nightwalkers - Restless Legs Syndrome Foundation

Transcription

A publication of the Restless Legs Syndrome Foundation
I n s e a r c h o f a g o o d n i g h t’ s s l e e p
NIGHTWALKERS
Madison Regional Meeting
It was an unusually warm and sunny Sunday morning in
October for the Madison Regional Meeting in Wisconsin.
RLS Foundation staff and volunteers arrived early and
prepared a conference room at the Alliant Energy Center of
Dane County. When the welcome address began at one
o’clock, the room was nearly filled. The program began with
Dr. Phil Becker giving an introduction to the disorder most
in the audience deal with on a daily basis. Dr. Becker’s
introduction segued into the presentation on treatment
options. Knowledgeable Board Chair-Elect, Jacci Bainbridge,
PharmD, provided detailed information on the pros and
cons of many pharmaceutical drugs on the market.
After a short break, the audience resumed to hear an
inspirational and humorous talk on learning to be resilient
and keeping laughter in your life from motivational speaker
and author, Vicki Snyder. The audience participated by
performing laughter exercises, completing a quiz on
resiliency, and informing those around them what some of
the positives in their lives were. The room roared with
laughter and everyone left with new ideas and motivation.
“There’s something to be thankful every single day,” Vicki
expressed. “Living with a chronic condition doesn’t mean life
has to be negative. I believe in laughing as much as possible.
It truly is the best medicine.”
At the conclusion of the meeting, questions were answered
and support was offered via the panel discussion. Audience
members were able to ask specific questions to RLS experts
and everyone walked away with valuable knowledge.
The audience members didn’t just leave the Madison
Regional Meeting with a folder full of new information; they
also left with a changed perspective, new friendships, and
support. In just one afternoon, we were able to reach out and
connect through experiences. We hope you’ll join us at the
next RLS Regional Patient Meeting.
continued on page 5
FALL 2010
Inside NightWalkers
Support Group Spotlight.........8
In the News.............................9
Support Groups.....................10
Ask the Doctor.......................15
Bedtime Stories......................19
RLS & Chinese
Medicine
Book Excerpt: 100 Questions
& Answers about RLS
Medications for RLS
page 2
page 4
page 17
www.rls.org
RLS Foundation News
Restless Legs Syndrome and Chinese Medicine
By: Xue Yan, MD
Xue Yan, MD, spent six months between March 2010 through
September 2010 studying and doing research in the Sleep
Medicine Division of the Neurology Department of Vanderbilt
University Medical Center as a visitor under the State Scholarship
Fund supported by the China Scholarship Council (CSC).
The Theory of Traditional Chinese Medicine
With a long and remarkable 2,000-3,000 year history,
Traditional Chinese Medicine (TCM) has formed a unique
system to diagnose and cure illness. In TCM, the
understanding of the human body is based on the holistic
understanding of the universe. The integrity of the human
body and the relationship between the body and the
environment are emphasized. The major theories of TCM
include the Yin-yang, the Five Elements, and Zang Fu organ
theory. Chinese philosophy uses yin and yang to represent a
wider range of opposite properties in the universe. The system
of Five Elements (wood, fire, earth, metal, and water) is used
for describing interactions and relationships between
phenomena. Zang Fu, is a concept that describes the
functions of the organs of the body and the interactions that
occur between them.
RLS in TCM Theory
According to TCM, the external cause of RLS is initiated by
external wind, external cold, and external damp, which then
result in the block of meridian (channels along which the
energy, or Qi, of the psychophysical system is considered to
flow); Qi (vital force providing the energy needed for organs
to perform their physiological functions); and blood. The
internal cause of RLS is concluded as deficiency of liver and
kidney, and deficiency of Qi and blood. It is interesting that
in Western medicine, two of these concepts were also
recognized as pathogenetic to RLS, mainly the role of renal
failure and anemia.
The excessive movements of the legs can be interpreted as
being a manifestation of internal wind, a condition that is
associated with liver blood deficiency. The strange leg
sensations described are attributed to blood deficiency or
blood stasis. According to Western medicine, iron and folate
deficiency, as one main cause of RLS, would be a clear
indication of blood deficiency. The fact that the disorder
occurs more notably at night and disturbs sleep, suggests the
Wei Qi (defensive energy) that circulates at the surface of the
body during the day fails to fully return to the interior at
night -- a problem that is usually attributed to a fluid
deficiency of the internal organs, such as yin deficiency or
blood deficiency of the liver.
2 NightWalkers
The fact the symptoms are
primarily in the legs is said
to be a deficiency of the
liver-kidney system. The
liver-kidney system is said
to deteriorate as we age, so
this relationship may also
explain the prevalence of
RLS among the elderly.
Sleep disturbance, as a
common aspect of the
disorder, may implicate
deficiency of the heart. This
could explain the current
Western concept that RLS
is linked to cardiovascular
disease. Also, kidney essence is
related to familial conditions,
and there appears to be a
genetic link to RLS.
Chinese Herbs in Treating RLS
CMT primarily involves tonifying the deficiencies and
promoting blood circulation. The deficiency syndrome appears
to mainly involve the liver and kidney (possibly also the heart),
and the stasis mainly involves the blood and Qi. Herbal
remedies can be recommended to relieve the uncomfortable
sensations of RLS. Some of these therapies, most of which are
herbs, are as follows*: coix seed, atractylodes lancea and rhizoma
zingiberis recens for dispelling exopathogens; Chinese angelica
root and white peony root for nourishing blood of the liver and
heart; rehmannia, cornus officinalis and semen ziziphi spinosae
for nourishing the liver and kidney; astragalus root and radix
codonopsis for reinforcing Qi; angelicae radix, caulis spatholobi
and achyranthes for nourishing blood and promoting blood
circulation. Achyranthes also have the effect of directing the
blood flow to the lower body. According to modern research,
angelicae radix can affect dopamine, y-aminobutyric acid
(GABA) and serotonin receptors. Chaenomeles fruit can release
the leg muscles and tendons of the limbs; the traditional pair
of white peony root and licorice root are typically used to reduce
uncomfortable sensations, also in deficiency syndromes. White
peony root has also been identified to have the effect of
vasodilating, improving distal circulation of the body,
regulating, and improving the blood circulation of the limbs.
It is interesting that vasodilators were amongst the agents
recommended by Ekbom for the treatment of RLS in 1960.
continued on page 16
www.rls.org
From the Director’s Desk
NightWalkers is the official
publication of the Restless Legs
Syndrome Foundation
Board of Directors
Janice E. Hoffmann, Chair
Roberta Kittredge, Vice Chair
Jacquelyn Bainbridge, PharmD
Norean V. Dreier, Treasurer
Diana F. Bartlett
Carol Ciluffo
John Dzienkowski
Régis Langelier, PhD
Carolyn Mohn
Kathy Page
Matthew A. Picchietti
Linda Vedders
Robert (Bob) H. Waterman, Jr., Chair Emeritus
Medical Advisory Board
Christopher J. Earley, MD, PhD, Chair
Phillip M. Becker, MD
Mark J. Buchfuhrer, MD, FRCP(c), FCCP
Jeffrey S. Durmer, MD, PhD
Brigit Högl, MD
Daniel Picchietti, MD
Michael H. Silber, MB, ChB
Penny Tenzer, MD
Mary L. Wagner, MS, PharmD
Arthur S. Walters, MD
John W. Winkelman, MD, PhD
Scientific Advisory Board
James R. Connor, PhD, Chair
Michael Aschner, PhD
Michael Brownstein, MD, PhD
Marie-Francoise Chesselet, MD, PhD
Christopher J. Earley, MD, PhD
Emmanuel J. Mignot, MD, PhD
Jacques Montplaisir, MD, PhD, CRCPc
Pamela Pierce-Palmer, MD, PhD
Neil Risch, PhD
Joseph S. Takahashi, PhD
George Uhl, MD, PhD
Executive Director
Georgianna Bell
NightWalkers is published in the winter,
spring, summer, and fall. “Ask the
Doctor” questions, “Bedtime Stories,”
address changes, contributions, and
membership inquiries should be sent to:
NightWalkers, RLS Foundation
1610 14th St NW Suite 300
Rochester, MN 55901
The RLS Foundation does not endorse or
sponsor any products or services.
©2010 Restless Legs Syndrome Foundation
Editor: Gina Depuydt
Medical Editor: Mark Buchfuhrer, MD,
FRCP(C), FCCP
Warning and Disclaimer
Persons suspecting that they may have RLS
should consult a qualified healthcare
provider. Literature that is distributed by
the Restless Legs Syndrome Foundation,
including this newsletter, is offered for
information purposes only and should
not be considered a substitute for the
advice of a healthcare provider.
www.rls.org
Several months ago the RLS Foundation issued a CALL TO ACTION to our
members of the RLS community. The situation was urgent: the Food and
Drug Administration (FDA) had failed to approve the gabapentin pro-drug
Horizant for the treatment of RLS. Your response to the FDA Division of
Neurology Products was – in a word – remarkable! Many of you who wrote
to Dr. Russell Katz at the Division of Neurology Products sent me copies of
your letters. Below are just a handful of excerpts from heartfelt letters that
were sent to the FDA.
Georgianna Bell
Executive Director, RLS Foundation
“I am an 80-year-old man who has suffered with RLS for about ten years.
Gabapentin was prescribed to me eight years ago. It relieved my symptoms
enough for me to get a good night’s sleep. I don’t understand how you can summarily dismiss
approval of gabapentin because RLS is not a life threatening condition. Have you considered the
suffering caused by RLS?” – William
“I have lived with RLS for thirty years. Please do not diminish or dismiss the suffering and
disruption experienced by RLS suffers. Poorly treated RLS has a serious impact on victims’ lives.
Please give serious consideration to new medications and treatments. Evaluate them as you would
any new drug that might relive a serious disease.” – Mary
“I am 84-years-old and have had RLS for forty years. I wish I had kept a list of the many drugs
that were prescribed to me over the years – that didn’t work. RLS might not cause death, but it can
cause suicides because it is so frustrating. I strongly urge you to approve the new medication for the
treatment of moderate to severe RLS.” – Lillian
In addition to the many letters sent to the FDA, the RLS Foundation (in collaboration with
the International RLS Study Group) contacted the FDA to learn more about how we could
educate and influence RLS-related decisions. I am excited to share our progress with you.
