Restless Legs Syndrome Foundation Blog

Meet the RLS Foundation's Newest Team Member!

By Adrianna Colucci, RLS Foundation Communications Coordinator

Anjana Ganesh is a senior at the University of Texas at Austin (UT). She recently joined the RLS Foundation as an intern for the remainder of her senior year. In her free time, she enjoys reading, dancing and taking walks around Austin. The RLS Foundation is excited to have her join the team!

Q. What motivated you to pursue this internship opportunity?

A. I am part of UT’s Bridging Disciplines Program, where we are exposed to interdisciplinary classes. My certificate is called Patients, Practitioners & Cultures of Care. As part of the certificate, we are required to complete an internship, and I was really interested in learning more about the nonprofit side of healthcare. I discovered the Restless Legs Syndrome Foundation in an old blog post by my program. Upon delving into its mission and objectives, I found it to be an ideal fit for me. Not only did it align with my background in neuroscience, but it also presented me with an opportunity to explore a new dimension of healthcare.

Q. What has been the most exciting part of working with a new team?

A. It has been so exciting to work at the RLS Foundation! Each person I interact with has a unique skill set, ideas and perspectives, and everyone is so willing to let me learn. I’ve found that this diversity sparks stimulating discussions, leading to fresh approaches and innovative solutions to challenges. Everyone is so supportive and kind, which creates an incredibly compassionate atmosphere where I feel comfortable sharing ideas and asking questions.

Q. You recently wrote articles for the upcoming Spring 2024 edition of NightWalkers, the Foundation’s quarterly magazine. How has writing for the magazine magnified your understanding of the adversities the RLS community faces?

A. It has been such an incredible learning opportunity to write for NightWalkers. My focus has been exploring the intricate relationship between iron and RLS, a topic that has led me to delve deep into scientific literature and conduct insightful interviews, particularly with experts like James Connor, PhD, MS. Through these interviews and research for my articles, I’ve gained a comprehensive understanding of the scientific underpinnings of RLS, particularly regarding its connection to iron deficiency. By synthesizing information from various studies and expert opinions, I’ve uncovered the complexities of how iron levels impact RLS symptoms and the potential mechanisms at play. In my research, I discovered how hard it is to find easily accessible, accurate and concise information outside of the Foundation materials. Even after finding the materials, some studies are exceedingly complex, so it requires a lot of scientific background to understand what is happening.

Interviewing Dr. Connor has provided invaluable insights into the latest research findings and treatment approaches related to iron deficiency and RLS. This has broadened my understanding of the subject matter and equipped me with the knowledge to effectively communicate these concepts to NightWalkers readers.

Q. What have you learned about RLS and why do you feel it is important to increase awareness of the disease?

A. I’ve noticed how RLS is often misunderstood or misdiagnosed, leading to delays in receiving appropriate treatment. Many individuals with RLS may suffer silently, unaware that their symptoms are indicative of a medical condition that can be managed with proper intervention. Oftentimes, physicians aren’t familiar with RLS, and that’s why resources like the Foundation’s network of RLS Quality Care Centers are so important. I think that raising awareness of RLS is essential to ensure timely diagnosis, enhance support for affected individuals, and promote advancements in research and treatment.

Q. You aspire to have a career in the medical field. How will you employ your newfound knowledge of RLS in the future?

A. As a future healthcare professional interested in pursuing neurology, I hope to integrate my understanding of RLS into my approach to patient care. By recognizing the symptoms and implications of RLS, I can effectively assess and address the needs of individuals affected by this condition. Additionally, this internship has introduced me to the importance of medical advocacy and the need for more funding and research. I hope to contribute to advancements in RLS diagnosis and treatment by advocating for improved access to resources and research funding.

The American Academy of Sleep Medicine Invites Public Comment

The American Academy of Sleep Medicine (AASM) is inviting public comment through April 9th on the newly drafted clinical practice guidelines and systematic review of the Treatment of Restless Legs Syndrome and Periodic Limb Movement Disorder. These new guidelines will synthesize the RLS treatment therapies that are now recommended for adult and pediatric populations, updating the previous 2012 AASM RLS guidelines. In these guidelines, treatments were scored as either “strong” or “conditional” (strongly for, strongly against, etc.) The systematic review provides further insight and research data to support the accompanying guidelines. A video overview highlighting the signifcant changes is also available.

Interested members of the public are encouraged to provide feedback on the drafted guidelines to the AASM. From healthcare professionals to advocacy groups to RLS patients and caregivers – all can provide important comments. Varying evidence has value, including both clinical experience and published articles. Public participation ensures that the guidelines meet the needs of the medical and RLS patient communities. Responses should include questions and perspectives that are appropriate, respectful and relevant to the subject.

Comments can be made Tuesday, March 12th through Tuesday, April 9th. To submit comments, complete the disclosure form and email it alongside your comments and questions to ukazmi@aasm.org.

Revisions to the draft guideline and systematic review are at the discretion of the task force, but all submitted comments will be considered and responses internally documented before the guidelines are submitted to the AASM Board of Directors for approval for publication in the Journal of Clinical Sleep Medicine.

