Restless Legs Syndrome Foundation Blog

October 4, 2018

Know Your Triggers

A trigger is a stimulus that causes a worsening of your RLS. Certain foods, beverages, medicines, excessive stress or exercise can be the source of a trigger. Triggers can vary from one person to another and even among members of the same family. For example, caffeine may be a trigger for one person but not another. All individuals with RLS can benefit from learning what triggers their RLS in order to avoid these substances.

Some common RLS triggers reported by individuals with RLS include:

Caffeine
Smoking
Alcohol
Carbohydrates and refined sugars
Foods high in sodium
Extreme exercise
Emotional stress
Supplements
Over-the-counter medications
Prescribed medications

Sleep Habits

Sleep deprivation is known to worsen RLS symptoms. Good sleep habits such as maintaining a cool, dark sleeping environment, removing electronics from the bedroom to limit exposure to blue light and adhering to a schedule of bed and wake times are key to a restful night’s sleep.

Medications

It is important to be knowledgeable about medications that are acceptable for use and those best avoided by individuals with RLS. Many prescribed and over-the-counter medications are known to aggravate RLS symptoms. The RLS Foundation Medical Alert Card lists important information about these medications on a small card that fits into your wallet so you can easily share it with your doctor, hospital and family members. Diphenhydramine (Benadryl) is an antihistamine commonly found in cold remedies and sleep aids; any over-the-counter medication containing diphenhydramine should be avoided. Decongestants like pseudoephedrine (Sudafed) can severely disrupt sleep for those with RLS. Contrary to popular belief, melatonin may worsen symptoms because of the serotonergic properties (serotonin regulates sleep, mood and appetite) found in the medication. St. John’s Wort, an herbal supplement believed to help with depressive symptoms, can cause a flare up of RLS symptoms in some individuals.

Drugs in the antipsychotic (haldol and seroquel), anti-nausea (phenergan and compazine) and antidepressant (mirtazapine) medication classes are often the culprit for a worsening case of RLS. You should never discontinue use of a medication without consulting your healthcare provider, the RLS Foundation’s Medical Bulletin contains suggestions for safe alternatives to these medications to share with your physician. If you have an upcoming surgery, it is helpful to alert your surgical team to which medications they should avoid so they are prepared.

Although certain medications may be hard to avoid, it is crucial to be vigilant about the ingredients in any of the medications you take. No one knows your RLS triggers better than you; not even your healthcare provider. When you are knowledgeable about your own triggers, you can avoid those substances before they worsen your RLS!

Excerpts from the Q&A

In March 2018, the RLS Foundation hosted the webinar “Medications for RLS,” presented by Michael Silber, MB, ChB, a board certified neurologist and sleep specialist at the Center for Sleep Medicine at Mayo Clinic in Rochester, Minnesota, an RLS Quality Care Center. Dr. Silber is an active member of the RLS Foundation's Scientific and Medical Advisory Board, and the current chair of its Opiates Committee.

The following questions and answers are based on the webinar. Visit the online Member Portal to view the full presentation. To see a listing of all of the Foundation's upcoming webinars, visit www.rls.org.

Individuals suspecting they may have RLS should consult a qualified healthcare provider. Literature and webinars by the RLS Foundation, including this blog post, are offered for informational purposes only and should not be considered a substitute for the advice of a healthcare provider. Prior to making any changes to your treatment plan, please discuss treatment options with your healthcare provider.

Q: How can I tell the difference between augmentation and normal, mild, continuing symptoms of medicated RLS (on pramipexole)?

A: It can be difficult to do that, especially if the restless legs are worsening for some other reason, such as an anti-depressant use or iron levels are dropping. With augmentation, symptoms usually move to earlier in the day, and the restless legs recur at night. And usually, if the dose increases, it gets worse rather than better. Those would be the essential characteristics. But yes, it can be a little difficult and sometimes it needs an expert who has worked with lots of restless legs patients to be sure that it really is augmentation, rather than the disorder worsening for some other reason. If RLS worsens with therapy, consult with the provider who is prescribing the drug.

Q: What is the best medication in terms of little chance of developing augmentation?

A: I’m assuming the question concerns people with chronic restless legs who are going to need daily medication. If you want to have the lowest risk of augmentation, it would be one of the alpha 2-delta ligands (gabapentin, gabapentin enacarbil, or pregabalin). I should mention that gabapentin and pregabalin are off-label uses for restless legs and only gabapentin enacarbil has been approved by the FDA for RLS treatment. There may be reasons not to use those drugs – for example, people who are markedly obese or who have active depression. But if your only consideration is what is the lowest risk for augmentation, those are the drugs to use rather than the dopamine agonists. But each patient is different, and we have to balance the different side effects of each category of drug.

Q: What effect, if any, do opioids have on sleep disruption associated with RLS?

