NIGHTWALKERS - Restless Legs Syndrome · The program will benefit patients and their families, through: ... be put to good work toward improving care for people living with WED/RLS

formerly RLS Foundation

NIGHTWALKERS

WED FoundationLaunches Quality CareCenterspage 3

Tips For Talking WithYour Doctor Aboutthe Name Change page 7

Complementary/Alternative Medicineand WED/RLS page 15

In search of a good night’s sleep

Spring 2013

Ask the

Pharmacist

page 8

Member

Spotlight

page 9

In the News

page 12

Ask the

Doctor

page 18

Bedtime

Stories

page 19

From the Director

“The best time to plant an oak tree was 20years ago. The second best time is today.”

– AnonymousThis issue of NightWalkers describes an initiative that will belaunched this summer, the WED Foundation’s certified WED/RLSQuality Care Centers program. The roots of this initiative lie in aconcept formed by our Board of Directors in 2011, to identifyclinical care centers to become leaders in the field of scientificresearch and clinical care delivery for WED/RLS. This model,sometimes called “centers of excellence,” has proved very effective forother chronic conditions such Parkinson’s disease, autism andAlzheimer’s disease.

The branches of this new model will incorporate active collaboration between the WED/RLSprovider, the affected patient and his or her family, and the Willis-Ekbom Disease Foundation. Andthe fruit of this program will be consistent, high-quality clinical care for Willis-Ekbom diseasepatients everywhere.

Anyone who has planted a tree knows that it must be planted in good soil, watered often andprotected from the cold winter frosts until it can stand alone and thrive. This summer we will askyou to help prepare the ground for this Quality Care Center Oak Tree with a pledge gift. We willinvite you to join us by giving an extra gift each summer for five years – something like a “specialcollection” fund in a church or other organization. Your pledge, in any dollar amount, will combinewith those of thousands of others to nourish this true partnership of patients, providers andneuroscientists toward timely diagnosis and effective treatment for all who live with WED/RLS.

Now is the time to plant this tree, for ourselves, our children and generations to come. Twentyyears from now, we’ll be thankful that we did.

Sincerely,

Georgianna Bell, Executive DirectorWillis-Ekbom Disease Foundation

Georgianna BellExecutive Director, WED Foundation

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

Board of DirectorsJacquelyn Bainbridge, PharmD, ChairMichael Brownstein, MD, PhDCarol CiluffoJohn DzienkowskiRégis Langelier, PhD, TreasurerKathy PageMatthew A. PicchiettiVirginia RothRobert (Bob) H. Waterman, Jr.

Medical Advisory BoardMichael H. Silber, MB, ChB, ChairPhillip M. Becker, MDMark J. Buchfuhrer, MD, FRCP(c), FCCPChristopher J. Earley, MD, PhDDiego 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, MD, PhDEmmanuel J. Mignot, MD, PhDKarin Stiasny-Kolster, MDClaudia Trenkwalder, MDGeorge Uhl, MD, PhD

Executive DirectorGeorgianna Bell

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: Georgianna Bell, 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

www.willis-ekbom.org NIGHTWALKERS I 3

Willis-Ekbom Disease (WED) Foundation Newsformerly Restless Legs Syndrome Foundation

The WED Foundation is pleased to announce the launch of anew program to improve treatment for people who haveWillis-Ekbom disease (restless legs syndrome, or WED/RLS).This year, the Foundation will begin to develop a network ofWED/RLS Quality Care Centers that have highly developedexpertise in diagnosis and treatment. Centers will be recognizedas leaders in the field, serve as liaisons to primary care providersand support groups, and be listed in Foundation materials.

The program will benefit patients and their families, through:

• Recognition of a center or individual provider as a specialistin treating WED/RLS patients with a range of complexity and comorbidities.

• Availability of Quality Care Centers as information andreferral resources for primary care providers.

• Listing of Quality Care Centers in Foundation materials so that people who have moderate to severe symptoms can find the care they need.

• Better understanding of the patient and family role in quality care improvement through educational offerings and print materials.

• Over time, global improvements in care as a result of projects conducted through the Quality Care Centers.

This spring, the Foundation will begin contacting providersabout the opportunity to become certified as Quality CareCenters. Certification is based on criteria developed by theWED Foundation Medical Advisory Board and requires a highlevel of expertise and experience treating WED/RLS patients.

This program reflects a fundamental belief that every persondeserves effective treatment, says WED Foundation ExecutiveDirector Georgianna Bell. “We frequently hear from peoplewho are suffering from lack of adequate treatment. They mayhave a provider who doesn’t understand their disease, or theymay be taking medications but still experiencing breakthroughsymptoms. Nobody with WED/RLS should have such areduced quality of life. This disease can be managed, and weaim to help providers fulfill this expectation.”

Persistent Challenges

Every year, the Foundation hears from thousands of men,women and parents who need help finding a knowledgeableprovider, understanding their disease, or finding answers whentheir medications lose effectiveness.

• Delayed diagnosis: In 2013, the medical community is still unprepared to promptly and accurately diagnose WED/RLS. Only half of the respondents in a 2012 survey of WEDFoundation members reported receiving a correct diagnosis at their first doctor visit.

• Ineffective treatment: Treatment options (including bothlabeled and off-label drugs) do not provide consistent relief of symptoms. In the 2012 member survey, respondentsreported using a total of 19 different medications in sixdifferent classes, illustrating just how difficult it is to treatthe disease.

Through education, sharing of best practices and qualityimprovement projects, the Quality Care Center program willhelp address these challenges.

Supporting High-Quality Care: What You Can Do

As a member of the WED/RLS community, your support isneeded. This year, the Foundation will ask you to help bypledging an annual gift to the Quality Care Center program, inaddition to other donations you currently make. In the comingmonths, you will receive a special communication that outlinesthis opportunity and how to plan for it. Please consider budgetinga gift according to your means. Your pledge, in any amount, willbe put to good work toward improving care for people livingwith WED/RLS.

Changing the game for WED/RLS is a long-term process, saysBell. “This won’t happen overnight. Together as a community,we can make this change. Everything starts somewhere. This isthe basement, the foundation we’re building. We’re all lookingup with our hard hats on.”

To learn more about the Quality Care Center program, visitwww.willis-ekbom.org.

WED Foundation Launches Quality Care Centers


Willis-Ekbom Disease (WED) Foundation Newsformerly Restless Legs Syndrome Foundation

Board of Directors WelcomesMichael BrownsteinThe WED Foundation is pleased to welcome Dr. MichaelBrownstein to its Board of Directors. Dr. Brownstein has been avalued contributor to the Foundation for many years. In 1997, heattended the hallmark “Dopamine Connections” workshop at theNational Institutes of Health (NIH), which set the researchagenda for the Foundation and helped create the ScientificAdvisory Board. A founding member, Dr. Brownstein served onthe Scientific Advisory Board from 1997 until 2012.

“My dad had WED, so I understand how troublesome it can be,”says Dr. Brownstein. “I am convinced, however, that we candevelop better diagnostic tools and treatments for the problem,and I hope that the Foundation can stimulate work on these.”

Dr. Brownstein has worked in the fields of neurobiology,neuroendocrinology, biochemical pharmacology, genetics andgenomics; published more than 300 papers in reviewed journals;

and served on major editorial boards, peerreview committees and nonprofit scientificadvisory boards. He cofounded severalsuccessful biotech companies, andcurrently advises and helps to createnew ones.

Dr. Brownstein earned his bachelor’s degreefrom Columbia University and an MD andPhD in pharmacology from the Universityof Chicago. After completing a fellowship at the NIH, Dr.Brownstein served as chief of the Laboratory of Genetics of theNational Institute of Mental Health (NIMH) and the NationalHuman Genome Research Institute. He also served as thescientific director of the NIMH Intramural Research Program fortwo years and directed the functional genomics program at the J.Craig Venter Institute in Rockville, Maryland.

At the end of each calendar year, we say good-bye to one or moreFoundation Board of Directors members. Each of these individualsdonates their time, talent and passion toward achieving the missionof the Foundation. They will tell you that the road can be difficult,and the signposts are not always clearly marked. Each makessignificant contributions to the organization, and the entireWED/RLS community can thank them for a “job well done.”

