WED/RLS symptoms as well as pramipexole(Mirapex), but with significantly lower incidence ofaugmentation. Augmentation is a worsening of symptoms withlong-term use, and occurs in about one-third of WED/RLSpatients who take the intermediate-acting dopamine drugspramipexole and ropinirole (Requip). Both pramipexole andropinirole are FDA approved for treating WED/RLS andcommonly used as first-line therapy.

“Over the long term, the most commonly used treatments forWED/RLS make a bad disease worse,” says Richard P. Allen,PhD, who is first author of the report. Allen is an associateprofessor in the Department of Neurology at Johns HopkinsUniversity and past chair of the WED Foundation MedicalAdvisory Board.

“This study is an important contribution to our knowledge ofthe treatment of a widespread and very serious medicalcondition,” said Karla Dzienkowski, executive director of theWED Foundation.

While previous studies found that one third of patients becameworse over three years of taking ropinirole and pramipexole, itwas unclear whether this was caused by the drugs themselves orby natural worsening of symptoms over time.

The new study used a head-to-head comparison of two drugs attheir usual doses for treating WED/RLS: pramipexole is a drugthat mimics dopamine in the brain and is FDA approved fortreating WED/RLS; pregabalin is a pain medication that isneither FDA approved for treating WED/RLS nor commonlyused to manage the condition.

In the study, 719 patients received standard doses of either 0.25or 0.5 mg pramipexole or 300 mg pregabalin. Both drugs werefound equally effective in initially relieving WED/RLSsymptoms, but after one year of treatment, pregabalin showedan equally effective improvement with less risk of augmentationthan 0.5 mg pramipexole.

Prior studies had found that pramipexole and ropinirole(another drug that acts on the dopamine receptors) provideeffective initial treatment followed by worsening of the disease.This often results in very severe – even painful – symptoms thatrequire a very difficult withdrawal from the medication. “Whatstarts as an evening or nighttime disorder expands to affect theafternoon and even the entire day of some WED/RLS patients,totally disrupting life and the ability to work efficiently,” saysAllen.

The new research found worsening of WED/RLS symptoms inonly 1–2% of patients taking pregabalin – consistent with therate of expected natural disease progression. In contrast, adramatically higher rate of worsening symptoms occurred withpramipexole at the 0.5 mg dose: 7–9%, mostly during thesecond half of the 12-month study.

The company producing pregabalin (sold as Lyrica) has notmade plans to seek FDA approval for treating WED/RLS. Thesimilar drug gabapentin enacarbil (sold as Horizant) wasapproved for treatment of WED/RLS in 2011.

Researchers from Pfizer, Massachusetts General Hospital inBoston, the Sleep Research Institute in Madrid, and TampereUniversity Hospital in Tampere, Finland, also contributed tothe study.


Living with WED/RLSLifestyle and Relationship Impact of WED/RLSA Closer Look at Patient Odyssey Survey Results

Like all chronic diseases, WED/RLS can have a profound impact onquality of life for friends and family members. This impact wasclearly demonstrated in last fall’s Patient Odyssey survey conductedby the WED Foundation in partnership with Xenoport, Inc.WED/RLS patients, spouses and partners reported experiencingsimilar disruption of sleep, mood, productivity and the ability toparticipate in social and leisure activities.

Key Relationship FindingsThe following pertain specifically to lifestyle, emotional andrelationship burden of WED/RLS. The full survey report isavailable at www.willis-ekbom.org.

Couple Profile• Fifty percent of spouses/partners reported being “extremely”• aware of their loved ones’ WED/RLS symptoms on a daily basis.• Although one-fifth (20%) of spouses/partners said that • WED/RLS has negatively impacted their relationships, almost • all (99%) reported that WED/RLS has never made them • consider ending the relationship.

Sleep and Relationships• Patients and spouses/partners both report a restful night’s sleep • as the area most affected by WED/RLS (85% and 38%, • respectively). • Sixty-five percent (65%) of patients and 24% of spouses/partners • report symptoms affecting their sleep three or more days per week. • About one-third (34%) of patients and 36% of spouses/partners • admit to sleeping in a separate bed due to WED/RLS.• As a result of sleep loss, 81% of patients and 33% of • spouses/partners report their productivity is at least• somewhat impacted. • Nine percent of patients and 12% of spouses/partners report • WED/RLS affecting their intimacy.

Social and Leisure Activities • Patients and spouses/partners report similar areas affected by • WED/RLS: mood and overall happiness (37% patient, 15% • partner), ability to travel (37%/25%), ability to participate in • • social events (24%/18%) and relationships (15%/20%).• Almost half (47%) of patients and about one-third (34%) of • spouses/partners say they avoid movies, the theater or concerts • as a result of WED/RLS.• Forty-three percent of patients and 36% of spouses/partners • report avoiding long car trips as a result of WED/RLS.• Thirty-four percent of patients and 22% of spouses/partners report • avoiding plane travel as a result of WED/RLS.

Couples’ Perspectives on Living with WED/RLSThe Patient Odyssey survey results demonstrate the profound impactWED/RLS can have on relationships. We asked three couples toshare their insights on how the disease affects their daily life andhow they cope with these challenges.

Couple 1

What challenges have you faced as a couple related toWED/RLS?

Spouse/partner: Probably the lack of sleep is the biggest challenge.When people don’t sleep well for long periods of time, it affectsevery other part of their lives. When you have to work after asleepless night, it is hard to function and concentrate. Then, bythe time she gets home, she is very tired and sometimes cranky.Even though I try to be sympathetic, I don’t really know what sheis going through.