After a productive discussion with the FDA Office of Special Health Issues, the RLS
Foundation was invited to nominate two to three individuals to serve as Patient
Representatives who will provide active participation in formatting FDA regulatory policy for
either medical products under review or Advisory Committees. In addition, we are in the early
stages of planning a workshop with three goals: to more clearly define RLS as a disease; to
study factors that worsen the disease (e.g. use of dopamine agonists that cause symptom
worsening augmentation); and to study factors that improve the disease (e.g. iron therapy).
Our goal for this event will be to involve FDA staff in the planning and to promote common
understanding of the complex nature of RLS, as well as to hopefully identify new treatment
modalities that will alter its course and significantly improve outcomes.
Sincerely,
Georgianna Bell
Executive Director
Fall 2010 3
Book Excerpt
Book Excerpt: 100 Questions & Answers About
Restless Legs Syndrome
While the RLS Foundation does not endorse products, we try
to share what is available to help our members with ideas,
encouragement, and support. This book is designed to
provide education on RLS.
Whether you are a newly diagnosed patient or a
loved one of someone with RLS, this book
offers essential information and comfort. 100
Questions & Answers About Restless Legs
Syndrome by Sudhansu Chokroverty, MD,
provides authoritative, practical answers to the
most common questions asked by patients. This
easy-to-read book is a complete guide to
understanding symptoms, diagnosis, treatment,
post-treatment quality of life, and much more.
Including actual commentary from patients,
100 Questions & Answers About Restless Legs
Syndrome is a resource for anyone coping with
the physical and emotional turmoil caused by
this condition.
Sudhansu Chokroverty, MD, FRCP, FACP, is currently
Co-Chair of Neurology for Clinical Neurophysiology and
Sleep Medicine, and Program Director of Clinical
Foundation Website Update
The RLS Foundation’s website is a great place to keep
up with what is current on RLS. The latest news is
posted on the front page of our website at www.rls.org.
We also have a “Youth Initiative” webpage. Do you
need more information on pediatric RLS? Wondering
where your teenager can find support? Visit
www.rls.org/youth today.
Remember, by joining our “Online Community” with
your email address, you will become an RLS Efriend
and receive an email each month discussing breaking
news and announcements for the RLS community.
We know many of you do not have Internet access.
Rest assured that anything of importance will be
presented in NightWalkers. You will not miss out!
4 NightWalkers
Neurophysiology at the New Jersey Neuroscience Institute
at JFK Medical Center, Edison, NJ. He is also Professor of
Neuroscience at Seton Hall University School of Graduate
Medical Education, South Orange, NJ, and Clinical
Professor of Neurology at Robert Wood Johnson University
Medical School, New Brunswick, NJ.
100 Questions & Answers About Restless Legs
Syndrome is available at
http://www.jblearning.com.
_______________
“Today we know a great deal about RLS—but
not exactly what causes RLS or which part of the
nervous system, if any, is affected. It is generally
thought that RLS is a disorder arising from the
central nervous system (CNS), even though no
specific structural abnormality has been
identified. Is the problem located in the cerebral
hemisphere (the main part of the brain), the brain stem (the
lower part of the brain, which is connected to the main
portion of the brain and controls vital functions such as
circulation, respiration, and sleep), or the spinal cord…?”
How to Spot a Scam
The RLS Foundation recognizes there are many sites
online dealing with RLS. One quick and easy way to
spot a scam or untrustworthy site/product is by simply
reading carefully.
The neurological disorder nearly 10% of the American
population lives with night after night is restless LEGS
syndrome. There is no such disorder as restless LEG
syndrome. If you spot this error, do not trust the
information.
For more quick facts on restless legs syndrome, see the
RLS Foundation’s Frequently Asked Questions page at
www.rls.org/faq.
www.rls.org
RLS Foundation News
Madison Regional Meeting continued from page 1
Evaluations were gathered from meeting attendees and
included comments such as:
________________
“I enjoyed all of it. The meeting reinforced
some of what I knew and gave me
information on new medications coming.”
________________
“I liked the diverse speakers. I didn’t know
about so many medication side-effects.
It was great to close on a positive and
humorous note!”
________________
“The presentations were helpful. I learned
RLS is more prevalent than I thought and
that it’s more common in women.
________________
I’m going to share this information with
my general doctor. He needs a better
understanding of this disorder.”
Thank you to our speakers at the Madison Regional Meeting:
Philip M. Becker, M.D.
Dr. Becker is president and
founding partner of Sleep Medicine
Associates of Texas, P.A. Since 1987,
he has served as Medical Director
for the Sleep Medicine Institute at
Presbyterian Hospital of Dallas and
is a Clinical Professor in the
Department of Psychiatry at the
University of Texas Southwestern Medical Center at Dallas.
His primary specialty is in psychophysiologic functioning as
it relates to sleep disorders and research, having a special
interest in restless legs syndrome. He has published over 60
articles, chapters, and abstracts on a variety of sleep
disorders as a Medical Advisor to the RLS Foundation.
Jacquelyn L. Bainbridge, BSPharm,
PharmD, FCCP
Dr. Bainbridge received her doctorate
of pharmacy from the University of
Colorado School of Pharmacy, where
she subsequently completed a
specialty residency in neurology. She
currently serves as a Professor at the
University of Colorado Denver
School of Pharmacy, Department of Clinical Pharmacy and
Department of Neurology. She is a frequent lecturer on topics
of neurological and pharmacological interest in the areas of
restless legs syndrome, multiple sclerosis, epilepsy, migraine,
neuro-protection, chronic pain disorders, and movement
disorders. She is the Chair-Elect of the Board of Directors for
the RLS Foundation. Dr. Bainbridge has been elected as a
Fellow of the American College of Clinical Pharmacy (FCCP)
and won several student preceptor and teaching awards.
________________
“I met a lot of nice people who were very
friendly. The question and answer panel
was very interesting.”
________________
“What was the best part of the program?
Realizing I am not alone.”
www.rls.org
Vicki Snyder,
Motivational Speaker
Vicki Snyder has been the CEO
(Chief Enthusiasm Officer) of
Communication Connection for
the past 13 years. Ms. Snyder
blends her education as a human
resource professional and experience
in management and customer
service by offering upbeat, interactive keynote speeches and
workshops. Certified laughter leader, author, and speaker, Ms.
Snyder has been privileged to speak to organizations such as
Mayo Clinic (Minnesota & Arizona) and Kraft Foods.
Fall 2010 5
Complementary Corner
Can Melatonin Help Symptoms of RLS?
By: Dr. Norma Cuellar, RN
Melatonin is a hormone secreted by the pineal gland in the
brain. Everyone has melatonin in their bodies. Melatonin is
important in the “circadian pattern” of your sleep because it
controls your sleep and wake cycle. The normal cycle of
melatonin is much like any hormone in our body, having
peaks and valleys in a 24-hour period. The levels of
melatonin begin to rise from mid to late evening and remain
high throughout the night, resulting in sleep onset and
maintenance. In the morning, our body stops making
melatonin, and it causes us to wake up. This trigger to stop
making melatonin is initiated by light exposure including the
sun or bright lights. As we age, our bodies secrete less
melatonin, thereby causing problems related to our circadian
pattern of sleep.
Many studies have examined the effectiveness of taking
melatonin to help sleep. Few studies have identified that
melatonin actually helps with sleep. Melatonin is helpful in
resetting the circadian clock – or getting your body into a
natural rhythm of when to begin the rise of melatonin to
induce sleep. This is helpful, for example, in people who
travel throughout different time zones or work rotating
shifts. Melatonin has not been shown to be helpful with
insomnia or improving sleep onset.
How melatonin helps you fall sleep
Some people believe that when someone takes melatonin, a
placebo effect occurs. Does taking a pill to help you sleep in
fact make your brain believe that it is time to go to sleep?
This placebo effect is a very strong mechanism and has
explained many reasons why people get effects from different
medications.
In persons with RLS, melatonin levels are no different than
in people who do not have RLS.1 In fact, melatonin has been
shown to inhibit dopamine release. Taking melatonin may
restrain dopamine release, which may worsen symptoms of
RLS.
When melatonin was given to hamsters, over a 9-week
period, dopamine levels were decreased by 50%.2 In humans,
melatonin was found to worsen symptoms of RLS in the
evening and during the night.3 More recently, 8 persons with
RLS were found to have worsening symptoms of RLS after
receiving melatonin.4
Conclusion
Melatonin is a hormone and as any hormone, it should not
be taken lightly. Careful consideration should be made when
6 NightWalkers
starting this over-the-counter medication.
If you are taking melatonin and continue
to have symptoms of RLS, you may want
to speak to your physician to consider
tapering yourself off of the melatonin if
you take it on a daily basis. Since
melatonin is considered a hormone,
Dr. Norma Cuellar, RN
tapering yourself off of the medication
Assistant Professor, University of
over time is recommended. You should
Pennsylvania School of Nursing
keep a sleep diary as you change your
medication uses.
______________________________________________
1. Tribl, G., Waldhauser, F., Sycha, T., Auff, E. & Zeitlhofer, J. (2003).
Urinary 6-hydroxy-melatonin-sulfate excretion and circadian rhythm in
patients with RLS. Journal of Pineal Research, 35, 295-296.
2. Garcia-Borreguero, D., Serrano, C., Larrosa, O. & Granizo, J. (2004).
Circadian effects of dopaminergic treatment in RLS. Sleep Medicine, 5,
413-420.
3. Michaud, M., Dumont, M. Selmaoui, B., Paquet, J, Fantini, M. &
Montplaisir, J. (2004). Circadian rhythm of RLS: relationship with
biological markers. American Neurological Association, 55, 372-380.
4. Whittom, S., Dumont, M., Petit, D., Desautels, A., Adam, B., Lavigne,
G. & Montplaisir, J. (2010). Effects of melatonin and bright light
administration on motor and sensory symptoms of RLS. Sleep Medicine,
11, 351-355.
Restless Legs Syndrome Foundation
Rochester, MN 55901
Phone: 507-287-6465
Fax: 507-287-6312
Email: [email protected]
www.rls.org
CANADA
The Canadian RLS Foundation accepts donations and
sends tax receipts for Canadian citizens.
Please send to:
RLS Foundation, Inc.