Diana Bartlett

Diana joined the Board in January of 2010. She resides inClaremont, California, and is the director of corporate partnershipsat the Keck Institute of Applied Life Sciences at ClaremontColleges. Through her leadership, the WED Foundation developedand launched its first Corporate Council, an industry-basedprofessional advisory board. She served as a member of the BoardExecutive Committee and the Centers of Excellence Task Force.She served on the Board during a time of great changes: the “birth”of the Quality Care Initiative and the name change from restlesslegs syndrome to Willis-Ekbom disease.

Jennifer Hensley, EdD, CNM, WHNP

Dr. Hensley is a certified nurse midwife and serves as coordinatorof the Nurse Midwife and Women’s Health Options in the College

of Nursing at the University of Colorado. She joined the Board inOctober 2011 and worked with WED Foundation MedicalAdvisory Board member Dr. Dan Picchietti to revise theFoundation’s brochure Vital Considerations in Treating a PregnantPatient who has Restless Legs Syndrome (RLS). She resigned from theBoard of Directors at the end of 2012 to join the Foundation’sMedical Advisory Board. We welcome her considerable skills in thisnew area.

Roberta “Bobbie” Kittredge

Bobbie was invited to join the Board in 2007 after serving severalyears as the New Hampshire WED Foundation support groupleader. Her Board committee assignments brought her intoleadership capacity on several levels, serving as Board Vice Chair,Chair of the Governance and Nominating Committee, andmember of the Executive Committee, Development Committeeand Name Change Ad-Hoc Committee. Bobbie’s tenure on theBoard saw many transitions – she served under Board Chairs LewPhelps, Janice Hoffmann and Jacci Bainbridge; sale of theFoundation’s office building; creation of Centers of Excellence; andthe name change. We will miss her positive presence and NewEngland “can do” attitude.

Board Member Transitions

Dr. Michael Brownstein


From the Development Chair

Making That Special GiftOne of life’s pleasures is to receive a gift. Not just any gift, but one that you didn’t expect – onethat means something special to you. Special gifts to me have been drawings by my childrenand grandchildren, the first dandelion of the year, and a wall plaque my dad made for me. Aneven greater pleasure is to give such a gift to someone in your life.

If you are reading this article, chances are that you or someone close to you has WED/RLS.You know the devastation and how helpless we sometimes feel when dealing with this disease.By making a donation to the WED/RLS Foundation in someone’s honor, you not only give aunique gift, but also help pave the way for research, education and awareness. To me, a giftsuch as this says that someone believes you, supports you and wants to be a part of your fight.

Mother’s Day, Father’s Day, birthdays and other special occasions are a great time to make adonation in honor of someone. I make a recurring monthly gift to the Foundation that I haveauthorized to be taken out of my checking account. This monthly gift is in honor of specialfriends I have met while learning to deal with WED/RLS. Memorials are another wonderful wayof giving – of saying “I remember” and “I still care.” All donationsare recognized by the Foundation, which then sends a letter to thegift recipient. These gift donations can be specified to certain areas,such as research, education or general use.

Gifts like these keep on giving. Every donation helps suffererslearn a little more about dealing with this disease,sends more awareness into the medical community, helpsfund research for medications, causes and a cure, and showsthat someone loves us. Now that is a special gift!

Sincerely,

Kathy Page2013 Development Chair

Kathy Page2013 Development Committee Chair

Honor RollThe Willis-Ekbom Disease (WED) Foundation is sincerely gratefulfor the donations we have received in memory and in honor of thefollowing individuals*:

HonorariaMark GruesbeckTrevor PaynePeggy SchmidtRuth Wixted

MemorialsMargaret BeckerEdna BlainNorma GayDoris MacdonaldDavid Mayer, MDHelene MottesMarion PerraultEdwina Trichler

January 29, 2013, to April 16, 2013


Letter from Virginia

Living with WED/RLS

When I was diagnosed as having RLS, I was convinced that I sufferedfrom a rare disorder as I did not know of a single person who had it. Iinquired for information from the National Organization for RareDisorders (NORD) and received a small packet plus the name andaddress of Oron Hawley in Escondido, California. When I wrote tohim he replied that he was corresponding with six others who also hadRLS, so I joined his little group. Oron had listed his name in anumber of health help places, and by December 1990 there weretwenty-three in our round-robin letter circle. Oron was past ninetyand as he was caring for his wife, a victim of Alzheimer’s, he told methat he would have to quit his editing task. These letters andfriendships had meant so much to me that I offered to do thesecretarial work. For almost a year we did the letters together.

I named the letter The Night Walker. A number of the group sentin checks to help pay for postage. The bank wouldn’t cash thechecks made out to the RLS support group, and I had to returnthem to be rewritten. Frustration! I certainly needed help and hadno idea what to do until my daughter told me we needed to forma tax-free foundation.

Next I wrote to Abbey Meyers of NORD. She offered a scholarship tosome training sessions. Tim Byrne had joined our group in October1991. Since he lived near the convention site, I asked him to attendfor us. He and his wife sent back detailed notes.

My daughter told me that I needed to look for a lawyer who wouldhelp set up a foundation without a fee. It has been my good fortune tohave the right person come into my life when needed. It happenedagain. On January 11, 1992, Pickett Guthrie joined our circle ofsufferers. When I learned she was the librarian for the largest law firmin North Carolina, I called her for advice. The firm supplied her withall the needed papers and gave her instructions on how to fill themout. She signed all the necessary papers as treasurer. I was the secretary.For the needed presidential signature, we asked Tim Byrne. OronHawley told us that he was unable to become a part of this new phaseof growth but he remained committed to the Foundation until hisdeath in 1996. Elmer Hartgerink gave us our first substantial gift, withwhich we opened the Foundation’s first bank account.

The RLS Foundation can never thank Pickett Guthrie enough for heryears of work and devotion to our growth from a small circle ofcommon sufferers to a national organization attracting the attention ofthe medical community and the media. Her great personal skills notonly made this Foundation possible, but made it prosper into the

outstanding organization that it is today. Pickett had the vision allalong. She laid the ground work, met all the right people, andmade proper alliances upon which the Foundation continues tobuild its future.

How often we received letters full of tears and agony about the lack oftreatment available, and we could give no guidance! To the best of ourability, we provided information and answered inquiries. When Dr.Arthur Walters, who was treating RLS patients and writing about thecondition, offered to help we had no idea how important that offerwould prove to be. He went on to help in forming the MedicalAdvisory Board (MAB). We will always be grateful for the untoldhours that Drs. Walters, Wayne Hening, and Richard Allen gaveto this nebulous group beginning in 1992 and continuing up tothe present time. They clearly shared the vision of the importanceof our organization.

With the passing of the torch from volunteers to a paid staff, we havehigh hopes that the Foundation has finally found its importance inthe medical world. In addition, we salute the Scientific AdvisoryBoard (SAB), feeling confident that when the cause of our mysteriousdisorder is found, a cure will follow. With the MAB and SAB workingwith our lay Board, success is assured.

All of us must remain boosters for the task of uncovering theunknown. We early volunteers prepared the way, now it is timefor the work to be carried out by professionals. Our children andour grandchildren deserve to be free of the physical torture thatbesets us daily. It is our duty to be surrogate scientists by ensuringthat the future work will be successful. We can do that bycontributing to the research fund.

When we need it, it will come. It has never failed this group—and itwill not fail us now. We all must work together to achieve our goals.Let’s celebrate our Fifth Anniversary with much thanksgiving.

Virginia Wilson, Founding SecretaryOrange Park, Florida

The following letter is reprinted from the November 1997 issue of NightWalkers. On the occasion of the fifth anniversary of the WED Foundation(known then as the RLS Foundation), founder Virginia Wilson recounts establishment of the Foundation in 1990. Wilson served as secretary until1996 and authored the memoir Sleep, Thief, an enduring resource for people living with WED/RLS.

“We all must work together toachieve our goals.”


WED/RLS Name Change:Tips for Talking with Your Doctor

Living with WED/RLS

We have heard from a number of Foundation members andFacebook followers whose healthcare providers either have littleknowledge about the name change from restless legs syndrome toWillis-Ekbom disease or are reluctant to use the new term. Hereare some things to keep in mind when talking with your provider:

• Changing the name of a disease is a gradual process:

• The first vital step was to reach agreement among different • stakeholders, including patient organizations in other • countries, other medical organizations, and those responsible • for official disease classifications and nomenclatures. • The next step will be to educate healthcare providers and the • public about the change. This is an extensive process, and the• old and new names will need to be used together for some time.