Individual: As hard as he tries, he just can’t really understand whatI deal with. Yes, I do have trouble with work and I’m tired, andI’ll even admit to the crankiness! But it is more than just that. It’sthe feeling of anxiety – will I get to sleep tonight? How long?When will this end? Even though I know there are many, manyother people who suffer with this, during those late nightwanderings I feel totally alone.

How have you coped with or overcome these challenges?

Spouse/partner: We have lived with this for many years so I just know what to expect. We talk about new things that come up with this.

Individual: Communication. I go to sleep early, so if I get backup, he knows it is because of my legs.

What advice would you give other couples that arestruggling?

Spouse/partner: Know what the problems are with this. Talk about it and learn as much as you can. You may not completely understand it, but you know the basics.

Individual: I agree. The first thing you need to do is learn everythingabout this disease you can. Then talk to each other. While I am theone with this, he has to deal with it also. It is important toremember that the partner suffers too, just in a different way.


Living with WED/RLS

Couple 2


Spouse/partner: It is frustrating to see your loved one in painand discomfort and not be able to do anything to relievethe discomfort. Rubbing her legs, giving a massage, andbeing sensitive to her feelings just does not seem adequate.

Individual: It has affected our ability to enjoy activities thatwe always did together such as concerts, movies and longcar trips. It became increasingly difficult to remain in bedbefore medication, and that presented a challenge to bothof us, as we missed that closeness and intimacy.


Spouse/partner: I try to learn as much as I can about thedisease and medications. I make sure she has a doctor whounderstands WED/RLS, remind her to take her meds, andmake popcorn when needed.

Individual: I was afraid to try medication for WED/RLS,but I desperately needed help. After trying several differentmeds, Mirapex gave me the help I needed to live a morenormal life again. Now I sleep in our bed and enjoy thecloseness that we had always enjoyed.


Spouse/partner: It is so important to be patient andunderstand that WED/RLS is a disease that affects theentire family.

Individual: Communication. It is necessary to gather asmuch knowledge as possible by attending support groupmeetings or seminars and gathering information from theWED Foundation. I would be more open to tryingmedication sooner, knowing that sleep deprivation affectedmy quality of life in so many ways.

Couple 3


Spouse/partner: Sleeping with someone with WED/RLS isvery difficult. They can’t be still, so falling asleep is achallenge. They stay up late trying to fall asleep. They moveand kick constantly. You can’t get comfortable. When theyfinally fall asleep, they are still moving. You can’t get close.They tear up the bed and wake up cranky.

Individual: When it was hard to fall asleep for me, it wasalso very difficult for my husband to fall asleep. I wouldkick, toss and turn. Usually, I would end up getting out ofbed … wander the hallway… come back to bed. It’s verydisruptive! Also, it is impossible to snuggle or cuddle. I can’tsit and watch television. It is impossible to go to the moviesor the theater or to fly unless I sit on the aisle.


Spouse/partner: This has been a long road, and we have hadto make some difficult choices. One way we deal withsleeping is by sleeping in separate beds. Not a first choice,but it has helped with getting a good night’s sleep.

Individual: I deal with every situation as it occurs. I amlucky because I have learned some of my triggers and try toavoid them! I take a sleep medication at night, and thatdoes help, but it doesn’t always work. I avoid sugar. Iexercise. I try to keep my bladder empty, as that seems tomake a huge difference. I try not to get too tired, and whenI feel an episode coming on, I move and do everythingpossible to keep myself occupied.


Spouse/partner: Give them their space. Be patient. Try to understand that this is a real problem and let them dealwith an episode the way they have to deal with it. Let themsit on the aisle.

Individual: Work with a doctor. Pay attention to yourtriggers. Exercise! Eat a healthy diet. Do not self-medicatewith pills or alcohol. Don’t drink before bed. Keep thesheets loose and sleep in a cool bedroom.


Complementary Corner

In May 2006, the first Complementary Corner column waspublished in NightWalkers. Since then, we have presented a widevariety of complementary and alternative medicine (CAM)practices and products for our readers. We have discussedcontroversial topics as well as therapies that are well established.

Medical research is important to establishing the most beneficialuse of CAM therapies, so I decided to review the medicalliterature to see how much research has been conducted onCAM to specifically treat WED/RLS since the start of thiscolumn. (This review of the literature does not includepublications before 2006).

Since “complementary and alternative medicine” is such a broadtopic, I reviewed all of the manuscript titles on WED/RLS overthe last eight years with some sort of CAM in the title. Isearched several databases, which identified the following:Medline (1,718 articles), CINAHL (835 articles), and AltWatch(32 articles). In my search criteria, I included research articles(not limited to the United States) and review articles. I excludednon-research articles, those where the CAM intervention had tobe prescribed by a physician (like IV iron therapy), and thoseinvolving oral iron therapy (an indicated treatment forWED/RLS). I then went back and did a search on each of theCAM topics I had discovered with WED/RLS – for example,“acupuncture” and WED/RLS, specifically.

The purpose of my search wasto find any research articlesrelated to WED/RLS thatinvolved a complementary oralternative intervention. Iidentified only the 16 articleslisted below, compared withthousands on the generaltopic of WED/RLS.

While this list may not beall-inclusive, it reminds us thatwe are still very far behind inour research related to the useof CAM for persons withWED/RLS. Unfortunately,the science behind using CAM is lacking partly due to thedearth of funding for this research and shortage of researchersinvolved with CAM, not only for WED/RLS, but also forother diseases.

What can we all do to encourage CAM research for WED/RLS?We can educate ourselves and others about the benefits of CAMinterventions for sleep disorders like WED/RLS. We can lobbyour political leaders and our physicians for more CAM research.