1581-H Hillside Ave, Suite #409
Victoria, BC V8T 2C1
In Canada, our nonprofit tax identification
number is: 88018 7109 RR0001
www.rls.org
News from the Development Chair
When you visit www.rls.org, you are greeted with the following message: “The Restless Legs Syndrome
Foundation is a non-profit organization providing the latest information about RLS. The goals of the Foundation
are to increase awareness, improve treatments, and through research, find a cure for RLS, a condition which
severely affects the lives of millions of individuals.”
People come to the RLS Foundation’s website for one reason; they are looking for answers. Questions range over
many topics, but the underlying question is always – “How do I deal with RLS on a daily basis?” If you Google
“Restless Legs Syndrome” you get 669,000 results. “Restless Leg Syndrome” gets you 1,110,000 results while
“RLS” has 15,000,000. Whichever way you type it in, the rls.org website is either the top or second to the top
result. There is a reason for that. The RLS Foundation is the most reliable source available for information about
RLS. We can find answers about medications and effects, what might trigger our RLS, coping mechanisms,
current research, clinical trials, and where to find support in our area.
Kathy Page
2010 Development Committee Chair
I came to the website about 10 years ago with the same questions as everyone else. I was desperate for answers. And on my visit to
www.rls.org, I found more than answers; I found I was not alone. The discussion board introduced me to others who understood
what I was going through. Here were people who didn’t tune me out or tell me I was crazy when I tried to explain what I was
feeling. Here were people who needed me as much as I needed them.
Later, I was thrilled to be able to meet some of my new online friends at the second National Patient Meeting in Long Beach, CA in
2004. I met other friends by becoming involved with different committees and groups of the Foundation. These friends have
sustained me during some very dark hours. They have become some of the most important and cherished people in my life.
By becoming a member, “talking” on the discussion board, or volunteering your time to the Foundation, you will find that you are
not alone. At the very least, you will find an organization that cares about you as a person; that works diligently to get quality,
reliable information out to you; that keeps the Foundation goals always in the forefront.
It will take all of us, whether we know each other or not, to make the Foundation’s goals come to fruition. Those goals belong to all
of us. Never feel that what you have to offer is too small or not enough. Whatever you can do will make a difference. Remember,
there just might be someone else out there who would benefit in a connection with you as much as you with them.
Honor Roll
Kathy Page
2010 Development Committee Chair
A Memorial or Tribute Gift
Have you considered telling your family about the RLS
Foundation’s Memorial / Tribute option? These gifts will
provide support for an organization that you or your
honoree are passionate about while also letting them know
they are appreciated by you. With a memorial gift of any
denomination, the RLS Foundation offers a variety of
recognition options. Consider using a memorial or tribute
gift for a special occasion. Is there any better way to express
your support to the RLS Foundation while honoring those
who make a difference in your life?
www.rls.org
The RLS Foundation is sincerely grateful for the donations we have
received in memory and in honor of the following individuals*:
Honoraria
Charlie Saladin
Dorothy Field
Roberta Kittredge
John Morris
Rita Berlin
Brodie Lamb
M. Lynn McCracken
David Milne
Gloria Rotkin
Jonathan Titman
Memorials
John Bachman
Edna Birbaum
Betty Brown
Mary Corby
Curtis Hardin
Irwin Klein
Merlyn G. Law
Wava Mills
Adele Minervino
Dawn Parsons
Marion Perrault
Norman Perry
Alba Siciliano
Elizabeth “Bill” Tunison
Aubrey Workman
* Begining 7/17/2010 and ending 10/31/2010
Fall 2010 7
Support Group Spotlight
Questions with Charlene
Program Assistant Seema Dhindaw had a chance to talk with
RLS Support Group Leader, Charlene Travelstead. Charlene
leads the Lake Havasu RLS Support Group in Arizona. Her
Support Group’s contact information can be found on page 10.
Seema: Why did you become a Support Group Leader
(SGL) and how long have you been a SGL for the
Foundation?
Charlene: It was three years this past April. I had RLS really
bad and knew if I just touched one person, then I would
accomplish what I set out to do. I knew what it was like and
I wanted to be there for others living with RLS.
Seema: How has RLS impacted your life and the lives of
your loved ones?
Charlene: It has really made me realize just how many
people out there have this horrible disorder. And that makes
me want to be sure they are not alone. My husband has been
very supportive at times when my RLS was at its worse (and
that means he was supportive a lot). I wanted to be the
strong support for those who do not have that.
Seema: What has been some of your most memorable
moments or events as an SGL?
Charlene: The one most memorable moment was when
Lynne Kaiser, Support Group Leader for Dallas, Texas, spoke
at our Support Group Meeting in August 2009. The impact
she left with me and my Group is something we will never
forget. To this day, my Group still talks about that meeting.
If I could arrange another time for Lynne to hold another
joint meeting, I would do it in a heartbeat.
Seema: What do you hope to accomplish in your Support
Group in the next year? And what do you hope the
Foundation will be able to accomplish?
Charlene: My goal and hope is to get the awareness out to
more people who are suffering with RLS. My hope for the
Foundation is that they are able to fund the research that
will lead us all to a cure for RLS.
8 NightWalkers
Seema: What advice do
you have to other leaders
on effective strategies to
insure a successful
meeting?
Charlene: My advice is to
make sure you make the
meeting interesting for
both you and your
audience. If the topic
doesn’t interest you, it may
not interest an audience.
Also, always take time for
your people and let them Charlene Travelstead, RLS Support Group Leader
know this meeting is for
Lake Havasu, Arizona
them. The point of this
volunteer position is to support others. It is important to
make that the focus. Planning is also an important aspect. I
plan meetings three times a year – in April, August, and
December. I always contact my Support Group members at
least one month before each meeting. I am not the kind of
person to send them one notice. I send four or five
reminders. I realize that people are busy and they have
thanked me numerous times for these reminders.
Seema: What do you enjoy most about being a Support
Group Leader?
Charlene: I love the fact that I have helped people
understand I will always be there for them. I am ready with
the information and tools from the RLS Foundation to really
make a difference in lives. I am glad I can be that person to
others. My experience being a SGL has been the best thing
that I have done.
Help Us Make NightWalkers
Even Better
The Restless Legs Syndrome Foundation strives to ensure we
supply all interested individuals with the most reliable RLS
information available. Please send any suggestions,
corrections, or article ideas to us at [email protected].
Assist us in continuing to make NightWalkers personally
useful for all who live with RLS.
www.rls.org
In the News
Treat RLS with a Patch
Treatment of moderate to severe restless legs syndrome: 2year safety and efficacy of rotigotine transdermal patch. Högl
B, Oertel R, Kohnen R. BMC Neurology. September 2010.
Background: In the last few years researchers have
recommended using non-ergot dopamine agonists
(pramipexole, ropinirole, rotigotine, and sumanirole) as a firstline treatment for RLS. Rotigotine has been formulated as a
once-daily transdermal patch which has been used successfully
for Parkinson disease.
Research: The researchers in this study wanted to determine
how safe and how effective the rotigotine patch would be for
RLS. There were 295 patients included in this study. The
average age was 58 years old, and 66% were females. The
patients used the patch daily for two years. A total of 190
patients completed the study.
The results of this study showed that 34.5% of the patients
had skin reactions to the patch during the first year, but this
dropped to 16.4% the second year. The most common
medication side effects were nausea (0.9% of patients) and
fatigue (2.3% of patients). After using the patch for two years,
there was a significant improvement in the four RLS rating
scales used (the International Restless Legs Syndrome score,
RLS-6 scale, CGI score, and Quality of Life-RLS score), and
95% of the patients rated that after using the rotigotine patch
their symptoms improved either “much” or “very much”.
Bottom Line: The rotigotine patch, while not currently
available in the United States, appears to be a safe and effective
medication for the treatment of RLS.
New Questions: Will this medication be sold in the United
States again soon? (It was initially sold as Neupro in the
United States, but it was pulled off the market due to the
patch not delivering the medication evenly.)
Light Therapy for RLS
Use of near-infrared light to reduce symptoms associated
with restless legs syndrome in a woman: a case report.
Mitchell U. Journal of Medical Case Reports. August 2010.
Case: The researchers in the case report wanted to see if nearinfrared light (NIL) would be beneficial for RLS. NIL is
currently used to increase circulation and decrease pain in
people with neuropathy and has been used for wound healing
as well. In a previous study, three patients who were being
treated with NIL for their neuropathy reported that their RLS
had improved or was eliminated in the process. This prompted
the researchers to conduct this case study.
www.rls.org www.rls.org
A 69-year-old female with RLS for over 30 years had been
treated with many approved and off-label medications for her
symptoms for years without benefit. Her score on the Restless
Legs Syndrome Rating Scale (0-40 point scale) was 27 at
baseline. This score placed her in the “severe” category.
The patient was treated with NIL in 30-minute treatment
sessions three times a week for four weeks. After the end of
week one, her RLS Rating Scale was 14. After week two, her
score was down to two. After week three, her score was only
one. She reported that she was completely symptom-free at the
end of four weeks. However, her symptoms gradually returned
during week three post treatment. At week four post
treatment, her score was 15.
New Questions: Will there be a larger study to validate this
one case report? If this is beneficial, will home treatment be
available?
A Link Between RLS and ADHD
Restless legs syndrome as a possible predictor for psychiatric
disorders in parents of children with ADHD Steinlechner S,
Brüggemann N, Lencer R. European Archives of Psychiatry
and Clinical Neuroscience. September 2010.
Background: There is some research that suggests a link
between RLS and symptoms of Attention Deficit Hyperactivity
Disorder (ADHD). There is evidence that persons with
ADHD have a higher rate of other psychiatric diagnoses.
Evidence also suggests persons with RLS have higher rates of
psychiatric disorders (specifically depression and anxiety).
Research: Since both RLS and ADHD appear to have a
genetic component, the researchers in this study wanted to
evaluate parents of ADHD children to determine if the
parents had RLS and/or a psychiatric disorder. There were 37
parents (25 mothers and 12 fathers) of 26 children with
documented ADHD that were included in this study. All
parents and children were evaluated for RLS by three
movement disorder specialists, and those who were suspected
to have RLS had additional evaluation to rule out other
Glossary
In the News
CGI Score: The Clinical Global Impressions (CGI)
scale is a well-established research rating tool applicable
to all psychiatric disorders that can easily be used by
practicing clinicians.