• You can help educate your provider by bringing copies of• educational materials to your next doctor visit. The following • are available free of charge on www.willis-ekbom.org or in hard • copy from the Foundation by using the publications request • form on the inside back cover of this newsletter:

• Causes, Diagnosis and Treatment for the Patient Living with• Willis-Ekbom Disease/Restless Legs Syndrome brochure• WED/RLS Medical Bulletin, a comprehensive guide for • providers – available late 2013 (contact the Foundation to be • added to the mailing list)

• Not everyone will like or embrace the new name, and your• doctor may choose to continue using the term “restless legs• syndrome” as an alternate name for Willis-Ekbom disease. You • can request that he or she use the term Willis-Ekbom disease in• conversations with you when you are discussing your disease• management. Be respectful, but also be assertive. You are• the “customer” in this relationship and your preference should• be respected.

• For perspective on the name change from Daniel Picchietti, • MD, and WED Foundation Executive Director Georgi Bell, • watch a recording of the Foundation’s recent “name change” • webinar, available at www.wedinfo.blogspot.com.

Provider Excellence Essay Contest

Have you ever walked out of the doctor’s office with renewedhope in your journey with WED/RLS? Has a nurse or homehealth aide ever given you a fresh insight on how to manageyour disease? Has your yoga instructor helped you through arough time?

Now is your chance to recognize your provider! In celebration ofthe new WED/RLS Quality Care Center program (see page 3),the WED Foundation is offering an opportunity for you to sharea memorable moment when you received high-quality care. Byentering the contest, you could be one of three winners to:

• Have your essay published in NightWalkers• Receive a prize of a $25 gift card and a Foundation clothing item• Inspire thousands of others with your positive story

Contest guidelines• Your story must be about a real experience with a professional • who has helped you manage WED/RLS; providers can be• traditional or alternative medicine professionals.• Essays will be judged on appropriateness to the theme,• originality of idea, creativity and inspirational content.• Essays should be no more than 800 words in length.• Contest is open to residents of the U.S. and Canada.• Please submit only original material that has not been• published previously and that does not in any way infringe on • the privacy of any other individual or institution. • All entries must be received by midnight on July 1, 2013.

Submit your storyTo enter, simply send your typed or handwritten story (800words maximum, preferably double-spaced in a Microsoft Worddocument) by July 1, 2013 to [email protected] or by mailto the WED Foundation, 1530 Greenview Drive SW, Suite210, Rochester, MN 55902. Please do not write your name onyour story, but include a separate page with your name, essaytitle and age (optional). Essays will not be returned.

Essayists retain full copyright of their material but grant theFoundation permission to publish their essay in whole or inpart in NightWalkers and on the WED Foundation website(www.willis-ekbom.org). Essays may be edited for style andlength before publication.

Thank you for sharing your story!


Ask the Pharmacist

Q. Please explain augmentation and other sideeffects of dopamine medications.

A. Levodopa and the dopamine agonists, though proven to be veryeffective agents for managing WED/RLS when used chronically,have three common problems: augmentation, compulsive behaviorand sleepiness. These three problems will not occur in everyone ondopamine agents, but when these symptoms do occur, the patientshould reduce or discontinue the medication under the direction ofa healthcare provider. Exchanging one dopamine drug for another islikely to provide, at best, only temporary relief of these symptoms.

1. Augmentation is the most common long-term side effect. Studiesshow that about seven percent of patients per year who are ondopamine agonists will develop augmentation. So even if you havebeen well treated on a dopamine agonist for five years, you can stilldevelop augmentation. If the dose of the drug that you initiallystarted with has more than doubled over the years, you more thanlikely have augmentation and will require increasing doses. If yoursymptoms, when they do break though, are more severe, intense andunbearable now than when you first initiated the medication, thenyou are probably augmented. If you now have moderate to severesymptoms in the early evening, afternoon or even morning, whichwas not the case years ago, then you are probably augmented.

With augmentation, your brain becomes more and more dependenton the dopamine agonist and you brain probably makes less and lessof it own dopamine. So you essentially develop increasing physicaldependence on the drug. If you reduce the drug or try to stop thedrug, your greatest fear is realized. Adding alternative drugs likegabapentin or an opiate (e.g., oxycodone) may have temporarybenefits, but an increase in some or all of the medications isinevitable. My approach to treating this drug-related problem is to“detox” patients off the medication by withdrawing them from thedopamine drugs, before I institute alternative treatments. By getting

off the dopamine drug, you allow your natural brain levels ofdopamine to return.

2. Sleepiness associated with dopamine drugs has several forms.First, patients may complain of becoming severely sleepy soon aftertaking the medication. Second, some patients may complain ofhaving problems staying awake throughout the day even if they arenot taking the drug during the day. Third, patients may notnecessarily feel overly tired during the day, but if they sit or rest atall, they cannot stay awake.

3. Compulsive behaviors can take on many forms (e.g., shopping,eating, gambling and sexual activity). Less obvious forms mayinvolve subtle personal behaviors like thoroughness or tidiness. I hada patient who lost his job because he was so compulsive about doingthe job thoroughly that he never got the work done. Often thepatient is not aware of compulsion, though spouses or familymembers are. If the behavior is out of character and excessive innature, then think about the drug causing it. Reducing the dose mayhelp, but there is no guarantee that symptoms will not come backeven at the lower dose.Christopher Earley, MD, PhD

is section includes answers to medication-related questions. As with all of our medical information, content has been reviewed by aWED/RLS clinical specialist. Information is offered for educational purposes only and should not be considered a substitute for the adviceof your healthcare provider. To submit a question, send a message to [email protected] or call 507-287-6465.

Horizant in Short Supply

Drug developer XenoPort, Inc., announced in April a shortage of its WED/RLS medication Horizant in the U.S. due to manufacturingdelays. e company said it had received word from patients unable to fill their Horizant prescriptions. XenoPort hopes that a new stockof Horizant will be in pharmacies in June, but the timing is uncertain. To learn more, visit http://[email protected]


Member Spotlight

In about 1998, my eight-year-old granddaughter and I werecamping in New Hampshire. It was cold and rainy, so we spentquite a bit of the time huddled in our pop-up camper. I just wantedto bundle up in my sleeping bag and take a nap. But there was norest for me! My granddaughter said, “I’m sorry, Mimmi,” as shewitnessed my struggle for rest. I knew then that I needed to visit mydoctor.

Thank goodness my doctor told me I had restless legs syndrome(now called Willis-Ekbom disease, or WED/RLS) and not somepsychiatric problem. However, he prescribed Sinemet. Oh, that firstnight’s sleep was “delicious!” But before long, I found that I couldnot sit through a meeting at work without swinging my legs underthe table. My daughter began searching the Internet, and found thatSinemet, as we all now know, has the serious side effect ofaugmentation. I educated my doctor about this and he prescribedRequip, which worked well for several years. When Requip nolonger controlled my symptoms, my doctor changed myprescription to Mirapex.

Meanwhile, both my daughters began to experience the symptomsof restless legs syndrome. My son is still fighting for sleep withoutbenefit of medications. They all say, “Thanks, Ma,” for my role intheir inheriting this life-changing problem.

In 2003, I became a support group leader for the RLS Foundation(now the WED Foundation) and have been active with creatingawareness, offering support and educating others in my area eversince. Understanding and coping with WED/RLS has been ajourney of a lifetime for me, for my communities of friends andchurch, and for my family.

The hospital experience

In the fall of 2011, my doctor diagnosed me with rectal carcinomawith neuroendocrine features, an extremely rare form of cancer.Even at the University of Texas MD Anderson Cancer Center, apremier cancer institute, they had a difficult time with the specificdiagnosis. When the doctor talked to us about it, he said there is solittle known about it that the treatment would be for ordinary rectalcancer. Isn’t that a scary thought?