This column, Complementary Corner, continues to keep thisissue on the forefront and engages our community tounderstand the impact of CAM in the treatment of WED/RLS.

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

CAM Research is Still Far Behind

The following 16 articles represent research conducted on CAMand WED/RLS since May 2006. Please note that this list is notall inclusive.

Chinese Medicine• Cui Y, Wang Y, Liu Z. 2008. “Acupuncture for restless legs

syndrome.” (Review). Cochrane Database of Systematic Reviews (4). • Wu YH, Sun CL, Wu D, Huang YY, Chi CM. 2008.

“Observation on therapeutic effect of acupuncture on restless legssyndrome.” (Chinese). Zhongguo Zhenjiu 28(1): 27–29.

• Meng XJ. 2012. “Acupuncture and moxibustion at Siguan pointsmainly for 28 cases of restless legs syndrome.” (Chinese).Zhongguo Zhenjiu 32(10): 911–12.

• Yan X, Wang WD, Walters AS, Wang Q, Liu YJ, Chu FY. 2012.“Traditional Chinese medicine herbal preparations in restless legssyndrome (RLS) treatment: a review and probable firstdescription of RLS in 1529.” (Review). Sleep Medicine Reviews16(6): 509–18.

Natural Products/Herbs/Supplements• Shecterle L, Kasubick R, St Cyr J. 2008. “D-ribose benefits

restless legs syndrome.” (Case report). Journal of Alternative &Complementary Medicine 14(9): 1165–66.

• Cuellar NG, Ratcliffe SJ. 2009. “Does valerian improve sleepinessand symptom severity in people with restless legs syndrome?”Alternative Therapies in Health & Medicine 15(2): 22–28.

• Whittom S, Dumont M, Petit D, Desautels A, Adam B, LavigneG, Montplaisir J. 2010. “Effects of melatonin and bright lightadministration on motor and sensory symptoms of RLS.” SleepMedicine 11(4): 351–55.

• Sagheb MM, Dormanesh B, Fallahzadeh MK, Akbari H, SohrabiNazari S, Heydari ST, Behzadi S. 2012. “Efficacy of vitamins C,E, and their combination for treatment of restless legs syndromein hemodialysis patients: a randomized, double-blind, placebo-controlled trial.” Sleep Medicine 13(5): 542–45.

Continued on page 11


We have received many inquiries and comments from readers inresponse to the article “Hospitalization and WED/RLS” in thewinter 2014 issue of NightWalkers. Hospital and clinic visits –both those that are planned and those that are unexpected – canbe very challenging for people who have WED/RLS.

ese challenges are not insurmountable, and the Foundation ishere to help. Several materials are available to help you preparefor your medical visit:

• Hospitalization checklist• WED/RLS and Surgery brochure• Medical alert card• WED/RLS Medical Bulletin (for providers)

From Our Readers: More on Hospitalization

• Pereira J, Pradella-Hallinan M, Alves R. 2013. “Saint John’s wort,an herbal inducer of the cytochrome P4503A4 isoform, mayalleviate symptoms of Willis-Ekbom’s disease.” Clinics (Sao Paulo,Brazil) 68(4): 469–74.

Body Manipulation• Russell M. 2007. “Massage therapy and restless legs syndrome.”Journal of Bodywork & Movement Therapies 11(2): 146–50.

• Innes KE, Selfe TK, Agarwal P, Williams K, Flack KL. 2013.“Efficacy of an eight-week yoga intervention on symptoms ofrestless legs syndrome (RLS): a pilot study.“ Journal of Alternative& Complementary Medicine 19(6): 527–35.

Energy Fields/Other• Kutukcu Y, Dogruer E, Yetkin S, Ozgen F, Vural O, Aydin H.

2006. “Evaluation of periodic leg movements and associatedtranscranial magnetic stimulation parameters in restless legssyndrome.“ Muscle & Nerve 33(1): 133–37.

• Eliasson AH, Lettieri CJ. 2007. “Sequential compression devicesfor treatment of restless legs syndrome.” (Review). Medicine86(6): 317–23.

• Nilsson SE. 2008. “Electromagnetic therapy in restless legssyndrome and nocturnal leg muscle cramps. Same effect ofpulsating electromagnetic fields and placebo.” (Swedish).Lakartidningen 105(32–33): 2167–70.

• Lettieri CJ, Eliasson AH. 2009. “Pneumatic compression devicesare an effective therapy for restless legs syndrome: a prospective,randomized, double-blinded, sham-controlled trial.“ Chest135(1): 74–80.

• Mitchell UH. 2010. “Use of near-infrared light to reducesymptoms associated with restless legs syndrome in a woman: acase report.” J Med Case Rep 23(4): 286.

Continued from page 10

To order these materials, use the publications order form on page 23 or call 507-287-6465.

Living with WED/RLS

For several years, Donna Payne of Westerose, Alberta, has founda creative, meaningful way to honor her son, Trevor, who hassevere WED/RLS. (See “Trevor’s story” on previous page.)Rather than making a direct donation to the RLS Foundationin Canada (the Canadian arm of the WED Foundation),Donna raises both awareness and funds for the Foundation byhosting garden party fundraisers.

“I hoped that by doing some fundraising, [my son] might getsome relief through the success of the research being done. Andresearch costs money,” she said.

In 2008, Donna held the first garden party in her yard on abeautiful acreage in rural Alberta. She hosted 40 guests with aluncheon of homemade sandwiches and desserts, strolls in thegarden, a short talk about WED/RLS, and musicalentertainment. During this first party, she raised $2,000 indonations to the Foundation.