Disclaimer: The recommendations in the clinical practice guideline manuscript are in draft form and are still subject to substantive changes by the time they are published in final form. They should not be copied, disseminated, or implemented until final publication.

Helpful Abbreviations

• AASM: American Academy of Sleep Medicine
• CPG: Clinical practice guidelines
• CST: Clinical significance threshold
• IRLSSG: International Restless Legs Syndrome Study Group
• PICO: Patient, Intervention, Comparison, and Outcomes questions
• PLMD: Periodic limb movement disorder
• QOL: Quality of life
• GRADE: Grading of Recommendations Assessment, Development and Evaluation methodology
• RCT: Randomized controlled trial
• SR: Systematic review
• TF: Task force
• WASO: Wake after sleep onset

Translation from Generic Brand Name to Common Brand Names

• Bupropion: Wellbutrin
• Cabergoline: Dostinex
• Carbamazepine: Tegretol
• Clonazepam: Klonopin
• Dipyridamole: Persantin
• Ferric carboxymaltose: Injectafer
• Ferrous sulfate: various iron brand names
• Gabapentin enacarbil: Horizant
• Gabapentin: Neurontin; Gralise
• Levodopa: Sinemet
• Low-molecular-weight iron dextran: INFeD
• Oxycodone: Oxycontin
• Pramipexole: Mirapex
• Pregabalin: Lyrica
• Transdermal rotigotine: Neupro patch
• Valproic acid: Depakote

Dopamine Medications and Impulse Control Disorders

Dopaminergic medications (such as carbidopa/ levodopa, pramipexole, ropinirole and rotigotine) are frequently prescribed to treat RLS. Doctors often – though not universally – warn patients receiving the drugs that they may cause a dramatic worsening of RLS symptoms over time, an effect known as augmentation. However, few physicians and patients are aware of another serious side effect of these drugs: impulse control disorders (ICDs). Studies found 6-17% of patients on dopaminergic medications may be affected. Anyone taking these drugs needs to be aware of the potential for such effects and be proactive in educating their providers if side effects develop. As a moderator for the RLS Foundation’s Discussion Board forum, I often see this brought up in conversations, and I would like to bring awareness to it here.

ICDs show themselves as behaviors that are disturbing and out of the patient’s former patterns. They could emerge as compulsive gambling, compulsive eating, compulsive shopping, hypersexuality or punding (compulsive, repetitive behaviors). Oddly, the patient may not be aware of these new, harmful behaviors. Most ICDs are behaviors that, left unchecked, can destroy financial savings, break up families, cause excessive weight gain or destroy careers. These are serious situations that need to be identified and dealt with promptly. Family members and friends need to be alert and assertive in calling attention to these often-destructive behaviors and ensuring that they are taken seriously by both the sufferer and the medical professional.

ICD-induced compulsive gambling doesn’t refer to friendly, low-stakes, weekly poker games; light-hearted card games with friends; or occasional trips to a casino, assuming those were activities a person enjoyed before starting on the medication. Instead, it is a powerful need to take excessive and frequent financial risks for a perceived immediate gain, whether at the casino, at the horseracing track, or on day trading stocks.

Compulsive eating is another kind of ICD. Raiding the refrigerator day and night can be an indication of compulsion that may lead to rapid weight gain. To be sure, these medications can cause weight gain on their own, but compulsion needs to be ruled out if the patient eats compulsively.

Compulsive shopping does not include your daily essential purchases or even the occasional retail therapy. Compulsive shopping is an unrestrained need to buy unnecessary, sometimes unwanted, items. It is shopping purely to satisfy the desire to buy something – anything.

Hypersexuality is not simply defined as an increase in libido. It is an uncontrolled drive to participate in high-risk sexual activities that often do not include one’s typical partner. This compulsion presents an obvious risk to familial and friend relationships.

Punding is engaging in a repetitive action, such as compulsively assembling and disassembling something over and over again. Assembling a jigsaw puzzle several times in a row only becomes punding when it becomes an uncontrollable urge to work the puzzle again and again. Punding does not carry some of the dangers of the other ICDs, but it is still cause for concern and a reason to consider another medication to treat your RLS.

The one commonality that ICDs have is that the activity, though it may be of high risk and of high consequence, brings pleasure to the individual when they engage in it. The activity stimulates the dopamine pleasure center of the brain. When the patient becomes addicted to this form of stimulation and needs to fulfill the compulsion repeatedly, there can be serious long-term consequences.

As an additional danger, some studies suggest that patients with ICDs are more likely to develop an additional complication, dopamine agonist withdrawal syndrome (DAWS), a long-term condition that can cause severe depression, anxiety and other psychological symptoms that often do not respond to treatment.

Once an ICD is identified and the offending medication is discontinued or even if the dose is significantly decreased, an individual will cease all compulsive behaviors. There is no other effective treatment for the compulsive behavior. Familial support and perhaps even professional therapy may be required in some cases to repair damage to relationships that ICD-induced behavior may have caused.