A: Opioids can be very effective for sleep disruption associated with RLS. I always ask people when they come back, “Have you got sleepy during the day? Are you okay driving?” And most patients who have had a good response will say, “Doctor, it’s wonderful. I couldn’t sleep at all with restless legs. I’m much more alert taking opioids at night than I was before I took them.” This surprises some physicians because they’re expecting their patients to have severe day-time side effects. With low doses at night, most people will have very nice sleep because we are eliminating restless legs, and opioids are somewhat sedating. Of course, opioids should only be used for RLS refractory to other drug treatments.

Q: What options are there for treating insomnia that don't either lead to dependence or exacerbate RLS symptoms?

A: I presume the question relates to insomnia unrelated to restless legs – patients who have both psychophysiological insomnia (learned insomnia) and restless legs. Our approach to chronic insomnia disorder today would first be to identify contributing causes, such as anxiety, depression, restless legs, chronic pain, sleep apnea, etc. If there are no obvious contributing factors which can better be addressed, then our approach today is cognitive behavioral therapy for insomnia rather than medications. So, we would generally recommend cognitive behavioral therapy, which can be administered by any knowledgeable health provider, including nurses, physicians or psychologists. Today, what’s nice is that it can also be done online. There are various reputable online self-help programs available. For chronic insomnia, we are tending to avoid medications as much as possible.

Q: Is there particular opioid that you prefer to use for patients that don’t get relief from other remedies?

A: There are various choices on the market. It really depends on individual providers and what they are familiar with. For instance, at Johns Hopkins, where they’ve had probably more experience with opioids than anywhere else, methadone is their drug of choice. We’ve tended to start with oxycodone, often in the long-acting form. Controlled release morphine has also been used. I think it depends on what each provider is familiar with. I don’t think that there is a specific rule.

Q: How long (and at what dosages) can an RLS sufferer use an opioid without becoming addicted?

A: The majority of our patients don’t develop long-term addiction, and there are patients that have used them for ten or more years without problems. The dose might slightly increase. Addiction can occur in a small minority of patients, sometimes fairly quickly. However, it’s rare in the low doses we use, especially with taking reasonable precautions.

Q: Is it possible for your whole body to be affected by RLS symptoms?

A: We’ve seen augmentation spread not just to the arms but to the trunk, as well. There are some unusual people with restless legs, who even from the beginning experience it in the back or the pubic area, or sometimes the arms more than the legs. So, yes, it can affect different areas of the body. The vast majority of patients, before augmentation develops, will have it in the legs. If, from the beginning, it’s entirely in some other area of the body, I’m very careful to be sure it is restless legs and not some other disorder mimicking restless legs.

To view the webinar, visit the Member Portal at www.rls.org. If you are not a member of the RLS Foundation, join us! Scholarship memberships are available. Email info@rls.org for more information.

Dopamine Agonists and the Worsening of RLS Symptoms

Augmentation, as many with restless legs syndrome know, is one of the most common and least understood problems with current RLS treatment. This phenomenon occurs after a patient starts a dopaminergic medication to treat their RLS - and over time it can make symptoms much worse.

Unfortunately, many who initially start on dopaminergic medications say that it is extremely effective in alleviating symptoms, at first. It may take years for augmentation to kick in, or just mere months. Warning signs of augmentation include an increase in symptom intensity, a shorter period of rest or inactivity before symptoms begin, an appearance of symptoms earlier in the day, or a return to what symptoms were like prior to starting treatment (worsening of symptoms). Many also report experiencing RLS symptoms that spread to their arms, trunk or even the face.

"Augmentation is a condition where RLS symptoms start to worsen after initially improving, while on dopamine agonist treatments such as pramipexole, ropinirole, rotigotine, and levodopa," said Dr. William Ondo, director of the Houston Methodist Neurological Institute RLS Quality Care Center. "Since most patients with an urge to move initially respond to properly dosed dopaminergic medicines, augmentation is arguably the biggest practical impediment to successful chronic management of RLS."

In 2015, to combat this gap in information and awareness, the RLS Foundation rolled out a far-reaching "Year of Augmentation" awareness and education program. This included distributing and promoting an augmentation consensus white paper, a collaboration between the International Restless Legs Study Group, the European Restless Legs Study Group and the RLS Foundation. The white paper was distributed by the RLS Foundation to nearly 50,000 US healthcare providers. Foundation volunteer support group leaders were provided with informational "augmentation toolkits" for their meetings. The RLS Foundation also released its first ever long-form video, RLS and Augmentation , which has been viewed by over 10,000 people.

If you think you may be experiencing augmentation, there is help. The Foundation's free What is Augmentation? handout discusses several approaches used to manage augmentation. Prior to making any changes in your treatment plan, it is important consult your healthcare provider to determine if you have augmentation and the treatment approach best suited for you. If you think that your doctor may lack an understanding of RLS, you can find an RLS Quality Care Center or RLS healthcare provider near you. You can also view and share the "Prevention and Treatment of Augmentation" webinar, presented by Dr. Mark Buchfuhrer of Stanford Sleep Medicine Center (an RLS Quality Care Center), from the Foundation's 2017 Webinar Series, available for free on our YouTube channel.