Fast forward four years, and Donna has raised nearly $11,000through biannual garden parties. One of her guests was SharonWill, manager of the local Alberta Treasury Branch (ATB) bank.Thanks to Will’s awareness of the cause, the bank donated anadditional $500 to the Foundation in 2013.

“I was so grateful that not only have the garden parties raisedfunds for WED/RLS, but they have created awareness in ourcommunity,” says Donna. Her guests often tell her they nowrecognize symptoms in a loved one as possibly related toWED/RLS. One guest made a substantial donation during theparty, and after contemplating the need, returned the next dayto increase her gift five-fold.

Each garden party includes a talk on a topic related to thedisease. In 2012, the guest speaker was Dr. Ronna Jevne, apsychologist and author of several books dealing with hopeand coping.

The parties also incorporate fun themes like “English tea party”and “Hawaiian.” This year’s gathering will feature butterflies, andDonna is creating garden beds for plants that will attract “the realthing.” Each guest will receive a small gift of a butterfly in someyet-to-be-created form by Donna and the close friends and familymembers who help with preparations behind the scenes.

The event is expanding beyond the bounds of Donna’s yard. Thisyear a local business will collect donations during June and Julyfor a chance to win a bistro set. And a local artist has donated apainting that will be auctioned off on garden party day.

“We do this garden party because we know that women in ourarea love to come out, love to get together and are veryresponsive to fundraising. They realize that they’re important inthe community,” says Donna.

“I would like to encourage the WED/RLS community to dowhat they can to raise funds. I found my garden parties to befun and inspiring. It’s a great way to be involved in yourcommunity and raise awareness of WED/RLS.”

For Trevor’s story, see page 13.

Living with WED/RLSGarden Parties for a CauseDonna Payne raises awareness and funds for the Foundation

Do you have a loved one with WED/RLS? Or are you wishingto make a meaningful gift in a friend or family member’s name?Consider a gift to the WED Foundation in honor or memory ofthat important person in your life.

Simply complete the form on the self-addressed envelopeenclosed in this newsletter and send it with your check to theWED Foundation. Your gift will be recognized through a lettersent to the person you are honoring, or the family of the loved

one you are memorializing. If desired, the individual’s name willalso be listed in NightWalkers in appreciation for your gift.

If you wish, you may also enclose a brief story or picture of thehonored individual to possibly be shared with the WED/RLScommunity through NightWalkers and other Foundationcommunications.

Thank you for your support!

Memorial Gifts and Tributes: Another Way to Give


Living with WED/RLS

The following is an excerpt from an article about Trevor Paynewritten by Linda M. Steinke in the August 11, 2012, issue of thePipestone Flyer. Trevor is the son of Donna Payne. (See “GardenParties for a Cause” on page 12).

Trevor Payne has known [this] illness for most of his life. But hehas managed to adapt and finds hope in the form of music. Forthe past 25 years, he has been playing guitar and now appearswith Bob Kochan in Blackpool doing mostly original folk rootsmusic. … This is quite a contrast to his early years of sufferingwith severe RLS.

Trevor spoke with Pipestone Flyer about his childhood – hisschool years in particular. As we sat, Trevor would jiggle his legsor squat – two things that relieve the inactivity-stimulated,electric prickly sensations in his legs. Curiously, Trevor says healso finds physical relief in reading technical manuals –anything that requires greater mental concentration.

Trevor’s RLS was misdiagnosed for many years due to anoverlapping muscular illness – Thompson’s Disease (TD). TD ischaracterized by prolonged contraction of the muscles whenevervoluntary motion is attempted, contraction and relaxation isslow and muscles stiff.

Being forced to run track or play baseball and then being forcedto sit during classes was physical torture – a double whammy! Ifonly he had been allowed to stand or pace, he could havelearned better. His report cards shout the glib reprimandingwords, “Just apply yourself.” One can only imagine howdifficult it was to learn while enduring extremely distractingsensations.

Trevor, like many other RLS sufferers, found a way around thislearning obstacle by studying very hard at home where he couldpace as he studied and as a result, he did well on tests.

For years, despite Trevor’s insistence that something else waswrong, neurologists returned to the Thompson’s Diseasediagnosis only. Fortunately, Dr. Helen Hayes, a Palliative CarePain Specialist, now retired, diagnosed Trevor’s RLS. Trevor wasplaced on specific medications to relieve symptoms – includingmeds used in the treatment of Parkinson’s, opiates, and anti-anxiety meds. They helped a lot! Trevor is proof that, whilethere is no cure for RLS, there is symptom relief.

During what Trevor describes as a crisis, he met Dr. Jevne, whofurther helped him through the practice of Buddhism. Thanks

to the hope Dr. Jevne has offered, Trevor says he is now able tofunction much better.Trevor would like us to be aware of four things:

First, believe that RLS as a real condition. RLS is not in yourhead.

Also, to realize that people with RLS have limitations – they areoften exhausted from lack of sleep because the nighttimeinactivity brings on the sleep-disturbing sensations. Long flightsor car trips … even sitting through a movie can be toodistressing.

Don’t give up on friends with RLS – Trevor has lost friendsbecause he was unable to go places and do certain things withfriends.

Finally, money is needed for research.

Reprinted with permission from the Pipestone Flyer.

Trevor’s Story


Education

Could a free webinar help with your next doctor’s visit? Attendeesof a recent WED Foundation’s webinar think so! In a follow-upsurvey, 93 percent of respondents who attended the webinar“What is WED/RLS & Do I Have It?” said they felt theirparticipation would help them with their next doctor’s visit.

One of the Foundation’s many learning venues, webinars areweb-based seminars given by experts in the field. A key featureof these meetings is their interactive nature – participants cantype in their questions at the end of the presentation. Questionsare read by a facilitator and answered by the presenter, muchlike a live seminar.