The story about my initial hospitalization on February 15, 2011, atMD Anderson is still fresh in my mind. Before the surgery, I had adetailed discussion with my anesthesiologist and provided him withthe Foundation’s Surgery and RLS brochure. After the surgery, I wason pain meds, so my WED/RLS seemed to be under control.However, when the pain meds were reduced, suddenly there werethose creepy-crawly feelings in my legs. The hospital stockedMirapex, but they refused to give me any extra to “get ahead” ofthose familiar feelings. I asked to walk so many times that the nursesbegan to tell me, “No more walking. You’ve got to stay in bed and

stay still.” If they’d only known theextent of my anguish! Finally, Iasked to be given Sinemet(carbidopa/levodopa) at about 2:00p.m. along with my Mirapex atnight. Only then did I get some rest.

Unfortunately, that’s not the end ofthe story. When I returned to ourlittle “cottage in the woods” inMaine, I soon developed a blockedbowel, which called for another bigsurgery. Again, I had a longdiscussion with this anesthesiologistand provided him the Surgery andRLS brochure. This surgery resulted in a near shutdown of mykidneys – a real nightmare. This time, the hospital stocked Mirapexin the pharmacy, but not Sinemet. My husband brought mySinemet and gave it to the nursing staff, and they freely gave me adose every day at 2:00 p.m.

The lessons learned are: 1) take your WED/RLS prescriptions fromyour doctor to the hospital before the date for your surgery, and2) to help educate hospital staff, bring related WED/RLS brochureswith you on the date you are admitted.

Recording your stories

One of my passions is writing stories that record memories of myfamily. This began many years ago when my most beloved father-in-law began to tell me wonderful stories of his childhood growing upin a small farming community in central Texas. I wrote them downon scraps of paper, backs of envelopes, etc. When I was asked tosubmit my stories to a new history book for the county thatincluded his community, I gathered all my notes and pictures for thesubmission, carefully noting that the stories were told to me by myfather-in-law. Now those stories and pictures are included in the bigred history book for Grimes County, Texas. I read them to mygrandchildren so they will know a little about their heritage.

With cancer threatening to shorten my life, I feel a real urge to completeall my stories. An important part of telling my stories is to write aboutliving with restless legs syndrome so future generations can read aboutmy journey of coping with a disease that is still underdiagnosed andmisunderstood. I have given my stories as gifts to my children, mygrandchildren and my sisters. These stories are my legacy.

Sally Breen was born in Brownsville, Texas, spent time in ColoradoSprings, Colorado, returned to Texas in 1979, and now lives inWindham, Maine. She has happy memories of raising her threechildren, of her work towards a nuclear-weapons-free-world, and a lifefull of adventure traveling in Central America.

Cancer and Restless LegsBy Sally Breen

Sally Breen

WED/RLS Support Group NetworkAcross the U.S. and Canada, support groups bring people together to share their feelings about living with WED/RLS, discuss ways tocommunicate with their families, friends and healthcare providers, and learn about the latest treatments. For more information, contactthe support group leader near you.

The WED Foundation also maintains a network of contacts. Contacts are individuals who have volunteered to offer support by phoneor email to people in their area who are looking for WED/RLS information, resources and support. They do not hold meetings, butthey can assist you in finding help where you live.

The most up-to-date support group information is available on our website, www.willis-ekbom.org, where you can search by state orprovince, or browse a list of upcoming meetings. If you are unable to reach a contact or support group leader in your area, please contact theWED 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]

Janis Lopes - ContactSan Diego, [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]

COLORADOKay HallHighlands Ranch, [email protected]

Llyn LankfordBoulder, [email protected]

DELAWAREBetsy Lacinski - ContactNewark, [email protected]

FLORIDAMary 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]

ILLINOISGail Sesock - ContactHerrin, [email protected]

INDIANALinda KlugBloomington, [email protected]

Diane WeissenbergerIndianapolis, [email protected]

IOWAThelma Bradt - ContactWest Des Moines, [email protected]

Kay DayKeokuk, [email protected]

Delila Roberts - ContactHuxley, [email protected]

Elaine Tucker - ContactStory City, [email protected]

KANSASJohn LaFeverWichita, [email protected]

Nora WalterLenexa, [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]

MICHIGANNeva WarsenGrandville, [email protected]

MISSOURIRoseanna LeachOronogo, [email protected]

Kathy Page*Smithton, [email protected]

NEBRASKALinda SiehNaper, [email protected]

NEVADAFlora WoratschekHenderson, [email protected]

NEW HAMPSHIRERoberta KittredgeHampton, [email protected]

United States


*Also serves on the WED Foundation Board of Directors


WED/RLS Support Group NetworkGail 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 MaxinLeechburg, [email protected]

Ethel Rebar - ContactMadison Township, [email protected]

RHODE ISLANDBrenda CastiglioniWest Greenwich, [email protected]

UTAHSpencer Christensen–Contact Provo, [email protected]

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 - ContactMasham, [email protected]

Karen ConwayChilliwack, [email protected]

Armand GilksToronto, [email protected]

Gwen Howlett - ContactBrantford, [email protected]

Wendy Lowden - ContactHamilton, [email protected]

Heather McMichaelLondon, [email protected]

Pamela OakeSaints John, [email protected]

Randy ThompsonBarrie, [email protected]

CyberspaceOnline Discussion BoardModerators

Ann [email protected]

Beth [email protected]

Betty [email protected]

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 KINGDOMThe Ekbom Support Groupwww.rlsuk-esa.org.uk


In the NewsWED/RLS and Pregnancy… Taking Another Look.Characteristics and Determinants of Restless Legs Syndrome inPregnancy: a Prospective Study.A. Hubner, A. Krafft, CL Bassetti. Neurology. February 2013.

The Background:Prior research has stated that WED/RLS can affect up to 30percent of pregnant women, and a number of theories havebeen suggested as to the cause of this phenomenon. However,few of these studies have used ideal methods to assess andcollect data.

The Research:The researchers in this study wanted to perform a prospectivestudy to assess frequency, characteristics and risk factors fordeveloping WED/RLS in pregnancy. A prospective study is simplya study that takes a specific group of people, in this case womenover the age of 18 years who were pregnant, and monitors them forspecific outcomes, in this case WED/RLS. A total of 501 womenwere included in this study. They were studied in each trimester ofpregnancy and eight weeks after delivery.

The results of this study showed that 58 of the 501 women (12percent) were diagnosed with WED/RLS. These women hadsignificantly reduced sleep quality. The research showed that 37percent of the women with WED/RLS had a positive familyhistory of WED/RLS, and 59 percent had WED/RLSsymptoms starting before the 20th week of pregnancy. Womenwho smoked had a higher risk of developing WED/RLS. Therewere no associations between anemia, iron levels, estrogenlevels, water retention or number of previous pregnancies inthose with WED/RLS and those without.

The Bottom Line:The prevalence of developing WED/RLS was much lower inthis study than in previous studies, but this research study wasdesigned and executed very well. Genetic factors and smokingappeared to play a role in developing WED/RLS, but not otherfactors that have previously been identified.

The New Questions:This study did not support results suggested by many otherstudies done in the past. Are there any reasons other than studydesign that could account for this discrepancy? Other thanfamily history and smoking, which is obviously discouraged inpregnancy, this study eliminated many risk factors fordeveloping WED/RLS in pregnancy. Are there any otherpotential causes for increased WED/RLS in pregnancy that canbe studied?

Case Report: WED/RLS in an Amputated Leg.Persistence of Secondary Restless Legs Syndrome in aPhantom Limb Caused by End-stage Renal Disease.S. Nishida, A. Hitsumoto, Y. Inoue. Internal Medicine. April 2013.

A 47-year-old woman, with a 22-year history of type 2 diabetes,was started on insulin shots. At age 55 , she developed end-stagekidney disease due to diabetic nephropathy. This is where thekidneys cease to function correctly as a result of the diabetes.Because of this, she was started on hemodialysis. Within a shorttime after starting hemodialysis, the patient started to experienceuncomfortable sensations in her legs at night that were relievedwith movement and were especially worse in the left leg. At age58, she saw a neurologist, who diagnosed her with WED/RLS.The patient had no family history of the disease.