Fall 2010 9
RLS Support Group Network
United States
ALABAMA
Contact: Provides timely
email and/or phone support
Shoals Area
Coretha Downs
256-247-3171
ARIZONA
Lake Havasu
Charlene Travelstead
928-453-9019
[email protected]
San Luis Obispo
Nancy Hair
805-545-7998
[email protected]
Southern California
Janis Lopes
714-633-0123
[email protected]
Morningside
Lola Scavo
714-256-5722
[email protected]
FLORIDA
Greater Gainesville Area
Carol Massey
352-485-1975
[email protected]
Gulf Coast
Louis Siegel, MD
941-536-0475
[email protected]
South Florida
Ira & Lillian Kaufman
561-883-5956
[email protected]
Contact:
Payson
Beverly Davis
928-468-6626
[email protected]
Contact:
South Sacramento
Amy Jaynes
916-682-5209
[email protected]
Spring Hill
Bill & Betty Kinahan
352-200-5440
[email protected]
Tucson Area
Jane Anderson
520-760-5039
[email protected]
Ventura Area
Dave Hennerman
805-766-2035
[email protected]
Tallahassee Area
Richard Wilson
850-443-5414
[email protected]
ARKANSAS
Contact:
Arkansas
John Graves
501-565-0341
[email protected]
COLORADO
Denver
Marge Fuhr
303-494-4913
[email protected]
Treasure Coast
Mary Lou Mennona
772-546-0750
[email protected]
Contact:
Ozark
Carol Mallard
870-481-5640
[email protected]
CALIFORNIA
Coachella Valley
Charmaigne Menn
760-285-2231
[email protected]
Marin County
Carol Galloway
415-459-1609
[email protected]
Monterey Bay
William Schramm
831-484-9058
[email protected]
Oakland
Ron Bishop
510-652-4667
[email protected]
Sacramento Area RLS Support
Group
Wesley Doak
[email protected]
877-895-8706
10 NightWalkers
Kay Hall
303-741-6190
[email protected]
CYBERSPACE
Affiliated Online Support Group
Jodi Judson
[email protected]
http://health.groups.yahoo.com/
group/rlssupport/
Donna McLellan
RLS_Insomnia_Support_
[email protected]
Online Discussion Board
Moderators
Ann Battenfield
[email protected]
Susan Burns
[email protected]
Betty Rankin
[email protected]
DELAWARE
Contact:
Greater New Castle/Kent
Betsy Lacinski
302-292-2687
[email protected]
Contact:
North Florida/South Georgia
Ed Murfin
904-573-8686
[email protected]
GEORGIA
Atlanta Area
Lorne Ebel
770-252-6776
[email protected]
HAWAII
Honolulu
Terry White
808-293-2955
[email protected]
ILLINOIS
Contact:
Central Illinois
Vernon Copeland
217-793-1703
[email protected]
Champaign-Urbana
Liz Jones
217-586-3851
[email protected]
Contact:
Southern Illinois
Gail Sesock
618-942-7143
[email protected]
INDIANA
Indianapolis Area
Diane Weissenberger
317-842-0764
[email protected]
IOWA
Central Iowa
Delila Roberts
515-597-2782
[email protected]
Elaine Tucker
515-733-2299
[email protected]
Contact:
Thelma Bradt
515-243-9553
[email protected]
KANSAS
Kansas City
Nora Walter
913-268-8879
[email protected]
South Central Kansas
John LaFever
316-773-5195
[email protected]
KENTUCKY
Restless in Southern Kentucky
Ken McKenney
877-700-4070
[email protected]
LOUISIANA
Capitol Area
Bonnie Hymel
504-469-4938
[email protected]
New Orleans
Bonnie Hymel
504-469-4938
[email protected]
MAINE
Southern Maine
Sally Breen
207-892-8391
[email protected]
Seacoast/Southern Maine
Chicago Southland
Régis Langelier, PhD
Bonnie Linder
[email protected] 207-351-5352
[email protected]
MARYLAND
Riderwood
Edie Range
301-586-0410
[email protected]
MASSACHUSETTS
Contact:
South Shore / Cape Cod and Islands
Sheila Connolly
508-790-7640
[email protected]
MICHIGAN
Metro Detroit
Michael Fiorillo
248-495-0141
[email protected]
Western Michigan
Neva Warsen
616-532-1698
[email protected]
MINNESOTA
Southern Minnesota
Norah Nainani
507-369-5308
[email protected]
MISSISSIPPI
Central Mississippi
Stan Phillips
601-267-0156
[email protected]
MISSOURI
Central Missouri
Kathy Page
660-368-2382
[email protected]
Mid-Missouri
Kay Day
573-897-4950
[email protected]
NEBRASKA
Greater Omaha
Linda Sieh
402-832-5177
[email protected]
NEVADA
Contact:
Las Vegas
Annie Flader
702-396-2812
[email protected]
NEW HAMPSHIRE
Contact:
Upper Valley Night Walkers
Gail Richens
603-643-2624
[email protected]
www.rls.org
RLS Support Group Network
Seacoast
Roberta Kittredge
603-926-9328
[email protected]
NEW JERSEY
Central New Jersey
Elizabeth Rochette
973-715-3868
[email protected]
South Jersey
Dot Quill
609-522-9401
[email protected]
NEW MEXICO
Rio Ranchos/Central NM
Meg Lindsey
505-715-0325
[email protected]
NEW YORK
Moving in Manhattan &
Long Island
Michael Haltman
[email protected]
516-338-7500
Contact:
Western NY
Lee Fischer
716-741-1560
[email protected]
OHIO
Mid Ohio
Shirley Thomas
304-485-7665
[email protected]
Maumee Valley
Patricia Phelps
419-877-5012
[email protected]
NE Ohio RLS Support Group
Mark Kaletta
[email protected]
216-337-6891
Southwestern Ohio
Jan Schneider
937-429-0620
[email protected]
OREGON
Lane County
Yvaughn Tompkins
541-682-5318
[email protected]
www.rls.org
Umpqua Valley
Lynn McCracken
541-672-3078
[email protected]
Valerie Boggs
541-817-4511
[email protected]
Portland
Delores Butterworth
360-892-5907
[email protected]
PENNSYLVANIA
Pittsburgh North
Alice Maxin
724-295-4117
[email protected]
Moscow Hopefuls
Ethel Rebar
570-842-3443
[email protected]
RHODE ISLAND
Southern Rhode Island
Lisa Cugini
401-322-3017
[email protected]
SOUTH CAROLINA
Contact:
Greater Charleston
Jack Kingston
843-388-8006
[email protected]
Midlands
June Metts
803-771-7809
[email protected]
TEXAS
Greater Dallas
Lynne Kaiser
972-422-0816
[email protected]
Greater Houston
Helen Simons
713-468-4192
[email protected]
Katy
Cyndi Moore
832-466-1200
[email protected]
VIRGINIA
Central Virginia
Pamela Hamilton-Stubbs, MD
804-273-9900
[email protected]
Contact:
Southwest Virginia
Annette Price
540-544-7454
[email protected]
Lynchburg Area
Patty Arthur
434-384-9013
[email protected]
Tidewater Area
Barbara Carlson
757-625-8391
[email protected]
WASHINGTON
Colfax Area
Linda Peterson
509-397-3834
[email protected]
Eau Claire
James Alf
715-514-1840
[email protected]
Sheboygan
Robert Pamenter
920-892-7373
[email protected]
West Bend
Karen Borresen
262-306-7373
[email protected]
Canada
ALBERTA
Calgary
Karen Shillingford
403-532-2534
[email protected]
Contact:
Seattle & Vicinity
Roger Winters
206-755-2526
[email protected]
BRITISH COLUMBIA
North Vancouver
Karen Norvell
604-792-8729
[email protected]
Skagit County
Charlotte Spada
360-293-7328
[email protected]
Vancouver Island
Marilyn Flynn
250-732-2777
[email protected]
Spokane
Teresa Kincaid
509-999-8234
[email protected]
Tacoma Area
Al Ruff
253-222-5232
[email protected]
Whidbey Island
Eva Fluesmeier
360-678-3693
[email protected]
WEST VIRGINIA
Contact:
Wetzel County
Janet Forni
304-455-2073
[email protected]
WISCONSIN
Plover Area
Jenelle Splinter
715-342-1281
[email protected]
South Central Wisconsin
Roger Backes
608-276-4002
[email protected]
ONTARIO
Contact:
Brantford
Gwen Howlett
519-753-1028
[email protected]
LOOKING FOR LEADERS
Whether you’ve recently
discovered that you have
RLS or have had RLS for
years, you can become a
Support Group Leader.
Many major cities, and
even entire states, lack a
Support Group to
provide advocacy,
education, and support
to the millions of people
who are living with RLS.
The RLS Foundation
provides assistance to you
in starting and
maintaining your group.
If you are considering
becoming a Leader, please
contact the RLS
Foundation by phone at
507-287-6465, by email
at [email protected],
or at www.rls.org.
Show your support of the
RLS Foundation by
purchasing RLS
merchandise. Check out
www.rls.org/store today!
Simcoe Muskoka RLS Support
Group
Janet Westall
[email protected]
705-721-0569
Contact:
Hamilton
Wendy Lowden
905-387-5392
[email protected]
London
Heather McMichael
[email protected]
Ottawa
Carol Connolly
819-459-2655
[email protected]
Toronto RLS Support Group
Armand Gilks
[email protected]
416-322-8000
Fall 2010 11
International
Restless Legs Groups
The following independent groups,
located outside of the U.S., work in
cooperation with the RLS Foundation.
AUSTRALIA
Warriewood - Sleep Disorders Australia
Beverly Yakich
02-9415-6300
[email protected]
AUSTRIA
Austrian Support Group
Waltraud Moldaschl
0664/2633100
[email protected]
FINLAND
Helsinki - Levottomat jalat-RLSry
Markku Partinen, MD, PhD
[email protected]
www.uniliitto.fi
FRANCE
AFSJR
Guy Bourhis
02-38-34-32-80
[email protected]
www.afsjr.fr
GERMANY
Munich
Deutsche Restless Legs Vereinigung
Ilonka Eisensehr
[email protected]
www.restless-legs.org
NETHERLANDS
Zaanstad - Stichting Restless Legs
c/o Ms. Joke Jaarsma
31-20-679-6234
[email protected]
www.stichting-restless-legs.org
In the News
In the News continued from page 9
were also evaluated by three psychiatrists (two of
whom did not know if the parent had RLS or
not) who performed thorough in-person and
medical history reviews to determine if there
were any psychiatric disorders. Finally, a
questionnaire was used to determine if any other
family member not included in the study may
also have a psychiatric disorder.