Foundation webinars are free and easy to join – you only need acomputer, tablet or smartphone with speakers (a headset willalso work) and Internet access:

1. Watch for announcements of upcoming webinars in the Foundation’s monthly e-newsletter (Efriends), on Facebook or on www.willis-ekbom.org. To sign up for Efriends, contact [email protected].

2. If you see a webinar you would like to attend, register in advance by following the instructions provided in the announcement.

3. You will receive an email message confirming your registration and outlining the steps for joining the webinar, including system requirements and instructions on how to install free software if you are attending for the first time.

4. On webinar day, join the webinar at the scheduled time –be sure to make note of the time of day for your time zone.

5. Sit back, relax and enjoy the opportunity to learn more about managing WED/RLS.

Webinars available for playback

Can’t make a scheduled webinar? Those who register for thewebinar will receive a link to a recording after the presentation.These recordings are available for playback as a WED Foundationmember benefit. Simply log in on www.willis-ekbom.org andclick the “Members Only” tab.

If you are not a Foundation member, this is the perfect time tojoin! For just $30 per year in the U.S. or Canada ($40international), you will enjoy a host of member benefits,including a subscription to NightWalkers. Scholarships areavailable. Contact us at 507-287-6465 or [email protected].

Webinars available for playback:

“What is WED/RLS & Do I Have It?”with Mark Buchfuhrer, MD, FRCP(C), FCCP

“What is a Treatment Algorithm?”with Philip M. Becker, MD

“Pain and WED/RLS”with William G. Ondo, MD

Webinars: Your Opportunity for Learning


Preview of Upcoming Webinars The following webinars are planned for 2014. Scheduling and registration information will be announced in theFoundation’s monthly email newsletter (eFriends), on Facebook and on www.willis-ekbom.org. To sign up for eFriends,contact [email protected].

May 20 • Children & WED/RLS • Presenter: Daniel Picchietti, MD

July • Patient Odyssey/Relationships & WED/RLS • Presenter: William Ondo, MD

October 7 • Drug Action • Presenter: Jacquelyn Bainbridge, PharmD, FCCP

Fall 2014 • Surgery & Hospitalization for WED/RLS Patients • Presenter: Christopher J. Earley, MB, BCh, PhD, FRCPI


In this issue of NightWalkers, you will find an envelope. This envelope represents a greatopportunity to honor someone in your life or make a gift in memory of someone special withWED/RLS who has passed away. With this donation, you can let others know about theimportant people in your life. You can tell someone just how much their presence in yourlife means.

This year, we are asking that you share something about the person you are honoring; tell aboutmemories and even include a photo if you like. There are people around us who make life easier,more enjoyable. They do their best to understand us and support us, and they do it because theycare. There are those whose memory makes us smile, whom we miss every day and who added somuch to our lives.

WED/RLS has a face. This face looks like you and me. It looks like all of us who suffer with thisdisease. But this face also looks like the ones who make life bearable. It is the face of a doctor whoworks hard to understand and help us feel better. It is the face of a support group leader, a staffmember at the Foundation or a member of the Foundation’s Board of Directors who goes out ofhis or her way to provide support. It is the face of a new friend on Facebook or an old friend thathas always been there. It is the face of those whose memory is always with us.

The stories and photos you send with your donation may be shared in an issue of NightWalkersand through a special post on the WED Foundation blog at [email protected]. We want torecognize those who have made a difference in your WED/RLS journey and those you miss whofought their battle with WED/RLS.

Your donation makes a difference. Your gift will help fund research to find a cure, educationalevents to help patients understand the condition, new materials to update doctors on treatments,support to help volunteers hold meetings, and so much more.

Please take a moment to recognize someone in a way that will have meaning and benefit to youboth, by filling out the enclosed envelope and returning it before June 30, 2014.

You may send a brief paragraph about the person you are recognizing and a photo. (Please notethat photos shared will not be returned unless you supply a postage-paid return envelope.) Youmay also send your story and photo to [email protected].

Remember that your donation will make a difference, a real difference, in the lives of everyoneliving with WED/RLS.

Sincerely,

Kathy Page2014 Development Committee Chair

From the Development Chair

Honor RollThe Willis-Ekbom Disease(WED) Foundation is sincerelygrateful for the donations we havereceived in memory and in honorof the following individuals:

TributesKarla DzienkowskiTrudy GorbskyLila Johnson

MemorialsMargaret Atherleyomas DavisBud DillihuntMayme EmbertonNorma GayAudrey Swanson

January 28 – April 6, 2014

Kathy Page2014 Development Committee Chair

Sitting Room Only

Living with WED/RLS

Let me begin by saying, I love to travel.

Last year, my husband, our then-13-year-old granddaughter andI were fortunate enough to realize a dream: a trip to SouthAfrica! Safaris and scenery unlike anything we had everexperienced; friendly fellow travellers; personable, informativetour guides; awesome photo opportunities and a foreigncurrency system – these are just a few of the things we willremember forever. Add to that, time spent together andwatching our granddaughter’s eyes opened to the wonders of theworld beyond our hometown, and you have a glimpse into atrip of a lifetime.

Oh, I must add one more experience I personally will neverforget: 17 hours on an airplane!

Knowing it would be a long flight (I should mention that evena two-hour flight drives my WED/RLS symptoms intooverdrive), I was prepared with extra doses of the medsprescribed by my doctor. I brought word search and puzzlebooks, my new iPad, books to read, pens and paper, a journal,small bags of treats that I knew wouldn’t set off the jumpylegs, info booklets about our destination, etc. Amazingly, mycarry-on bag was not overweight!