The hemodialysis was increased in frequency, and herWED/RLS symptoms almost completely disappeared. At age60, the WED/RLS symptoms returned and occurred every day.At age 62, the patient had to have her left leg amputated abovethe knee due to an infection as a result of the diabetes. For thenext two years, the patient continued to have worseningWED/RLS symptoms in her left leg that was no longer there,and she was diagnosed as having phantom left leg WED/RLS.The symptoms were improved by movement of her left hip andleft side of her body, but they would quickly return after shestopped moving. She developed significant insomnia.

The patient was eventually seen in a sleep disorder clinic andwas started on talipexole, a dopaminergic medication notavailable in the U. S. but similar to pramipexole (Mirapex).Within three months, the patient had significant improvementin her symptoms and has not had insomnia for over a year. Shestill has mild WED/RLS symptoms in her phantom limb two tothree days per week.

WED/RLS and Heart Disease… Is There a Link?Vascular Risk Factors, Cardiovascular Disease, and Restless LegsSyndrome in Men.A. Winter, K. Berger, T. Kurth. The American Journal ofMedicine. March 2013.

The Background:The prevalence of WED/RLS and heart disease both increase asa person ages. Previous research studies have given mixed andcontroversial results when trying to determine if there is a linkbetween WED/RLS and cardiovascular disease.

The Research:The researchers in this study wanted to evaluate a large numberof people to find any possible association between vascular riskfactors (high blood pressure, diabetes, elevated cholesterol,family history of heart attacks, alcohol use, smoking, exerciseand body weight), cardiovascular disease (i.e. heart attacks, heart failure, strokes, etc.) and WED/RLS.

The researchers used data from the U.S. Physician’s Health StudiesI (started in 1982) and II (started in 1997). These studies useperiodic questionnaires to obtain medical information from almost30,000 individuals. It was from this collected data that theresearchers in this study obtained their information.


In the NewsThe results of this study showed that 7.5 percent of all men hadWED/RLS (6.2 percent in men less than 60 years of age, and9.8 percent in men over 80 years of age). No change inprevalence based on geographic location was found. Men whohad diabetes had a significantly increased risk of developingWED/RLS. Men who exercised frequently and consumed oneor more alcoholic drinks per day had significantly lower risk ofdeveloping WED/RLS. Interestingly, men who had a strokewere more likely to have WED/RLS, but men who had a heartattack were less likely to have WED/RLS.

The Bottom Line:The risk of developing WED/RLS in men increases with age,diabetes and personal history of stroke. The risk of developingWED/RLS in men decreases with regular exercise, alcoholconsumption and personal history of heart attack.

The New Questions:This study confirms previous research that found an associationbetween WED/RLS and increased age and diabetes; however, whyis there a decrease risk of WED/RLS with alcohol use and historyof heart attack? This study examines a large group of men in theU.S. Would these results be the same if the researchers were able tostudy men in other parts of the world? How about women?

WED/RLS? We’re Getting Warmer!Quantitative Thermal Sensory Testing and Sympathetic SkinResponse in Primary Restless Legs Syndrome – A Prospective Studyon 57 Indian Patients. G. Shukla. V. Goyal. M. Behari. Annals ofthe Indian Academy of Neurology. October 2012.

The Background:Many patients with WED/RLS have been initially diagnosed withperipheral neuropathy. This is damage to the nervous systemoutside of the brain and spinal cord. Likely because of thiscommon misdiagnosis, there has been little research examining theperipheral nervous system in patients with WED/RLS.

The Research:The researchers in this study wanted to evaluate the peripheralnervous system in patients with WED/RLS to see if any differenceswere present. There were 57 patients with primary WED/RLS,without peripheral neuropathy or other neurological disorders,included in this study. They all underwent nerve conductionstudies, thermal sensory testing (which evaluates a person’s ability toidentify slight changes in temperature) and sympathetic skinresponse testing (which evaluates the ability of the sweat glands tooperate correctly when exposed to temperature changes).The results showed that all patients had normal nerve conductionstudies. Sixty-six percent of the patients had abnormal temperaturesensation to both cold and warmth in the legs and abnormaltemperature sensation to either cold or warmth in the arms. Thirtypercent had abnormal sympathetic skin responses.

The Bottom Line:About two thirds of the patients in this study showed abnormalities

of the peripheral nervous system. While this study did not includea control group (healthy group of patients) for comparison, it hasidentified areas for further research.

The New Questions:Do these abnormalities in the peripheral nervous systemgive any direction in identifying a cause or treatment forWED/RLS?

2012 Member Survey ResultsThank you to all 343 Foundation members who completed our member survey on our communications and member benefits. We heard strongly that our primary goals (education, better treatments, and through research, a cure) are well aligned with what members value.

As a result of survey input, you will see a few changes toNightWalkers in coming issues:• More frequent reports about Foundation-sponsored• research • More information about medications through FDA drug • alert articles and the Ask the Pharmacist section• More personal stories about living with WED/RLS,• featured in a new Member Spotlight section replacing the • former Support Group Spotlight section

Survey highlights• Top reasons to be members:

• Stay abreast of news on treatments• Receive information through NightWalkers and other• communications• Learn about the latest research developments

Most valued member benefits: • NightWalkers• WED/RLS Medical Bulletin

Most popular NightWalkers sections: • In the News• Ask the Doctor• Complementary Corner

Least popular NightWalkers sections:• Support Group Spotlight

Most frequent suggestions for improving NightWalkers:• More content about treatments • More content about research• More personal essays

Using the Foundation’s online discussion board:• 10 percent

Following the Foundation’s Facebook page:• 19 percent

Able to find things on the Foundation website rightaway or most of the time:

• 65 percent

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 are legitimate. Please note: This is not acomprehensive 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.

Parents: Does your teen have discomfort in their legs, or restlesslegs syndrome? We are currently recruiting teens between 13 and17 years old. If he or she experiences pain or discomfort in legsduring periods of rest; the urge to move legs when sitting or lyingdown; symptoms that begin or worsen at night; symptoms thatimprove by movements such as walking or stretching; and hasbeen diagnosed with restless legs syndrome; then he or she mayqualify to participate in a clinical research study. Foradditional information, please contact one of our participatingstudy centers nearest you:

Future Search Trials, Austin, TX: 512-380-9595Cincinnati Children’s Hospital Medical Center, Cincinnati, OH: 513-803-1897Comprehensive Research Center, Destrehan, LA: 985-764-1441Children’s National Medical Center, Washington, DC: 202-476-3296Preferred Research Partners, Little Rock, AR: 501-553-9987Florida Sleep Institute, Spring Hill, FL: 352-683-3220Sleep Medicine Centers of Western New York, West Seneca, NY: 716-250-5000MCS Clinical Trial, Inc., Los Angeles, CA: 213-483-9996Josephson Wallack Munshower Neurology, PC, Indianapolis, IN: 317-859-1020St. Louis University School of Medicine, St. Louis, MO: 314-268-2741University Services, West Chester, PA: 866-534-9977SDS Clinical Trials, Inc., Orange, CA: 714-834-1565

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].

• • • • • Does restless legs syndrome have you going in circles? If you havebeen diagnosed with moderate to severe WED/RLS or believe youare experiencing WED/RLS symptoms, the CONCORD clinicalresearch study may be right for you. You may be eligible forfurther screening for the CONCORD study if you are at least 18years of age; and experiencing WED/RLS symptoms for at least 15nights and in the month before beginning the study or, if currentlyreceiving WED/RLS treatment, 15 nights in the month beforebeginning treatment. For more information on this study atCharlottesville Medical Research in central Virginia, visitwww.cvillemedresearch.com or call 434-817-2442.

• • • • • 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.

• • • • • Tingling, creeping, throbbing leg sensations robbing your child’ssleep? Dormir Clinical Trials is currently conducting a clinicalresearch study to evaluate the safety, effectiveness and tolerabilityof an investigational medication for WED/RLS in children. Yourchild may qualify to participate if he/she is between 13 and 17years old and has been diagnosed with WED/RLS or hasWED/RLS symptoms. Qualified participants will receive (at nocost) study-related evaluation by a board-certified sleep specialist;study-related laboratory tests; and study medication. Healthinsurance is not required to participate. For more information,please call 877-927-5337.



Complementary/Alternative Medicine and WED/RLS

Many people use complementary and alternative medicine (CAM)to address chronic symptoms or to improve wellbeing. An estimated38 percent of adults in the U.S. engage in some form of CAM.