The results of this study showed 11 of the 37
(30%) parents and 9 of the 26 (35%) children
had evidence of RLS. None had been previously
diagnosed with RLS. Twenty-nine parents
(76.0% of the mothers and 83.3% of the fathers)
were diagnosed with one or more psychiatric
disorders, including ADHD. Mothers of children
with ADHD had higher rates of depression,
anxiety, and ADHD, while fathers had higher
rates of personality disorders. Those parents
diagnosed with RLS did have higher rates of
psychiatric disorders, specifically ADHD,
agoraphobia, and other anxiety disorders.
NEW ZEALAND
Nelson - Convenor of Richmond
RLS Support Group
Tom Marston
0064-03-5486398
[email protected]
Bottom Line: Based on this study, if a child has
ADHD, their parents have higher rates of
psychiatric disorders. If a child has ADHD, and
the parent has RLS, the parent has a greater
chance of having ADHD, agoraphobia, and/or
other anxiety disorders.
Spanish Association of Syndrome of
Anxious Legs (AESPI)
President Esperanza Lopez Maquieira
C/O Alberto Alcocer
19 1 º D, 28036-Madrid (Spain)
Tel. 986712547/609373923
www.aespi.net
New Questions: Do the psychiatric disorders
develop because of the RLS (i.e. lack of proper
sleep leading to depression and anxiety) or would
this occur even if the RLS was well treated? Does
the severity of RLS correlate with the chance of
having a psychiatric disorder? Is there a shared
mechanism between RLS and ADHD that could
be used to treat one or both conditions?
SPAIN
Montserrat Roca
[email protected]
www.aespi.net
34-93-202-38-39
SWEDEN
Stockholm
Sören Hallberg
[email protected]
+46+240-281 25
Sten Sevborn
[email protected]
+46+411-52 57
SWITZERLAND
Zurich, Wil, Aarau Support
Group Switzerland
Dr. J. Mathis
[email protected]
www.restless-legs.ch
Anni Maurer
056-2825403
[email protected]
12 NightWalkers
RLS and Narcolepsy
Restless legs syndrome is frequent in narcolepsy
with cataplexy patients. Plazzi G, Ferri R,
Dauvilliers Y. Sleep. May 2010.
Background: Narcolepsy is a chronic disease
characterized by excessive daytime sleepiness
(EDS). Patients with narcolepsy experience
extreme fatigue during the day and may possibly
fall asleep at inappropriate times. Cataplexy is a
brief, but sudden, loss of muscle tone, and can be
as mild as minor loss of facial muscle tone to a
full body collapse. Cataplexy frequently affects
people with narcolepsy. Patients with narcolepsy
with cataplexy have very disturbed nighttime
sleep (vivid nightmares, frequent waking,
periodic limb movement during sleep, and
obstructive sleep apnea for example).
Research: The researchers in this study wanted to
determine how common RLS is in patients with
narcolepsy with cataplexy. There were 184
narcolepsy with cataplexy patients and 235 agematched control patients without narcolepsy in
this study. All patients were evaluated in-person
by a sleep disorder expert to ascertain
demographics, medical history, medication
history, sleep habits, sleep disorders, and a
detailed RLS history (if symptoms were present
based on the International RLS Rating Scale).
The results of this study showed the control
group of patients had an RLS prevalence of 3.0%
(7 of the 235), but the narcolepsy with cataplexy
group had an RLS prevalence of 14.7% (27 of
the 184). The RLS history, such as age of onset,
severity score, and family history, was almost
identical between the two groups. The patients
with narcolepsy with cataplexy who were older,
had higher iron levels, and who had sleep
paralysis (one manifestation of cataplexy),
seemed to have higher rates of RLS.
Bottom Line: Based on this study, there appears
to be a higher rate of RLS in patients with
narcolepsy with cataplexy.
New Questions: Typically, people with low iron
levels have an increased chance of RLS, but in
this study the opposite was true for those patients
with narcolepsy with cataplexy. Why is this and
what could this tell us about the mechanisms of
how RLS works?
Glossary
In the News
Agorphobia: a fear of open or public places.
Cataplexy: a brief, but sudden, loss of
muscle tone.
www.rls.org
# Cut along this line to return the order form.
R L S F O U N D AT I O N M E R C H A N D I S E O R D E R F O R M
Circle color, size, and indicate quantity for each item. Complete shipping information on reverse side.
Item Description
**NEW** 100% cotton 5.8 ounce relaxed dyed t-shirt.
Coverseam stitched collar. Double-needle stitched sleeve
and bottom hem. Available in lipstick, grasshopper, wave,
coffee bean, and port.
Sizes
Color
M
L
XL
XXL
grasshopper
M
L
XL
XXL
wave
M
L
XL
XXL
coffee bean
M
L
XL
XXL
port
M
L
XL
XXL
butter
S
M
L
bluebell
S
M
L
light blue
S
M
L
**NEW** It's a polo for the ladies! This polo features 100%
Peruvian Pima cotton. With a feminine fit, its delicate Ycollar, two-button placket, DuraPearl buttons, and rib knit
cuffs will keep you classy and spreading the word at the
same time. Available in royal blue or butter.
royal blue
S
M
L
butter
S
M
L
Ladies' sweatshirts. 100% ringspun combed cotton dyed
fashion hood or crew. 8 ounce french terry. Feminine fit. Vpatch with slit on hood. Raglan sleeves. Wide rib knit cuffs
and waistband. Pouch pocket on hooded sweatshirt.
Hooded sweatshirt available in blueberry and crew
sweatshirt availabe in navy.
blueberry
S
M
L
Ladies' tee. 100% ringspun 6 ounce interlock cotton
ladies' luxury t-shirt. Coverseam stitched set-in collar.
Double-needle stitched sleeve and bottom hem. Available
in butter, bluebell, and light blue.
Price
lipstick
XL
XXL
XXL
XL
$40.00
navy
S
M
L
XL
M
L
XL
$50.00
navy
M
L
XL
pacific blue
M
L
XL
XXL
black
M
L
XL
XXL
heather
M
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XL
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navy
M
L
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$12.00
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heather
www.rls.org
$12.00
$32.00
french blue
Spread the word about RLS in this 100% cotton
heavyweight 6.1 ounce men's longsleeve t-shirt. Taped
shoulder to shoulder. Coverseam stitched collar. Double
needle stitched sleeves and bottom hem. Relaxed fit.
Available in navy and heather.
Total
$22.00
**SALE** Look great and stay warm in this three-season
jacket available in both men’s and women’s sizes! Men’s
jacket is navy. The women’s jacket is available
in french blue. (Was $75)
**NEW** Here's something for the men in your life!
100% cotton heavyweight 6.1 ounce men's t-shirt.
Coverseam stitched collar. Double needle stitched sleeves
and bottom hem. Relaxed fit. Available in pacific blue,
black, and heather.
Quantity
M
L
XL
XXL
Fall 2010 13
R L S F O U N D AT I O N M E R C H A N D I S E O R D E R F O R M
To order, circle color, size, and indicate quantity for each item.
Item Description
Color
It's a polo just for men. This polo features 100% Peruvian
Pima cotton. There is additional yarn in the collar and
cuffs for a neater appearance and greater durability. With
stretch tape shoulders for extra strength, three-button
placket, Dura-Pearl buttons, and rib knit cuff, you're
sure to make a statement. Available in Blue or Tan.
blue
Sizes
M
L
Price
XL
Quantity
Total
XXL
$32.00
M
tan
cigar
L
XL
XXL
L
XL
XXL
Men's 100% ringspun cotton hooded sweatshirt. Two-ply
hood. Front pouch pocket. Ribbed cuffs and doubleneedle stitching throughout. Available in cigar and slate.
$40.00
slate
M
L
XL
XXL
blue
M
L
XL
XXL
This microfiber shell is lined with mesh for breathability
and warmth. Windproof and water resistant, it feaures
2 zippered side-entry pockets and high-quality ribbing
at the waist and cuffs. Available in blue and navy.
$66.00
M
navy
L
XL
XXL
indigo
Embroidered logo baseball-style caps in indigo, butter, or
natural with blue bill.
$12.00
butter
natural/blue
Our fleece blanket is soft on the budget, but sturdily
constructed with blanket stitch hem to guard against
fraying. The easy-to-carry strap makes it perfect for
events. 13.5-ounce, 100% spun polyester fleece; dyed-tomatch blanket stitch hem; dimensions: 50" x 60. Available
in royal blue and navy.
royal blue
$25.00
navy
Method of Payment:
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RLS Foundation • 1610 14th St NW, Suite 300
Rochester, MN 55901
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www.rls.org
Ask the Doctor
Q: I am a 71-year-old female who has had RLS since
childhood. My doctor put me on a low dosage blood
pressure drug and said we needed to address my lack of
sleep before I had a stroke. He put me on Tylenol #3
(once nightly). I have slept through the night since. I
am up to 2.5 pills per night and have been taking
Tylenol #3 for five years. What is the long-term effect
of Tylenol 3? I would like to know how I can keep
from becoming addicted to this drug.
A: Codeine in Tylenol #3 is a low potency opioid which can
help RLS symptoms but can be addicting in higher
dosage used frequently. You seem to be doing fine on
your current dosage but you should check with your
doctor before increasing your dosage or deciding to stop
it. While your current dosage is not that high,
acetaminophen in Tylenol #3 can injure the liver in high
dosage. Acetaminophen is present in many over the
counter medicines so check the content labels.
Robert Werra, MD
Q: Does electricity or static electricity affect symptoms?
Has this ever been studied?
A: The only studies that involve electricity are electromyography
and nerve conduction studies of RLS patients. These sorts of
studies demonstrate the resting and active electrical activity of
muscles in the legs, and the ability of nerves to conduct
electricity. Theses studies are generally concerned with other
potential conditions that may mimic (or are associated with)
RLS such as neuropathy, neuromuscular diseases, and
cramps. As far as I know, there are no studies of electricity
used to treat symptoms.