I’d like to say the flight was a breeze, but it was not. I believedthat I had carefully prepared myself by packing those extrameds, distraction foods and mental exercise activities to carrywith me on the plane. However, I was not ready for the realityof being on a lengthy, overnight journey in confined quarterswith hundreds of strangers or sitting in a middle-of-the-row seatin which the in-flight movie/audio entertainment station didnot work. The flight attendant even reprogrammed it fourtimes! It was the stuff from which WED/RLS nightmares aremade.

Midway through our fantasy vacation, I began dreading theflight home – not enough to ruin the trip, but enough to giveme pause.

Deciding I would try a “mind over matter” approach on the wayhome, I relaxed and enjoyed the rest of our time in South Africa.You see, I had a plan. I was once again prepared to manage theflight home. I tried not to think about the fact that I had alsobelieved I was prepared for the first voyage across the ocean.

I am happy to report that the return passage was much morepleasant than I had anticipated. Two things helped: my in-flightmovie/audio entertainment station functioned properly and Iwas able to sit in an aisle seat!

I am short and do not need the legroom. However, by beingable to stretch or walk around as needed without having tocrawl over one or more passengers, and by having enough roomto allow my jumpy legs to dance if they felt the urge (and theydid), I was a happy camper…and so was my spouse!

Lesson learned: While it is not possible to anticipate everyunimaginable trigger, it is practical to plan from experience. Ican never be overprepared when it comes to outfitting myWED/RLS self!

Alice J. Maxin is an author and certified life coach who serves as aWED Foundation support contact in Leechburg, Pennsylvania.

In the Air with WED/RLSby Alice J. Maxin



Support Group SpotlightStep Up to the Plate!Mary Lou Mennona - Florida Support Group Leader

Every week, an ad runs in the Stuart News: “RLS/WED SupportGroup information – Call Mary Lou.” e following day, MaryLou Mennona receives half a dozen calls. “Nine out of ten peoplewho call are 70 and over, don’t have a computer, and are sufferingso much with all kinds of illnesses due to lack of sleep,” she says.

Mary Lou listens to each person’s story and offers whateverinformation she feels will help: Have your iron checked. Don’ttake Benadryl – it makes you want to jump out the window. Tryavoiding sugar, caffeine and alcohol. When in doubt, ask yourdoctor. “ey always say, ‘You’ve helped me so much.’ People findcomfort and encouragement. I help them understand that they’renot alone.”

She also tells them about the WED Foundation and offers tomail them a copy of the Foundation’s Causes, Diagnosis andTreatment brochure. “When I finish telling them about theFoundation and research, and everything we’re doing for them,they start to cry. ey are encouraged.”

Mary Lou has been a WED Foundation support group leader for10 years in the Treasure Coast area of Florida (Hobe Sound,Stuart, and Port St. Lucie). She is busy with volunteering in anursing home, soup kitchen, and church; and editing acommunity newsletter. Yet she also finds time to volunteer for theWED Foundation by providing what she calls “phone ministry,”which she finds more convenient and beneficial than large-groupmeetings. Many of the people she helps don’t like to drive tomeetings and can learn more in a one-to-one conversation.

Mary Lou’s mother was diagnosed with WED/RLS in hereighties, after decades of experiencing “pinchy legs” and varioustreatments prescribed by doctors who were ignorant of thedisease. Mary Lou first noticed her own symptoms about 30 yearsago. “It’s like torture: your nerves don’t want your body to everrest. People who don’t have it don’t realize how very degeneratingit is.”

e word has to get out there more, says Mary Lou. Shefrequently receives calls from people who have symptoms ofWED/RLS but have not yet put a name to their symptoms. Sheencourages others to consider volunteering for the WED/RLScommunity. “Step up to the plate! A lot of people need help! Youwill get a lot of satisfaction from helping people who think they’reall alone and don’t understand what is wrong with them.”

For support group leaders – currentand future – Mary Lou has a few tips:

• Send announcements to • newspapers and radio stations, • which will often run them free of • charge as a public service. • Read and study everything you • can about the disease, and pass • on information along to others. • Read every copy of • NightWalkers and the materials • the Foundation gives you. • If time is an issue, consider phone • support. People can call • you and leave a message, and you can answer at your leisure • rather than having to book a meeting room and arrange for • refreshments.

Her final word: “Support group leaders should encourage peoplewho have this disease to become WED Foundation members, getthe NightWalkers newsletter and donate to the WED Foundation.at’s imperative.”

Mary Lou Mennona

Ask the Doctore WED Foundation welcomes general interest medicalquestions, which may be submitted to [email protected] published in Ask the Doctor may be edited forclarity and length. e WED Foundation is unable torespond to individual medical or treatment-based questions.Please contact your personal healthcare provider with specificquestions related to the ongoing management of yourWED/RLS.

Q: I have multiple sclerosis (MS) and am currently onNeurontin for my legs. I was wondering if you knew of anyother meds that help? My neurologist told me nothing willbecause I have MS.

A: Being affected by MS doesn’t prevent a specific treatment forWED/RLS. e drugs used in primary WED/RLS should alsowork even in patients with MS. Of course we need to take intoaccount other possible concomitant treatment for MS and checkif there are any possible drug interactions. So I think that thepatient can consider all the other possible therapeutic options forprimary WED/RLS. Mauro Manconi, MD, PhD

Q: At what age do we generally begin treating WED/RLS? Asmy daughter gets older (she is currently 12), I am seeing a lotof symptoms in her.