While little research has been conducted on using CAM to treatWED/RLS, therapies that help reduce stress and anxiety reductionmay lessen WED/RLS symptoms.

CAM includes a group of diverse medical and healthcare systems,practices and products that are not generally considered part ofconventional medicine. CAM is self-defined depending on the beliefsystems of individuals or cultures. For example, while tai chi might beconsidered an alterative therapy in American culture, it is aconventional practice in China.

Complementary medicine refers to the use of alternative therapiestogether with conventional medicine, like using aromatherapy aftersurgery. Alternative medicine refers to the use of alternative therapiesin place of conventional medicine – for example, using a special dietto treat cancer, instead of chemotherapy or radiation. Integrativemedicine (also called integrated medicine) combines conventionaland alternative treatments.

Examples of Complementary and Alternative Medicine

Alternative medical systems are complete systems that have evolvedover time in specific cultures:• Ayurveda• Chinese medicine• Native American medicine• Aboriginal medicine• African medicine• Middle Eastern medicine• Tibetan medicine• Central and South American medicine• naturopathy• homeopathy

Mind-body interventions affect the mind, body, brain and behavior: • meditation• hypnosis• acupuncture• cognitive-behavioral approaches• biofeedback• mental healing• autogenic training• dance, music and art therapy• prayer

Biological-based therapies include herbal medicines, vitamins,minerals and other “natural” products:• dietary supplements• herbs• orthomolecular therapy (varying concentrations of chemicals) such • as magnesium, melatonin or megadoses of vitamins• individual biological therapies such as laetrile, shark cartilage• or bee pollen

Manipulative and body-based methods focus on thestructures and systems of the body, including bones and joints,soft tissues, and circulatory and lymphatic systems:• chiropractic therapy• osteopathy• manipulation• massage• craniosacral therapy• reflexology

Energy therapies involve manipulating personal energy fields:• qigong• Reiki• therapeutic touch• bioelectromagnetic-based therapies, such as pulsed fields, magnetic • fields, or alternating or direct current fields


CAM and WED/RLS Whether you use CAM for WED/RLS or another condition, it’simportant to tell your doctor. If the therapy improves your WED/RLSsymptoms, your doctor may want to change your treatment strategy –for example, by adjusting a medication dosage. Also, some CAMpractices may interfere with your other WED/RLS treatment orexacerbate symptoms, and vice versa.

While little research exists on using CAM to treat WED/RLSsymptoms, clinical trials have shown promising results in patients whouse yoga, mind-body therapies, or cognitive behavioral therapy; and toa lesser extent, dietary supplementation with valerian or magnesium.More extensive research has been conducted on the effectiveness ofCAM therapies for improving sleep.

Therapies for improving sleepAlternative medical systems• Chinese medicine: acupuncture and acupressure have been shown to • decrease awake time and improve quality of sleep by increasing • production of melatonin, a natural hormone in the body that • regulates the body clock.• Auricular acupressure (stimulation on points of the ear) has been • demonstrated to improve the ability to fall asleep.• Yoga, meditation, hypnosis and biofeedback have all been shown to • improve sleep, as well as decrease anxiety that can increase WED/RLS • symptoms.

Mind-body interventions• Music therapy: therapeutic doses of music have been proven to • transform brain waves and improve sleep, as well as daytime function.• Aromatherapy: several studies have shown that lavender helps • improve sleep and relieve insomnia.

Biological-based therapies• Valerian has been shown effective in promoting sleep onset, sleep • perception and sleep quality when taken before bedtime. It can also • be taken during the day to reduce anxiety. It must be used regularly • for two to three weeks to have an effect, and the therapeutic dose will • vary with the type of preparation (extract, tincture or tea). The quality • of the product is very important in maximizing chances for benefit • without side effects.• Herbs such as hops, chamomile, lemon balm, skullcap, indian pipe • and snakeroot are sometimes used to improve sleep, but no research • has been done to prove their effectiveness.• Melatonin is a hormone secreted by the pineal gland that can help • with falling asleep by resetting the circadian rhythm (body clock). It • can be very effective for people who typically experience sleep phase • disturbances (for example, older individuals, teenagers, travelers and • shift workers).• Rozerem (ramelteon) is a melatonin receptor site medication that • helps improve melatonin absorption for falling asleep.• Nutritional supplements that may improve sleep include the amino • acids tryptophan and 5-hydroxytryptophan (5-HTP), and • magnesium in people More information is available through • databases who have low magnesium levels. Please note: Vitamin K is not • recommended as it can interfere with blood coagulation for patients on blood • thinners such as warfarin/Coumadin.

Manipulative therapies• Interventions like massage, osteopathy, chiropractic medicine, • craniosacral therapy and reflexology have been shown to improve • sleep in some patients.

Energy therapies• While effects are difficult to measure, many people have reported • improved sleep with:

- qigong (a traditional Chinese practice of aligning breath, movement - and awareness)- Reiki (energy healing through hands), and- therapeutic touch (directing the flow of energy that helps patients - heal themselves).

• Tai chi has shown promising results for improving sleep quality, onset, • duration, efficiency and disturbances, and decreasing daytime • sleepiness.• Light therapy uses exposure to bright light to stabilize or shift the • body clock to help people get up or go to bed earlier.

Exploring CAM: things to consider• Let your regular healthcare provider know you are exploring CAM • therapies. The best model for your care is integrative, where everyone • works together.• Be sure to consult with a CAM practitioner when trying any new • therapy. A CAM professional can help ensure your treatment is safe • and help you find the amount and duration of therapy that works • best for you.• Interventions like music or aromatherapy are optimal at therapeutic • doses. If they are used too often or too intensely, the body can become • desensitized. • CAM therapies typically take weeks or months of use before people • experience results; continued treatment is usually required for • maintenance. • No one therapy works for everyone. What works for you is important.• Many CAM interventions are expensive and not covered by health • insurance; others, like chiropractic medicine and acupuncture, are • usually covered. Some, like prayer and meditation, can be explored at • little or no cost.• If your physician is dismissive of your WED/RLS symptoms or your • desire to explore CAM, you should consider going to a different • physician. WED/RLS is a serious condition and you have the right to • respectful, responsive care as you pursue both CAM and conventional • therapies.

To learn more about CAM, visit www.nccam.nih.gov.

Norma Cuellar, DSN, RN, FAAN, is professor of nursingat the University of Alabama Capstone College of Nursing.Dr. Cuellar conducted an NIH-sponsored postdoctoralstudy in CAM at the University of Virginia. She hascompleted a variety of research projects related to sleep,CAM, WED/RLS and the older adult. She has publishedover 40 articles related to WED/RLS, sleep, complementaryand alternative medicine and gerontology, and has presented nationally and internationally. She also serves as editor of “Complementary Corner” inNightWalkers newsletter.


Member Spotlight

Charlotte Dunn isn’t writing poetry these days. Writing is“strictly a three a.m. activity,” she says, and for the past severalyears she’s been sleeping through the night.

This wasn’t always the case. Over a forty-year course of livingwith WED/RLS, Charlotte has spent countless nights writingverse as she struggled with middle-of-the-night anguish whenshe had no medication. Charlotte would sit down at thecomputer and type her thoughts. Her doctor said the brightscreen would keep her awake, but Charlotte did it anyway.Writing helped calm her legs and put order to her thoughts.

“Most of the poems end up thinking about the hour ofdesperation when there’s just nothing. You’re not going to getany sleep, and you’ve got to get through the night and face thenext day. You begin to feel a little desperate about it.”

Charlotte began experiencing WED/RLS symptoms in the1960s, when the disease was little known. After consulting witha neurologist, psychiatrist and physician who weren’t able tohelp her, she finally found hope in a conversation with herchiropractor. He’d heard about a medication for Parkinson’sdisease that was also used for WED/RLS: Sinemet. Charlottetold her physician about the medication, and they decided totry it.

“I took a pill, went to bed, and when I woke up, I looked at theclock and thought, oh my, the clock is wrong – something iswrong.” Charlotte had slept for five hours and didn’t believe it.“It was wonderful. I hadn’t had that in a long time.”

Over the coming years, Charlotte’s treatment took a windingpath familiar to many who have WED/RLS. Sinemet eventuallylost its effectiveness, so she switched to Mirapex. When Mirapexstopped working for her years later, she moved on to ropinirole.She still experiences mild symptoms, but they don’t bother herat night.