Q: I have RLS and Parkinson disease. When the pain in
my legs became unbearable, I agreed to take Sinemet.
Two hours is the longest I can sleep. When I had an
MRI done to the spine, the pain completely vanished.
The technician said others had the same experience.
Could the MRI have affected my RLS symptoms?
A: In a literature search there were no articles addressing
magnetic field force affecting RLS. Moreover, since RLS
causation comes primarily from the brain, spinal MRI
would be unlikely to affect RLS. However, there is still
much unknown, so enjoy your relief, and I will alert my
Radiology colleagues. As a sidelight, Sinemet is a
relatively short lasting medicine. You might consult your
physician about a longer acting medicine if your RLS
becomes a problem again.
Robert Werra, MD
www.rls.org
Q: Can a person with RLS have symptoms in the groin
and hip area? Naval area? I have such and it is painful
at times.
A: Yes. Although we call it Restless Legs Syndrome, the
underlying etiology for primary RLS is believed to
involve the central nervous system (brain and spinal
cord). The central nervous system controls sensations
and movements of the entire body. So while the
symptoms of RLS most often affect the legs, it is possible
for patients to experience symptoms anywhere in the
body. Some studies suggest that up to 50% of patients
may experience arm symptoms at some point in time. A
smaller percentage may notice RLS symptoms in the
abdomen, chest, hip, and tongue. Even “phantom limb”
RLS has been reported.
A: RLS symptoms can occur anywhere in the body,
although they always start first in the legs. As the disease
progresses, symptoms usually spread to the arms but can
occur in any other body parts. To be sure that your other
body part symptoms are due to RLS, you should feel
relief with movement.
Mark J. Buchfuhrer, M.D
Q: A friend told me that a neurologist could give me a
shot (akin to a cortisone shot) to relieve my RLS
symptoms for six months or so. Is this true? I have a lot
of trouble with the disorder.
A: I am not aware of any long-acting RLS shot. However,
since you are having a lot of RLS trouble, I suggest you
check with your physician about this and other RLS
treatments.
Robert Werra, MD
Q: I am an 80-year-old woman. I have had RLS for many,
many years and take Lyrica. About eight years ago, my
legs started aching mostly from the knee down. The
pain has worsened, and it is difficult to walk. I have
good circulation in my legs – no blockages. Could the
pain I have be associated with my RLS? I never thought
so, but the nights are terrible.
A: Although RLS can cause actual leg pain and can worsen
with age, it should be improved with walking, at least
temporarily, and not make it difficult to walk. Other
conditions including neurologic and spinal conditions
may be causing your problem. Your physician can help
you pursue other non RLS causes.
Robert Werra, MD
Fall 2010 15
Ask the Doctor
Ask the Doctor continued from previous page
Q: I have had RLS for 40 forty years. I had reconstructive
knee surgery and for four to six weeks my RLS in that
particular leg drove me crazy. Similarly, a friend who is
rarely bothered by RLS had hip replacement and her
legs bothered her constantly. Why would this be?
A: This phenomenon is not well understood, but many RLS
patients complain of significant worsening of symptoms
after trauma or surgery. Further research is necessary to
figure out why this occurs.
A: The exacerbation of RLS symptoms following surgery is
anecdotally reported by many RLS patients. There are
many potential reasons why this may be the case
including post-operative blood loss, underlying iron
deficiency, sleep loss due to pain, rebound following pain
relief medications, prolonged bed rest and/or immobility,
and peripheral sensory-motor nerve damage. Although
this topic is not widely studied, there are reports in the
medical literature of spinal anesthesia causing transient
RLS*. The underlying mechanism is not clear, but it does
seem that susceptible individuals (perhaps genetically
predisposed people) may be at risk for RLS exacerbation
or emergence following a surgical procedure.
*Högl B et al. Transient restless legs syndrome after spinal anesthesia:
a prospective study. Neurology. 2002 Dec 10;59(11):1705-7.
Q: I suffer from restless feet, not legs. Are feet and legs
combined? Are there others with restless feet problems
instead of restless legs?
A: Dr. Ekbom, who originally described and named RLS in
1945, stated that RLS does not occur in the feet rather only
in the legs. However, I have seen many patients with RLS
in the legs and feet and a few with RLS only in the feet.
Q: I am an 83-year-old woman who had been physically very
active (five mph walks plus aerobics each day) until a hip
replacement three years ago made most exercising very painful.
About five years ago a neurologist introduced me to Mirapex
.125, which quickly advanced to .250, .375, and now I take at
least .5 to alleviate my RLS symptoms. Along with the
additional dosage, I have gained 40 lbs in the past year and a
half. I am very concerned about whether Mirapex may be
involved in my weight gain. My caloric intake is about 1250
per day. I tried switching to Requip, but it makes me nauseous
and caused augmentation even into my forearms!
A: I could find no medical literature linking Mirapex in
higher dosage with major weight gain. With your 1250
calorie daily intake, the gain is very puzzling and should
be pursued with your physician for other serious causes.
Low thyroid state-hypothyroidism with abnormally low
metabolism can cause weight gain and be a serious
condition. Moreover, there are several other effective RLS
medications that may not have been tried.
Robert Werra, MD
Restless Legs Syndrome and Chinese Medicine continued from page 2
Acupuncture and Moxibustion in Treating RLS
Acupuncture, an ancient Chinese medical therapy used in the
prevention and treatment of disease, is another useful nonpharmacological therapy for treating RLS. It involves
inserting needles into specific points (acupoints or Xue Wei)
on the human body to bring about its therapeutic effects.
Several kinds of acupuncture methods, such as body
acupuncture, auricular acupuncture, scalp acupuncture,
electro-acupuncture, laser acupuncture, acupressure, acupoint
injection therapy (injection of drugs into acupoints), and/or a
combination of the approaches are used in the treatment of
RLS. The mechanism of acupuncture treatment for RLS is
still ill-defined. According to TCM theory, acupuncture
regulates the function of internal organs and rebalances body
energies by stimulating certain acupoints. It restores the
balance between Yin and Yang and regulates Qi (the essence)
and blood so that integral unity can be maintained and
miscellaneous diseases cured. Acupuncture also induces
relaxation and an overall feeling of calm.
16 NightWalkers
Although most of the literature declared that acupuncture
had a good effect in treating RLS without side effects and
dependence, there is still insufficient evidence to support this
hypotheses. There is a lack of well-designed randomized
controlled trials. More research needs to be conducted to
determine the effects of acupuncture on RLS.
Moxibustion, an ancient TCM practice, can also help to
control RLS symptoms. Moxibustion is the utilization of the
mugwort herb, or "moxa," to stimulate the points on the
body used during acupuncture. Stimulating these points can
help to energize or align one's Qi, and also can induce a
smoother blood flow, which will reduce the urges of RLS.
*The herbs mentioned on page 2 are summarized from 76
articles about TCM treatment for RLS (both in English and
Chinese). Nine of them are clinical trails with control and three
of them with randomization. Future work needs to be done to
fully evaluate the efficacy of the preparation.
www.rls.org
Medications for RLS
The following information was compiled by Dr. Jacci Bainbridge, PharmD,
FCCP and reviewed by members of our Medical Advisory Board. The
content of this document is offered for informational purposes only and no
products are endorsed by the RLS Foundation. It is very important to talk to
your healthcare provider before administering any medication changes. This
is not a complete list.
Kinds of Medications
There are many non-medical therapies to relieve some
restless legs syndrome (RLS) symptoms, but many
individuals with more frequent or severe RLS request
information on medications available and helpful to assist
in relief. There are six categories of drugs that have been
found helpful for RLS. They are dopaminergic agonists,
hypnotics (benzodiazepines/nonbenzodiazepines), opioids,
nonopioids, antiepileptic drugs, antidepressants, iron, and
others not specific to a category.
insomnia, and compulsive behaviors (rare, but potentially
devastating).
Other Dopaminergics
Sinemet® (carbidopa/levodopa)
• May not be a first line option in this class of drugs for
many patients.
• Controlled Release (CR) may be better than
Immediate Release (IR) for RLS if Sinemet is an
option for the patient. Any levodopa drug should not
be used on a daily basis due to a very high risk of
augmentation. Of the levodopa preparations, the CR
version may be best, but should still be used with
extreme caution.
• IR Sinemet can be very useful for intermittent use for
patients with mild RLS as it works very quickly
(within 15-30 minutes on an empty stomach) and
may not cause augmentation when taken on an
intermittent basis.
It is important to understand that only two of the following
medications have been FDA approved for the treatment of
moderate to severe RLS. The other treatments listed have been
known to provide some relief when used “off label.” In the
United States, the regulations of the FDA permit physicians to
prescribe approved medications for other than their intended
indications. This practice is known as off-label use.
May cause drowsiness, dizziness, or lightheadedness. Effects
may be worsened if taken with alcohol or other medicines.
Dopaminergic Agonists
Requip® (ropinirole)
• One of only two FDA approved drugs for the
treatment of RLS.
• Requip XL (ropinirole extended release) has not been
FDA approved for the treatments of RLS.
Mirapex® (pramipexole)
• One of only two FDA approved drugs for the
treatment of RLS.
• Mirapex ER (pramipexole dihydrochloride extended
release) has not been FDA approved for the treatment
of RLS.
Other Benzodiazepine Hypnotics
Klonopin® (clonazepam)
• Generally not recommended due to multiple
metabolites and a very long half-life of 40 hours.
Valium® (diazepam)
• Not generally recommended due to a very long half-life.
Non-FDA-Approved Dopaminergic Agonists
Apokyn® (apomorphine)
Parlodel® (bromocriptine)
Dostinex® (cabergoline)
*Neupro® Patch (rotigotine)
* Currently not on the market in United States, but
may be in 2011-2012.
The side effects of dopaminergic drugs tend to be nausea,
vomiting, orthostatic hypotension (a temporary lowering of
blood pressure (hypotension) due usually to suddenly
standing up), hallucinations, augmentation* of symptoms,
www.rls.org
Benzodiazepine Hypnotics
Restoril® (temazepam)
Halcion® (triazolam)
Xanax® (alprazolam)
The side effects of hypnotics tend to be constipation,
urinary complications, dizziness, falls, and some cognitive
dysfunction.