A: is is still an unresolved issue. We are now seeing more youngpatients than in the past, maybe because of increased awarenessof WED/RLS. ere is no clear consensus on the age to starttreatment. I would carefully consider the differential diagnosis,check for ferritin and consider a possible treatment dependingon frequency of symptoms, severity of symptoms and overallimpact on quality of life, sleep and school performance. If thereis a clear indication from this, I would start with treatment,maybe considering that dopamine agonists over the long termmight provoke augmentation.Mauro Manconi, MD, PhD

Q: Could trazodone be making my WED/RLS kick in? I haveisolated my symptoms to when I take the trazodone before Igo to sleep.

A: To the best of my knowledge, trazodone should not worsensymptoms; it might help improve sleep in WED/RLS patients.However, there are alternative medications to treat insomnia ordepression in WED/RLS (bupropion and clonazepam) that youmight try under the care of your doctor. Mauro Manconi, MD, PhD

Q: I have varicose veins and also WED/RLS. Are they related? IfI have my varicose veins treated, will this help myWED/RLS?

A: e relationship between WED/RLS and varicose veins is anold and much-discussed topic. At the moment we have no clearreason to state that there is a causal link. Based on myexperience, surgery on varicose veins doesn’t help in WED/RLS.Mauro Manconi, MD, PhD

Q: I have been taking Mirapex for thirty years, twice a day. Itwas working very well until two weeks ago, when I beganexperiencing WED/RLS symptoms again. I am going to seemy doctor but would also like to know if you have anysuggestions.

A: First, you have to rule out any other possible coexisting cause ofthe worsening: interaction with other drugs, side effects causedby other drugs, ferritin level, problems of absorbtion (gastro-enteritis), recent anesthesia, renal function problems, and so on.Augmentation should also be considered. Mauro Manconi, MD, PhD

Q: Are there drugs used during chemotherapy, like antinauseadrugs, that should be avoided by people who haveWED/RLS?

A: Antidopaminergic drugs usually worsen WED/RLS symptoms. Mauro Manconi, MD, PhD

A: Drugs that block the dopamine receptors (likeReglan/metoclopramide) and older antinausea drugs (likeAnitvert, Atarax, Benadryl, Bonine, Compazine, Phenergan,orazine, Tigan, Trilafon and Vistaril) should be avoided, asthey worsen WED/RLS. e newer antinausea drugs (whichhave been made for chemotherapy) include Zofran and Kytriland do not affect WED/RLS. Mark Buchfuhrer, MD, FRCP(C), FCCP

Q: What medications related to pregnancy can makeWED/RLS symptoms worse?

A: e most frequent medications (supplements) used inpregnancy are iron and folate, both of which do not worsenWED/RLS, but usually help. I would say that all the drugsinducing WED/RLS outside of pregnancy (someantidepressants or neuroleptics) might worsen WED/RLS evenduring pregnancy. Mauro Manconi, MD, PhD

A: Other medications to avoid include antidepressants; however,we would caution that the woman NOT stop her antidepressantwithout first consulting her provider. Zofran, an antinauseamedication, does not appear to exacerbate WED/RLS.Wellbutrin, an antidepressant, does not appear to exacerbateWED/RLS. In addition, all women develop some level ofphysiologic anemia during pregnancy due to a 50 percentincrease in blood volume. A pregnant woman with WED/RLSwhose symptoms worsen should ask her provider to check aferritin level (at minimum) to evaluate the levels of iron storedthroughout her body. All pregnant women need to eat a well-balanced diet, make certain they get the extra iron that is neededdaily for a healthy pregnancy, and take a daily prenatal vitaminthat includes some iron. Whether or not she is consideredanemic by a blood count, if she has a low ferritin level, ironsupplementation is essential.Jennifer Hensley, EdD, CNM, WHNP

Continued on page 19


Bedtime Stories are the opinions of the authors only and not of the WED Foundation, its employees or its Board ofDirectors. Publication in NightWalkers does not imply endorsement by the WED Foundation. Therapies andresults described in Bedtime Stories reflect the experiences of individuals and cannot be generalized to everyone withWED/RLS. It is important to talk to your healthcare provider and investigate concerns such as safety, efficacy andcost before making any changes to your treatment regimen. Stories may be altered for length or clarity.

Bedtime Stories

I have to share something that has worked wonders for me atnight. HealthmateForever makes a TENS unit that massagesyou. It’s wonderful and I love it! I’m still taking ropinirole, butthis helps me fall right to sleep.– Denise B.

Editor’s note: A transcutaneous electrical nerve stimulation (TENS)unit should only be used under the care and instruction of aphysician. There are applications where a TENS unit iscontraindicated, such as in pregnant women, people with epilepsyand individuals who have pacemakers.

My back is a mess from scoliosis and other problems, so mydoctor implanted a pain pump in my right side. It has to berefilled (with something like Dilaudid) every so often, and thesteady dosage can be increased/decreased when/if needed. It wasstarted with a low dosage so that there is plenty of room forincreases. Ever since the pain pump was installed, I have had noWED/RLS. The problem seemed to just melt away. Now thismay not be applicable to everyone who has WED/RLS, but I, atleast, have achieved fantastic relief. I had this implanted in2011, and have experienced no WED/RLS since that time.

My pain pump ran “dry” oncerecently, and before I could getto the doctor for a refill,WED/RLS returned big time.The pump is now working great,and I’m having no problem withWED/RLS.– Joyce G.

What I’m writing about is not a cure but a way one suffererhas found to alleviate the inability to sleep at night: A man Iknow buys a container of magnesium powder at a health foodstore and takes a half-teaspoon of it half an hour beforebedtime.– Myriam H.