“We do want a cure, andwe must say that. Nobodyshould have to strugglewith this.”

Despite her medical challenge,Charlotte has lived life to thefullest. She met her husband,Tony, while they were bothserving on active duty in theU.S. Navy. She earned abachelor’s degree in liberalstudies from San Diego StateUniversity. She and Tony raisedthree children, and have twograndchildren and one great-grandchild. They have traveledextensively and climbedmountains, including thesummit of Mt. Whitney. Nowretired, they live with their cat, Tabby, on a hill overlooking SanDiego. Charlotte is compiling her poems into a book entitledNightwatch, which she plans to publish later this year.

None of this would have happened, she says, if she hadn’t founda medication for WED/RLS. “I wouldn’t have lived another sixmonths. An accident or something would have gone wrong.Lack of sleep can be so devastating. There’s no end to it, and themore you want to sleep, the worse it gets – to the point you’re insuch a state of confusion, you don’t make any sense.”

Charlotte urges others living with WED/RLS to keep lookingfor a medication that will help. Find a good doctor. Keepsearching. Don’t settle for less. “We do want a cure, and wemust say that. Nobody should have to struggle with this.”

• • • •

Orion

And so when earth and sun have diedAnd all of this is gone away,Then let us to Orion flyTo live another day.

For in that warriors flaming swordNew stars are being born,And on some distant newborn star,Together,We will see another morn.

– Charlotte Dunn

Poetry or Sleep?Charlotte Dunn Shares Her Story

Charloette Dunn

Ask the DoctorQ: I have had severe restless legs for many years and take

Mirapex for them. The only thing that seems to help isBlue-Emu that comes in a can or jar. When I come downwith the flu or some other illness, the WED/RLSdisappears. Since November 10, I have had the virus thatturns into bronchitis. I was on three different sets ofantibiotics, inhalers, etc. During a very rough time(about five to six weeks) I had practically no WED/RLS.It was a real pleasure to just lie in bed and relax. Nowthat my bronchitis is getting better, the WED/RLS hascome back severely. I have brought this up to a fewdoctors before and no one had an answer.

A: I have had similar cases of patients who reported to me thatfever improves symptoms. I have no insight about themechanism; however we should take in account thatWED/RLS symptoms worsen during the descending phase ofbody temperature and improve during the ascending phase. Mauro Manconi, MD, PhD

WED/RLS symptoms are known to improve with fever sothat might explain some of the improvement noted withyour flu. However, it does not account for the several weeksof relief that you experienced. We also do not understandwhy fever or flu-like illnesses help WED/RLS symptoms.Mark Buchfuhrer, MD, FRCP(C), FCCP

Q: I have severe neuropathy in my left hand and mildneuropathy in my feet and right hand. Newsprint,colored brochures, dust, fragrances, garment dyes – justabout anything except plain water – bothers my hand.Over the holidays, I had on a pair of regular blue jeansthat had been washed a couple of times and my right leg(which is my WED/RLS leg) bothered me all day. Assoon as I took off the blue jeans that evening, my legstopped bothering me. I’ve also been aware that whenmy hand is bothering me at night, so does my leg and Ihave to wash my hands to relieve the leg. I amwondering if neuropathy and WED/RLS could berelated. Over the years I have really abused my right legto get relief from WED/RLS. I don’t take any of theprescribed medications to relieve the WED/RLSsymptoms, but do take a 10 mg buspirone everyday mostly for depression during this season of the yearand to quell the symptoms as needed.

A: There is a quite solid relationship between neuropathy andWED/RLS. Neuropathy seems to be a risk factor forWED/RLS, especially axonal and small fiber neuropathy. Mauro Manconi, MD, PhD

Q: I’m told patients who have had a stroke can still sufferfrom WED/RLS. If they are aphasic, how do we know?How about Alzheimer’s? Is their restlessness related toWED/RLS? Is that why they “act out”? How about brain

tumors? Mentally ill people? Have we ignored theirsuffering or misdiagnosed the symptoms?

A: For patients who are cognitively impaired, or children,there are specific diagnostic criteria that have beenproposed to assess for WED/RLS with the help of a familymember or caregiver of the patient. Further, in particularcases it might be helpful to perform a polysomnogram(PSG) study looking for periodic limb movements of sleepand initial insomnia. Mauro Manconi, MD, PhD

Q: I have struggled with WED/RLS for over 15 years. Ibegan taking pramipexole (Mirapex) for four years, buthad to discontinue it due to impulse control disorders(ICDs), mainly gambling. I had a very difficult timegetting completely off of Mirapex due to dopamineagonist withdrawal syndrome (DAWS). Recently, I wasable to transition to L-dopa, then to Requip due to whatI believe was augmentation. Now I may be experiencingaugmentation with the Requip at 1 mg nightly. I amconcerned about the ICDs returning. I rememberreading a study showing that the incidence of ICDs wasgreatest with Mirapex, but I know that all dopamineagonists work on the same nerve centers and carrysimilar side effects. Are there are any studies specific toRequip and ICDs?

A: There are no studies adequately comparing the risk of ICDswith pramipexole compared to ropinirole. Both drugs workthe same way, so there is certainly a risk of developingICDs on ropinirole if they occurred with pramipexole.However, there are anecdotes of patients who developed anICD on one drug but not the other. If ropinirole is to betried in this situation, it should be used in the lowesteffective dose with careful monitoring for the firstdevelopment of an ICD. In these circumstances, it may besafer to try a different class of drug, for instance an alpha-2-delta ligand such as gabapentin or pregabalin.Michael H. Silber, MBChB

Q: I am a 74-year-old female who has had moderateWED/RLS for many years. In the last two years it hasworsened, and I have been taking ropinirole. Dr. MarkBuchfuhrer, in the last NightWalkers, in answer to aquestion, said one should discontinue dopamineagonists once significant augmentation sets in. Myquestion is: isn’t augmentation a given with ropinirole?Are there sufferers who take the same dose for years withno augmentation?

A: In different studies, augmentation has been shown to occurin about 45–70 percent of patients taking dopamineagonists for 10 years. Therefore, there are definitely somepatients who do not seem to develop augmentation, but wedo not understand why these patients are protected. Michael H. Silber, MBChB


Bedtime Stories

I’ve suffered from WED/RLS for the last 15 years. I’m 55, livingin California. I have been trying different things to stop it or atleast get some relief. I probably don’t have it as bad as many, butI am waking up 100 times an hour, finally falling into REMsleep about 4:00 a.m. I have found something that works forme. I am speaking of medical marijuana. I don’t know if itmakes me sleep more deeply, counteracts the WED/RLS, orwhat, but I get great relief from using it. Here in California,there are many methods of delivery: smoking, eating, capsulesand others. – Anonymous

Every night for me is a painful challenge. Not only pain, but Idon’t sleep (two to three hours). My worst night was a fewmonths ago. The physical pain was off the charts and themental pain was driving me crazy – like itchy poison floodingthrough my veins. Thank god I have a backup: liquid Lortab.When I feel I’m going crazy, I take the liquid because it worksso fast!– A.L.

In reading letters from WED/RLS sufferers who take Ultram, Itoo would like to say how great it is. I have lupus and takePlaquenil; my doctor gave me Ultram for pain. I take one atnight. I still have interrupted sleep – not with WED/RLS, butjust with insomnia – possibly from the drug. But the thrashingand tearing my nightclothes has stopped. We are full-timeRVers, so I don’t have much room to walk at night. My onlyconcern is that Ultram is addictive – how long can we beWED/RLS free? Right now, it’s nice to lay still. I’ve hadWED/RLS for 10 years. My father used to call it chill blains!!– Mary A.

Editor’s note: Although Ultram (generic name is tramadol) can beaddictive (actually tolerance/dependence) when taken in very highdoses, when used in the lower doses that are generally needed fortreating WED/RLS, this problem should be very unlikely to occur.

I find the artificial sweetener aspartame aggravates mycondition.– F. L.