Non-Benzodiazepine Hypnotics
Ambien® (zolpidem)
Lunesta® (eszopiclone)
Sonata® (zaleplon)
Generally the nonbenzodiazepine hypnotics are well
tolerated, but some patients have reported headaches,
dizziness, and vivid dreams.
Fall 2010 17
Augmentation is defined as a worsening of RLS symptoms that occurs after starting a medication
to treat RLS. Particularly with dosage increases, RLS symptoms may occur earlier in the day,
spread to body parts other than the legs, be more intense, and begin after a shorter period of rest
or inactivity than before treatment. In addition, jerking of the limbs, either while awake or asleep,
can intensify. It is as if the medication were having the opposite effect than it did initially.
Opioids
Codeine
OxyContin® (oxycodone)
Dolophine® (methadone)
Darvon® (propoxyphene)
Levo-Dromoran® (levorphanol)
Dilaudid® (hydromorphone)
Vicodin® (hydrocodone and acetaminophen)
Opana® IR or ER (oxymorphone)
Duragesic® Patches (fentanyl)
MS Contin® (morphine, controlled-release)
Demerol® (meperidine)
Talwin® (pentazocine)
Non-opioid Analgesics
Although tramadol is technically not an opioid, it is often
classified with opioids. Ultram starts out as a non-opioid
analgesic but is converted to an opioid after metabolism in
the liver.
Ultram® (tramadol)
The side effects of opioids tend to be constipation, dizziness,
falls, nausea, vomiting, and sometimes loss of efficacy over
time. There may be fewer side effects reported with Ultram.
Antiepileptic/Anticonvulsant Drugs
Depakote® (valproic acid)
Tegretol® (carbamazepine)
Lamictal® (lamotrigine)
Neurontin® (gabapentin)
Lyrica® (pregabalin)
Topamax® (topiramate)
Gabitril® (tiagabine)
Side effects can include sedation, blood count abnormalities,
rash, weight gain, edema, tremor, dizziness, and some
cognitive dysfunction.
Rochester MN 55901
Phone 507-287-6465
Fax 507-287-6312
[email protected] • www.rls.org
18 NightWalkers
Tricyclic Antidepressants
Elavil® (amitriptyline)
Pamelor® (nortriptyline)
Side effects can include constipation, urinary dysfunction, dry
mouth, dizziness, falls, and cognitive dysfunction.
Serotonin Norepinephrine Reuptake Inhibitors (SNRIs)
Cymbalta® (duloxetine)
Side effects can include headache, nausea, insomnia, diarrhea,
and dry mouth.
Other Drugs
The drugs below are generally not used because of their side
effect profile. Literature on their benefit is very old and
clinical experience does not demonstrate any important effect
on RLS.
Liorasel® (baclofen)
Catapres® (clonidine)
Side effects can include constipation, sedation, seizures (rare),
and some cognitive dysfunction.
Conclusion
RLS is a common and an under-diagnosed, treatable
condition that can have significant effect on quality of life.
RLS onset can occur in childhood, although prevalence
increases with age. When choosing medications, dopamine
agonists are first line therapy. It is important to remember the
availability of generic medications could dramatically increase
the number of patients who get treatment for RLS as well as
save money in cost.
*A complete handout on augmentation is available from the RLS
Foundation
The Restless Legs Syndrome Foundation is dedicated to
improving the lives of the men, women, and children who live
with this often devastating disease. The organization’s goals are
to increase awareness of restless legs syndrome (RLS), to
improve treatments, and, through research, to find a cure.
www.rls.org
Bedtime Stories
Bedtime Stories are the opinions of the authors only and not of the RLS Foundation, its employees, or its Board of Directors.
Publication in NightWalkers does not imply endorsement by the RLS Foundation. Therapies and results described in Bedtime
Stories reflect the experiences of individuals and cannot be generalized to everyone with RLS. It is important to talk to your
healthcare provider and investigate concerns such as safety, efficacy, and cost before making any changes to your treatment
regimen. Stories may be altered for length or clarity.
O
dd how medicines affect different people in different
ways. A past comment in “Bedtime Stories” said Tylenol
made a woman’s RLS worse. I take Tylenol for arthritis and
it doesn’t bother my RLS, but when I take Advil
(ibuprofen) it makes my legs worse.
Starr
I
I
have found that FD&C yellow #5
frequently sets off my RLS. It is a
synthetic food coloring used in a lot of
foods we eat. Examples include soups, candies, drinks,
cereals, cakes, chips, and mustard. Frequently when my
RLS starts up unexpectedly, all I have to do is look at what
I ate earlier that day. I also suspect red food colorings are
another culprit.
Allen
have found relief with methadone as prescribed by my
doctor at Mayo Scottsdale. I’ve seen letters from others who
have also found it the only medication that works. I’ve been
taking it since 2003 with great success. I have tried other
medications, but nothing gives me nightly relief like
methadone. My last sleep study showed no movements!
Jane
hank you for sending the new Special Accommodations
Cards with my membership renewal to attempt to alert airlines
of the special needs of RLS patients. This is very helpful!
Michael
A
I
very heartfelt thank you to the folks at RLS
Foundation for the article on RLS & Iron in the Spring
2010 edition of NightWalkers. I have switched to red meat
(grass-fed beef and buffalo) and a multivitamin with iron,
and for the last two weeks I have not had to get out of bed
and pace! Two weeks may not be long enough to say the
added iron is a guaranteed “fix,” but even one night’s sleep
is a blessing.
Isabella
Medical Editor’s Note: Oral iron therapy typically takes many
weeks or months to help RLS symptoms for patients who do
benefit from this therapy.
I
am in my 70's and have suffered from RLS forever. I am
happy to report that I have not had Restless Legs for over
30 days. My wife is ecstatic and is able to enjoy a perfect
night’s sleep without my thrashing about. When I visited
my neurologist early this summer he suggested that I try
Requip XL (24 hour slow release ropinirole). After some
trial and error I am enjoying 100% relief 24/7. My new
regimen is as follows: Before my evening meal I take 3 mg
ropinirole HCL. When I retire I take 2 mg Requip XL and
"Shazam" no RLS.
Dick
www.rls.org
T
have suffered with sleep apnea and RLS for around 30
years. In March I purchased a Contour Adjustable Bed.
Since then I have not had the miserable nights I was so
accustomed to. I have told many friends about this as and
I am very curious to know if others have had similar
experiences using these beds. I certainly feel it has worked
so well for me.
Anna
T
he best thing to do when your RLS acts up is to put on
warm pants and use a hot water bottle on your lower back
and buttocks. The heat helps a lot.
Vera
I
take oxycodone and Mirapex for my RLS. I must say I
put off taking the oxycodone for the longest time, but then
I got desperate and tried it and it certainly did help. My
doctor told me that chances are slim that I would get
addicted since I am taking it for a medical reason. It is not
worth suffering with RLS.
Lorraine
Fall 2010 19
Charitable Giving
Stock Gifts
Deciding to donate to the Restless Legs Syndrome Foundation
– or any nonprofit organization – can mean more than writing
a check. Turning the strong sentiment you have for RLS into a
meaningful and satisfying contribution takes careful planning.
The RLS Foundation wants to help ensure your philanthropic
goals are achieved.
Before grabbing your pen and writing out a check, you may
want to consider other ways to give. For instance, if you
donate appreciated stock (that has been held for more than
one year) from your investment portfolio, this could result in
income tax benefits for you. This is due to specific rules about
certain stock gifts to private foundations. If the stock donated
appreciated in value since its purchase, you may be eligible for
a charitable deduction equal to that of the stock’s market value.
There are also instances where the stock doesn’t have to
appreciate if you donate directly to the nonprofit organization.
There are certain limitations and rules for this kind of giving,
but it is all easily distinguished and navigated by a professional
advisor. Some such limitations are that your gift must be
donated before year-end (December 31) to be valid for the tax
return of that year.
Charitable giving options are not limited to stocks. The RLS
Foundation also has a brochure covering estate, planned giving
and wills. This brochure and more information about giving
options are available at www.rls.org/publications or by
contacting the Foundation directly via phone (507)287-6465
or email: [email protected].
Exciting Property Offer
The RLS Foundation receives gifts and donations of all
kinds. One such extraordinary gift was a timeshare in
Austria. We are gracious for having the opportunity to raise
funds through the sale of this property and extend the offer
to you, our loyal members.
The Property
Located in Alpenland Sport Hotel-St. Johann, the timeshare
resides in Austria’s prime skiing area. Surrounded by
mountains and meadows, it offers year-round vacationing
with skiing, hiking, climbing, or visiting Salzburg’s rich
cultural highlights.
Alpenland features 128,000 square feet of resort space with
137 guest suites. Decorated in traditional alpine, it combines
modern recreation and old-world style. It has been called one
of the world’s greatest ski and summer recreational areas. All
suites feature breathtaking views of the Austrian Alps. Other
amenities include hot tub, indoor pool, refreshment car,
terraces, tennis court, sauna, steam bath, massage room, four
restaurants, a nightclub, slopes, and a fitness center.
Underground parking creates a convenient way to unload for
your vacation.
Timeshare Details
The property is located in St. Johann im Pongau, Salzburg
Austria. Alpenland is about 37 miles from Salzburg. Price
includes biannual (even years) with one-week floating.
Timeshare is one bedroom, one bath that sleeps up to four.
There is an annual maintenance fee of about $31.00 USD
per month. Asking price is $4500 USD. Consider
purchasing an unbelievable getaway while supporting an
important cause in your life!
Correction: In the Summer 2010 issue one healthcare provider in our listing was incorrectly addressed. Please note that Dr.
Rachel Morehouse, MD is located in Saint John, New Brunswick, Canada. Her full contact information is available in our
online directory at www.rls.org/hcps.
20 NightWalkers
www.rls.org
Clinical Trials
Tugging, burning, creepy-crawly, pulling: A research study is being
conducted locally to evaluate an investigational medication for
RLS. If you have symptoms of RLS call 1-888-651-3959 or go to
www.RLS-SleepStudy.com. Qualified participants will receive free
study-related exams and study medication.
Does it ever feel like insects are crawling inside your legs? You may
qualify for a research study if you are over 18 and have had RLS
symptoms for at least six months. Research includes free studyrelated exams and study medication. Located in Salisbury, N.C.