Continued from page 18

Q: I have had WED/RLS for over 35 years. I’m on Requipand have also been in a couple of motorcycle accidents. Inow have pins and plates in my feet and legs. When myWED/RLS kicks in, it’s a living hell; I have damaged myknee because of the violent jerking.

A couple of months ago I started getting facial jerks. eyare violent and hurt like heck! I’ll be working, and it’slike someone hits me with a million volts of electricity inthe face only, more on the right side of my face. My facecontorts and my gum pops out of my mouth. Any idea ofwhat is wrong or how to fix it? Am I getting WED/RLS inmy face now?

A: is is an unusual presentation in the context of WED/RLS.I would suggest a polysomnography if the symptoms arepresent during evening/night, or a daytime polygraphy ifnot. is will help rule out other possible diagnoses such asfacial spasm, other forms of myoclonus, or a trigeminalneuralgia. Moreover, polysomnography may tell us if there issynchronization between periodic limb movements and thesefacial motor events.Mauro Manconi, MD, PhD


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]

Charmaigne MennRancho Mirage, [email protected]

Lola Scavo - ContactFullerton, [email protected]

Susan SchlichtingRedondo Beach, [email protected]

William SchrammSalinas, [email protected]

Kaileigh TaraSan Diego, [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 SecretanEagle, [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 Langelier*Ocean Park, [email protected]

MASSACHUSETTSSheila Connolly - ContactHyannis, [email protected]

MISSOURIRoseanna LeachOronogo, [email protected]

Kathy Page*Smithton, [email protected]

NEBRASKALinda Sieh - ContactNaper, [email protected]

NEVADAFlora WoratschekHenderson, [email protected]

Shawn McDowellReno, [email protected]

United States



WED/RLS Support Group Network

InternationalThe following independent groups,located out side of the U.S., work incooperation with the WED Foundation.

AUSTRALIARestless Legs Syndrome Australiawww.rls.org.au

AUSTRIADachverband der österreichischenSelbsthilfegruppenwww.restless-legs.at

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

BRAZILLucio Pereira SoluchinskySão José dos Pinhais, [email protected]

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

SWEDENRLS Förbundetwww.rlsforbundet.se

SWITZERLANDRestless Legs Schweizwww.restless-legs.ch

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

NEW HAMPSHIRERoberta KittredgeHampton, [email protected]

Gail Richens - ContactHanover, [email protected]

NEW JERSEYElda CostiganEdison, [email protected]

Dot QuillCape May Court House, [email protected]

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]

PENNSYLVANIAAlice Maxin - ContactLeechburg, [email protected]

Kim Jedlowski - ContactLower Burrell, [email protected]

Ethel Rebar - ContactMadison Township, [email protected]

Dennis MooreYork, [email protected]

RHODE ISLANDBrenda CastiglioniWest Greenwich, [email protected]

UTAHSpencer and MorganChristensen - ContactsProvo, [email protected]@rlsgroups.org

VIRGINIAPatricia Arthur - ContactLynchburg, [email protected]

Pamela Hamilton-StubbsHenrico, [email protected]

Annette Price - ContactNewport, [email protected]

Carol Seely–Contact Haymarket, [email protected]

WASHINGTONTeresa KincaidSpokane, [email protected]

Allyn K. Ruff - ContactPuyallup, [email protected]

Charlotte SpadaAnacortes, [email protected]

Roger Winters - ContactSeattle, [email protected]

WISCONSINJames AlfEau Claire, [email protected]

Roger BackesFitchburg, [email protected]

CanadaCarol AbboudConnolly - Contact

Masham, [email protected]

Karen ConwayChilliwack, [email protected]

Beth FischerYellowknife, [email protected]

Armand GilksToronto, [email protected]

Gwen Howlett - ContactBrantford, [email protected]

Wendy Lowden - ContactHamilton, [email protected]

Heather McMichaelLondon, [email protected]

Pamela OakeSt. John’s, [email protected]

Randy ThompsonBarrie, [email protected]

CyberspaceOnline Discussion BoardModerators

Ann [email protected]

Beth [email protected]

Betty [email protected]

Clinical TrialsA clinical trial is a research study that uses volunteers to investigatespecific health questions. Below is a partial list of WED/RLS clinicaltrials currently seeking volunteers. Please contact the institutiondirectly if you are interested in participating. All studies listed havereceived Institutional Review Board (IRB) approval, which allows usto ensure that they follow established protocols. Please note: This is nota comprehensive list. To search for clinical trials in your area, visitwww.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 available fortime and travel expenses. To learn more, contact Tiana Krum at410-550-1046 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].


New Brochure on WED/RLS in CognitivelyImpaired AdultsThe WED Foundation has published WED/RLS in Cognitively Impaired and Older Adults, an informational brochure for patientsand healthcare providers on diagnosis and treatment. This brochure is made possible through the generous donation of time andexpertise by members of the WED Foundation Medical Advisory Board.

To order WED Foundation educational materials, use the order form on page 23 or call 507-287-6465.

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. (©2013)Children and RLS: Restless Legs Syndrome and Periodic Limb Movement Disorder in Children and Adolescents:A Guide for Healthcare Providers. (©2007)Depression and RLS: Special Considerations in Treating Depression when the Patient has Restless Legs Syndrome. (©2011)Surgery and WED/RLS: Patient Guide. Please inquire about availability.WED/RLS in Cognitively Impaired Older Adults. (©2014)Medical Bulletin. Contains the latest WED/RLS diagnosis and treatment information for healthcare providers. (©2014) 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. ($30 U.S. or Canada • $40 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 programwhere 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: __________ 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 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 _____________________________

1530 Greenview Dr SW Suite 210

Rochester, MN 55902

Phone: 507-287-6465

Fax: 507-287-6312

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