In the days since augmentation first surfaced, significant strides have been made. In 2016, Dr. William Ondo was awarded a $37,000 grant from the RLS Foundation's Research Grant Program to study a new treatment modality for RLS patients who are augmenting. His research team is currently recruiting subjects in Houston, Texas, to study the effectiveness of a new therapy specifically to RLS patients who are currently suffering from augmentation while still taking dopamine agonist medications. Learn more about how to participate here.

If you need additional information on augmentation, please call the RLS Foundation at 512-366-9109 or email info@rls.org and we will be happy to assist you. You are not alone!

New Warnings and Dosing Information

New warnings and dosing information have been added to Requip (ropinorole), a medication used to treat RLS and Parkinson’s disease. The makers of Requip, GlaxoSmithKline, implemented FDA approved changes in the packet insert which include updated dosage and warning information. The update indicates healthcare practitioners and patients to taper off of Requip slowly to prevent neuroleptic malignant syndrome, a potentially serious adverse reaction. Neuroleptic malignant syndrome symptoms include high fever, muscular rigidity, and autonomic dysfunction.

In the event of discontinuing Requip or augmentation, this update reflects important precautions in gradual reduction of dosage. For a highlight of prescribing information, click here.

Speak with your healthcare provider or pharmacist if you have questions regarding your medication. Do not make changes to your medication without the advise of your physician.

PRESS RELEASE, May 18, 2016
Drug Used for Pain, Anxiety May Be Linked to Birth Defects

MINNEAPOLIS – A drug commonly used to treat pain, epilepsy, anxiety and other brain health disorders may be associated with an increased risk of major birth defects, according to a study published in the May 18, 2016, online issue of Neurology®, the medical journal of the American Academy of Neurology.

The drug pregabalin is approved by the FDA to treat epilepsy, fibromyalgia and neuropathic pain, such as pain from diabetic neuropathy or pain after shingles or spinal cord injury. It is also used for generalized anxiety disorder and other mental health issues. This is called off-label prescribing.

For the study, information was collected in seven countries from 164 women who took pregabalin during a pregnancy and 656 pregnant women who were not taking any anti-seizure drugs. The women or their practitioners were then contacted again after their expected date of delivery. 

Pregnancies of the women who took pregabalin during the first trimester of pregnancy were three times more likely to result in major birth defects than those of the women who did not take anti-seizure drugs. Seven of the 116 pregnancies in women taking anti-seizure drugs, or 6 percent, had major birth defects, compared to 12 of 580 pregnancies, or 2 percent, in women who did not take the drug. Birth defects due to chromosomal abnormalities were not included in these results.

The major birth defects included heart defects and structural problems with the central nervous system (CNS) or other organs. The women taking pregabalin were six times more likely to have a pregnancy with a major defect in the central nervous system than women who were not taking the drug, with four CNS defects out of 125 pregnancies, or 3.2 percent, compared to three CNS defects out of 570 pregnancies, or 0.5 percent.

Of the women taking pregabalin, 115 were taking it to treat neuropathic pain, 39 were taking it for psychiatric disorders, including depression, anxiety, bipolar disorder and psychosis, five were taking it for epilepsy and one was taking it for restless leg syndrome.

A total of 77 percent of the women started taking pregabalin before they became pregnant. The women in the study stopped taking the drug at an average of six weeks into their pregnancies. Of the women taking pregabalin, 22, or 13 percent, were also taking another anti-seizure drug.

“We can’t draw any definitive conclusions from this study, since many of the women were taking other drugs that could have played a role in the birth defects and because the study was small and the results need to be confirmed with larger studies, but these results do signal that there may be an increased risk for major birth defects after taking pregabalin during the first trimester of pregnancy,” said study author Ursula Winterfeld, PhD, of the Swiss Teratogen Information Service and Lausanne University Hospital in Lausanne, Switzerland.

Winterfeld said, “Pregabalin should be prescribed for women of child-bearing age only after making sure that the benefits of the drug outweigh the risks and after counseling them about using effective birth control. In cases where women have taken pregabalin during pregnancy, extra fetal monitoring may be warranted.”

To learn more about brain health, please visit http://www.aan.com/patients.

The American Academy of Neurology, an association of 30,000 neurologists and neuroscience professionals, is dedicated to promoting the highest quality patient-centered neurologic care. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as Alzheimer’s disease, stroke, migraine, multiple sclerosis, concussion, Parkinson’s disease and epilepsy. For more information about the American Academy of Neurology, visit http://www.aan.com or find us on Facebook, Twitter, Google+ and YouTube.