For more information, contact Kathy Gray at 704-637-3145 or
[email protected].
Peninsula Sleep Center is actively involved with research and clinical
trials to evaluate new treatments for RLS. In most cases you will be
paid for your time and travel. Please call 650-636-9396 (option 4) or
email [email protected] if you are interested.
Dr. Lori Lange and a team of graduate researchers at the University
of North Florida are conducting a web-survey study on the impact of
ongoing physical symptoms in the lives of patients. Patients must be
at least 18 years of age, have experienced ongoing or intermittent
somatic symptoms for more than three months, have an illness with
ongoing symptoms (e.g., arthritis, lyme disease, eczema, COPD) or
suffer from a chronic syndrome (e.g., fibromyalgia, IBS, CFS,
MCS), or experience medically unexplained persistent symptoms
(e.g., pain, fatigue, fever). If you would like to participate or desire
further information, please go to: www.unf.edu/~llange/voice.
If you are a healthy adult with RLS between the ages of 18-65, you
may qualify for a research study of an investigational medication
for RLS. Please call Southwestern Research, Inc. at 714-665-1277
to see if you may qualify for a clinical study. Qualified participants
may be compensated.
Jerking. Twitching. Fidgeting. This research study is evaluating a
medication for RLS. Qualified participants must be at least 18
years of age, experience RLS symptoms and have trouble sleeping
due to RLS. Please call 404-851-9934 or visit www.neurotrials.com.
University Hospitals Case Medical Center RLS Research: You may be
eligible to participate in a research study if you have RLS and are at
least 18 years of age. We are investigating the possible relationship
between RLS and mutation in a skin protein gene which commonly
occurs in Caucasians. For this reason we are studying only Caucasians
with RLS. Other exclusionary criteria may also apply. If you are
interested, please contact Brian Koo, M.D. at [email protected] or
(718) 813-9422. Participants will be compensated for their time.
Tugging, burning, creepy-crawly? Discomfort or pain in your legs?
Visit www.rls-study.com for more information on participating in
an RLS research study.
Are you an RLS Patient who switched to ropinirole from
pramipexole? Do you have moderate to severe RLS? Go to
http://clinicaltrials.gov/show/NCT00344994 for details on
participating in an important RLS study.
You may be eligible to participate in a research study of an
investigational medication intended to help control the urge to
move your legs. As a qualified participant, you may receive:
investigational medication, study-related exams, as well as up to
$200 in compensation for your time and transportation. To
participate, you must be 18 to 85 years of age, and experience
symptoms of RLS. Contact: Timothy Grant, MD or Howard
Schwartz, MD for more information at (305) 279-0015 Ext. 4238.
If your RLS symptoms occur at least three times a week and you
are over 18 please contact Broward Research Group 954-322-1600
or email [email protected].
Are you 18-60 years of age? Have you had RLS symptoms for at
least six months? If so, you may qualify for this RLS research study.
Research includes free study-related exams and study medication. If
you are interested, please contact Margaret McDonald at SleepMed
of South Carolina by calling 803-251-3093 or by emailing
[email protected].
Volunteers who have been diagnosed with moderate to severe RLS,
are 18 to 85 years of age, and have the ability to participate in a
study at Booth Gardner Parkinson’s Care Center in Washington are
needed. Please contact 425-899-3126 or 425-899-3115.
If you are a licensed driver age 21 to 65 and have RLS, you may qualify
for a study. Call today for more information: 1-877-5-STUDY-9.
If you have a physician diagnosis of RLS, you may qualify for a
study being conducted by Select Physical Therapy in Denver/Castle
Rock, Colorado. For more information call 303-814-2865 or email
[email protected].
Men and women over the age of 18 with RLS are needed to
participate in an inpatient research study. Participants will visit the
Johns Hopkins campus in Baltimore, MD for at least two five-day
stays and will have continued involvement for up to one year. Call
410-550-2252, ask about study #301.
If you have been diagnosed with RLS and are over the age of 18,
you may qualify for this study. Participation would include a
seven-day stay at the Johns Hopkins Bayview campus, and you
may continue to take your RLS medications during the study.
Call 410-550-2252, ask about study #203.
www.rls.org
If you and/or your twin brother/sister are affected by RLS, you are
invited to participate in an RLS twin study at the Center for the
Study of Brain Diseases, University of Montreal, Montreal, Canada.
Participation requires your consent, a blood draw, and a telephone
interview. All participation material will be mailed to you. Call
514-890-8000 ext 15552 or email [email protected].
The use of valerian as a complementary treatment may benefit
persons with RLS. If you are interested in participating in the
study, call 215-898-1935.
Fall 2010 21
RLS Foundation News
Searching for a Family Link
Because of the genetic component of RLS, we often receive questions about family studies. While the RLS Foundation itself does
not conduct surveys pertaining to a specific family alone, there are studies out there – both formal and informal – that are actively
looking for a link.
Jesse “Pete” Hannah, Jr. is 54 years old and has lived with RLS since he was a young child. “Thinking back,” Pete started, “I couldn’t
have been much older than around nine when my legs started bothering me. I didn’t know what it was, but I knew I couldn’t sit still
or relax. I’m sure they were the same symptoms that I have now, but as a child you just don’t have as much trouble with it.”
XXXXXX
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XXXXXX
XX
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He knew the name of his disorder and is currently taking
medication to ease his symptoms. But was there a genetic cause?
He can recall seeing his mother up at night walking, rubbing
her legs. “I realized my mother and aunt, her sister, had RLS.
Then later in life, I learned my sons had RLS too. I have six
grandkids and there are currently no signs that they are living
with RLS… but the oldest is only seven.”
Once Pete saw the link between the various members of his
family, he began compiling questions. “Who else in my family
dealt with RLS?” Pete wondered. “Once I had my questionnaire
together, I took it to an upcoming family reunion. I had a few
people fill it out right away and have received more via email
after the reunion. I have at least eight completed surveys now. I
also kept the reunion sign-in book,” he added. At the very least I
now have the contact information from most of my relatives.”
Pete hopes the information he collects will assist in the
understanding of RLS. He is finding common themes in the
surveys and is planning to pass the final data on to those
studying RLS.
Above is an example of a completed survey from Pete’s family study. This is for
informational purposes and is not intended to be a complete scientific survey
??
22 NightWalkers
In summary, collecting family data can be a way to gain
support, better cope, and learn more about RLS. Surveying is
also a great way to connect with others and spread awareness
about this disorder.
Keep Those Questions Coming!
Please submit your “Ask the Doctor”
questions by email [email protected]
or by mail to RLS Foundation, 1610 14th St
NW Suite 300, Rochester, MN 55901.
Questions are chosen for print based on
available space and applicability to others.
Happy Holidays
The RLS Foundation sends you best wishes
for a beautiful holiday season and a new year full
of exciting RLS advances for all members of
the RLS community!
www.rls.org
RLS Foundation Publications
Membership
Quantity
In addition to knowing that your membership contributions help support the research and education efforts
of the RLS Foundation, you will also receive NightWalkers (the Foundation’s quarterly newsletter), a Medical
Bulletin and referral form for your doctor, medical information card, business cards, chart stickers,
membership card, and free shipping and handling on all publications.
U.S.: $30 Canada: $30 Other international delivery: $40
Total
$
Brochures
Causes, diagnosis and treatment for the patient living with Restless Legs Syndrome: This brochure
(formerly called Living with Restless Legs Syndrome) is written for those with RLS, family
members, and others in search of more information about RLS. The brochure highlights
symptoms and treatments and identifies secondary causes of RLS. (©2007)
$ free
Medical Bulletin: This material is intended for medical professionals and contains the latest
diagnosis and treatment information. (©2008)
$ free
Children and RLS: Restless Legs Syndrome and Periodic Limb Movement Disorder
in Children and Adolescents: A Guide for Healthcare Providers. (©2007)
$ free
Depression and RLS: Special Considerations in Treating Depression when the
patient has Restless Legs Syndrome (RLS). (©2007)
$ free
Pregnancy and RLS: Vital Considerations in Treating a Pregnant Patient who has Restless
Legs Syndrome (RLS). (©2006)
$ free
Surgery and RLS: Special Considerations for the Surgical Team when the patient has Restless
Legs Syndrome (RLS). (©2010)
$ free
Triggers for Restless Legs Syndrome: A Guide to Help You Control and Manage Your RLS. (©2009)
$ free
Understanding Iron & RLS (©2010)
$ free
Understanding Augmentation and RLS (©2010)
$ free
Products
RLS Awareness Ribbon Pin $5.00
$
RLS Tote Bag $10.00
$
RLS Mug $5.00
$
______________________________________________________________
Name
Address _______________________________________________________________
City
______________________________________________________________
State
_______________________________________________Zip ____________
Country ______________________________________________________________
Subtotal
$
Sales Tax*
$
Phone
______________________________________________________________
Shipping/Handling**
$
Email
______________________________________________________________
TOTAL
$
* MN residents please add 6.5%
** Non RLS Foundation members please add $5.00 shipping to your order
Please use the envelope in the center of this newsletter to record and mail your payment.
www.rls.org
Fall 2010 23
Nonprofit Org.
U.S. Postage
PAID
Rochester, MN
Permit No. 287
Address Service Requested
Rochester MN 55901
Phone 507-287-6465
Fax 507-287-6312
[email protected]
www.rls.org
Searching for an RLS Spokesperson
We are looking for children aged 1-17 to act as a
spokesperson for youth with RLS. Picture, first name,
age, and location would be used. For examples of how
your child would appear in print, visit our “Faces of
RLS” page.
Help us spread the word! Please pass this announcement to
any friends and family who have children living with RLS.
Telephonic Regional Meetings NEW
The RLS Foundation has begun holding Regional
Meetings via conference call. The goal of these meetings
is to improve health outcomes for individuals with RLS
through improved understanding of the disorder,
available treatment options, and information about local
resource availability. Would you like to have a free
telephone conference in your area led by an RLS expert?
Here is your chance to submit a recommendations for a
medical doctor, healthcare provider, researcher, and/or
pharmacist who is knowledgeable about RLS to lead a
conference. Submit your recommendations to Seema
Dhindaw at [email protected].

nightwalkers - Restless Legs Syndrome Foundation

Transcription

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