Chocolate, caffeine and alcohol are triggers for me, so I don’tuse them. I have had WED/RLS since I was nine and I’m now65 years old. Over the years it has become worse. Sometimesduring the night I can be desperate, afraid that I will dosomething to myself; it’s hell. The medicines tramadol, Sifrol

(pramipexole or Mirapex) andNeupro patches, have helped me,but augmentation alwaysoccurred after a couple ofmonths. I’m now on Sifrol and itworks for 24 hours. I can sleepfor four or five hours a night,and to me it’s heaven. I knowaugmentation can come again,but for now I’m enjoying it for aslong as it lasts. – C.D.

I have WED/RLS, and if I eat too many sugary foods duringthe day, my legs are really restless at night. If I must get upduring the night, there is something I do to get my mind off myrestless legs. I make earrings, and after making two or three pair,I can go back to bed with calm legs.– Lena K.

Turkey, chicken or processed food seems to affect me. Thetryptophan in the poultry is supposed to help you sleep, but itwill flare up your legs and make them worse.– Shelley M.

About a month ago my doctor determined that I wasexperiencing augmentation with my current WED/RLSmedication and decided it was time to try the patch. I promptlylost five nights of sleep and went through misery. Some of theworst episodes of WED/RLS I’ve had in my life. Finally, wedetermined that it was some other medication that was theproblem and I went back on a different dosage of what I hadbeen on and changed some of my other meds. After a month Iam now sleeping again. The info with the Neupro patch says aside effect is worse WED/RLS. I guess I’m one of the few forwhom that is true.– Ed M.

Editor’s note: Although it is possible that Neupro (or any otherWED/RLS drug) may worsen WED/RLS symptoms, this is actuallya very uncommon reaction. It is more likely that stopping higherdoses of this patient’s current dopamine agonist caused theworsening. The starting dose of Neupro (1 mg) is often notadequate to fully replace higher doses of the older, short-actingdopamine agonists, and higher doses of Neupro may have been moresuccessful.

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 everyonewith WED/RLS. It is important to talk to your healthcare provider and investigate concerns such as safety, efficacyand cost before making any changes to your treatment regimen. Stories may be altered for length or clarity.



Willis-Ekbom Disease Foundation

1530 Greenview Dr SW Suite 210Rochester, MN 55902Phone: 507-287-6465Fax: [email protected]

Canada

The Canadian RLS Foundation acceptsdonations and sends tax receipts forCanadian citizens. Please send to:RLS Foundation, Inc.1581-H Hillside Ave, Suite #409Victoria, BC V8T 2C1

In Canada, our nonprofit tax identification number is: 88018 7109 RR0001.

Living with WED/RLS

Ever since I was a child, I knew my mother was walking about thehouse during the night because as she said she had “jumpy legs.”This meant that we children sometimes had to be quiet during theday, when, truly exhausted, she had to take a nap. At the time, itnever occurred to me that this condition might be in store for meas well. What I did know was that there was nothing she could doabout it; the doctors she visited invariably said to her that shewould have to live with it.

During pregnancy, I had terrible restless legs. But the symptomsdisappeared, more or less, after my pregnancy. I did havecomplaints, but they were very mild, so I did not think twice aboutthem until I was about 50 years of age. My symptoms becameworse and worse, and my sleep was disturbed very badly. I couldnot, however, take a nap during the day because I had a full-timeand demanding job. So I struggled on, became very tired, and myfamily suffered with the ever-tired wife/mother. I asked my generalpractitioner about this, and he, too, said that there was nothing wecould do. Later on, a different doctor gave me hydroquinine,which, as we now know, did not do anything either.

Then one day, quite by chance, my eye fell upon a tinyadvertisement announcing the launch of the restless legs patientgroup. This was in 1999. I knew nothing about the disease or thename, but I decided to go there and see what other peopleexperienced. I expected to meet with a small group of people whowould be moaning that their legs were so bad, and then I’d gohome because there was nothing we could do. However, when Ientered the room there were at least 80 people. A young neurologistexplained in very clear terms what we were suffering from, that wewere not alone, what might be causing the symptoms, and eventhat there might be possibilities for suppressing those horriblesymptoms. I could not believe what I was hearing and immediatelyand very spontaneously decided I would become one of thevolunteers and help the people who had started this initiative.

Now, 14 years later, I look back on the period behind me. A lot hasbeen achieved, including in my country, the Netherlands. But Ithought in 1999 that we would have reached all doctors and patientswithin 10 years, and that everyone would know what WED/RLS isand how bad it can be. That has proved to be an illusion.

The Dutch RLS patient group has grown to some 2,000 membersto date, which we are quite proud of. We have a quarterlynewsletter, many brochures and a lively webmail service. And weorganize informational meetings throughout our country. After allthese years, the meetings still attract hundreds of people who sufferbut did not know why and that they are not alone. Just like me.

So the battle continues. Wecontinue to inform people aboutthe disease. We try to get as muchpublicity as we can. We are incontact with several umbrellaorganizations for movementdisorders, sleep disorders andneurological illness in this country.And we try to convince the Dutchfamily doctors that WED/RLS isnot an invented disease.Unfortunately the disease-mongering movement has hadquite an impact here, and westruggle to overcome the wrongimage it has created.

The Road to AwarenessBy Joke Jaarsma

Joke JaarsmaVice President, Stichting Restless LegsPresident, European Alliance forRestless Legs Syndrome


Call for Entries: Youth Art ContestThe WED Foundation is pleased to announce its second Youth Initiative Art Contest, open to children age 17 and under. Entriescan be a drawing or painting and must depict Willis-Ekbom disease (restless legs syndrome). To view sample entries from the lastcontest or to obtain additional entry forms, visit www.willis-ekbom.org/youth.

PrizesWinning entries will be awarded VISA gift card prizes in three age categories:

First place for ages 8–12 and ages 13–17: $50 VISA gift cardSecond place for ages 8–12 and ages 13–17: $25 VISA gift cardFirst place for ages 4–7: $50 VISA gift cardSecond place for ages 4–7: $25 VISA gift card

Deadline for submissions: July 1, 2013.

Please complete the following:

Child’s first name: ____________________________________________________________________Age: __________Brief description of drawing: ________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

The following information is for internal use only and will not be made public.

Parent or guardian name: ____________________________________________________________________Mailing address: ____________________________________________________________________City/State/Zip code: ____________________________________________________________________

By participating in this contest, I am transferring copyright to the WED Foundation. I grant permission to the WED Foundation to useand publicize the attached artwork in both print and web versions. I understand that the artist’s first name, age and home state will bepublished with artwork.

Parent or guardian signature ____________________________________________________________________


WED Foundation Youth Art Contest

What do your “restless legs” feel like? Draw or paint your picture below.

Please send submission by July 1, 2013, to:WED Foundation1530 Greenview Dr SW Suite 210Rochester, MN 55902Phone: [email protected]

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 LegsSyndrome (RLS). (©2011)Pregnancy and RLS: Vital Considerations in Treating a Pregnant Patient who has RestlessLegs Syndrome(RLS). (©2011)Surgery and RLS: Special Considerations for the Surgical Team when the Patient has Restless Legs Syndrome(RLS). (©2010)Medical Bulletin: This material is intended for medical professionals and contains the latest diagnosis and treatment information for WED/RLS. (©2010) Currently out of stock.

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/RLSUnderstanding Iron A Quick Guide to Living with WED/RLSMedications for WED/RLS Understanding Drug ActionDrug Holidays and WED/RLS WED Foundation Research Summary


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 where it is needed most I would like to make a recurring monthly gift of $________ for research where it is needed most

Start date: __________ End date: __________ 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.)

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1530 Greenview Dr SW Suite 210

Rochester, MN 55902

Phone: 507-287-6465

Fax: 507-287-6312

[email protected]

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formerly known as the RLS Foundation

Is Willis-EkbomDisease Real?You bet it is! I started dreading every day because Iknew that by evening I would have this burningsensation in my legs that just wouldn’t quit. It wouldonly stop if I got up and walked around – and ofcourse, I couldn’t sleep. Fortunately, I found theWillis-Ekbom Disease Foundation and learned whattype of doctor to see and what help to get. Now, I amso relieved!

To learn more about Willis-Ekbom disease (alsoknown as restless legs syndrome, or WED/RLS),visit willis-ekbom.org.

Documents

NIGHTWALKERS - Restless Legs Syndrome · The program will benefit patients and their families, through: ... be put to good work toward improving care for people living with WED/RLS