RLS, Falls and Bone Health - Online Survey

What is the purpose of the study?

The University of St Mark and St John in Plymouth is running a project which will gather information to try to identify any relationship between Restless Legs Syndrome/Willis-Ekbom Disease (RLS/WED) and the risk of falls and fracture incidence. They have asked RLS-UK to invite you to participate in their online survey.

The current study aims to identify the correlation between the three factors and enabling interventions to prevent someone who is living with Restless Legs Syndrome from having an associated fall and reduce the possibility of them having a future 'fragility fracture', as a result of falling from a standing height. It is being led by Sam Cross and supervised by Dr Giorgos Sakkas, Dr Christina Karatzaferi, and Professor Gary Schum.

Do I have to take part?

No. Your participation in this online survey is voluntary and anonymous. In order to participate, you need to read and click the consent button. By clicking the consent button, you consent your intention to participate. You can withdraw at any time during the completion of the survey but after you press the submit button it will not be possible to withdraw the submitted data (due to the anonymisation process).

What will happen to me if I take part?

If you do decide to participate you will have to answer 36 questions related to demographic, RLS characteristics, Falls risk and fracture history. It will take you approximately 15-20 minutes to read and consent as well as to complete the online survey, (the length of time is dependent on your answers).
The purpose of this research study is to collect anonymous information from people living in the general community, to get a greater understanding of the incidence of Restless Legs Syndrome, any associated incidence of Falls and Fracture risk.

This information will assist in identifying any correlation between the three factors and enabling interventions to prevent someone who is living with Restless Legs Syndrome from having an associated fall and reduce the possibility of them having a future 'fragility fracture', as a result of falling from a standing height.

The data acquired will be totally anonymous and there is no means of tracing participant IP addresses or other details that might lead to a participant’s identification.

The data will be kept for three years and will be stored in an encrypted and password protected university network folder on Dr Gary Schum’s drive. Data will be appropriately destroyed after the end of the 3-year period. Again, the data collected will be anonymous and accessible only by the main investigators within Marjon.

To take part in the study, please visit this link: https://forms.gle/huohEo2oftZgnUrs9

Sleep Problems Can Guide Antidepressant Selection

From Psychiatric Times, 22/05/2019


There’s a paradox with antidepressants. Even as they improve mood they can worsen sleep, and poor sleep is both a symptom and a cause of depression. It’s a common problem, but one that can be avoided by selecting the right antidepressant. Nikhil Rao, MD, has identified antidepressants that work well with specific sleep disorders, including insomnia, restless legs syndrome (RLS), and obstructive sleep apnea.

Antidepressants and insomnia

A sedating antidepressant makes sense for patients with insomnia and depression, but just as important is how that antidepressant affects sleep quality. Mirtazapine and trazodone are two antidepressants that help patients fall asleep and improve their sleep architecture. However, mirtazapine’s sedative effects are greater in the lower dose range (15 mg and below), which may not treat depression. Trazodone also has limitations. Its sedative effects tend to wear off over time, and it comes with risks including daytime fatigue, reduced recovery rates in depression (a paradoxical phenomenon seen in adolescents), and dry mouth─which itself may interfere with sleep.

Some atypical antipsychotics have sedative effects, particularly quetiapine (Seroquel). Quetiapine carries too many risks to recommend it for primary insomnia, but it is appropriate for antidepressant augmentation (150 to 300 mg qhs). Quetiapine is not just sedating. It also improves the deep, restorative phase of sleep.

The SSRIs can cause insomnia and worsen sleep quality, but bupropion is surprisingly more favorable for sleep. Although it is activating in the daytime, bupropion causes no more insomnia than the SSRIs and has neutral or positive effects on sleep architecture. Most of the tricyclics have similar problems as the SSRIs. Two exceptions are amitriptyline and doxepin. These sedating tricyclics can help with sleep initiation, but they do not improve sleep architecture.

One hypnotic that Dr Rao warned against is diphenhydramine, the sedative ingredient in many over-the-counter sleep aids from Benadryl to Tylenol PM. The problem is that diphenhydramine worsens cognition in the short term and raises the risk of dementia with chronic use. Its anticholinergic and histaminergic mechanism is the likely culprit here. Hydroxyzine (Vistaril) has similar effects and probably carries similar risks. Dr Rao pointed out another limitation of diphenhydramine: its sedative effects tend to wear off after 3 weeks.

Antidepressants in restless legs syndrome

RLS is common in two conditions that often co-occur with depression: ADHD and PTSD. Although serotonergic antidepressants can cause RLS, bupropion appears to treat it, according to a randomized controlled trial. Another medication to watch for in patients with RLS is mirtazapine. Although it is often used for insomnia, in some studies the risk of RLS is greater with mirtazapine than with other antidepressants.6

Finally, there is an FDA-approved treatment for RLS that can treat depression as well: pramipexole. In small, positive controlled trials in both bipolar and unipolar depression, this dopaminergic agonist worked as monotherapy and as augmentation. The dose for depression (1 to 2 mg qhs) is higher than the typical RLS dose (0.125 to 1 mg qhs).

Obstructive sleep apnea is the only sleep disorder in which SSRIs may have an advantage. Most apneas occur during REM sleep, and SSRIs suppress this phase of sleep. SSRIs may also improve sleep apnea through direct effects on smooth muscle in the upper airway. These theoretical advantages translated into clinical benefits in a handful of studies. The same cannot be said for mirtazapine. That antidepressant was once thought to improve sleep apnea, through smooth muscle effects, but the theory did not hold up in practice. The risk of weight gain associated with mirtazapine also makes it less desirable in this population.

Sleep apnea is more common in overweight, middle-aged men with thick necks, but another type of patient is breaking this stereotype. Newer studieshave identified alarming rates of obstructive sleep apnea (40% to 75%) in PTSD. These patients tend to be young and thin, so how can they have sleep apnea? The exact cause is unknown but may be related to the effects of PTSD on autonomic hyperarousal and pharyngeal smooth muscle.

Although insomnia is common in patients with obstructive sleep apnea, hypnotics─particularly benzodiazepines─can suppress breathing and worsen hypoxia in these cases. Dr Rao recommends clonidine for insomnia in apneic patients. Besides its sedative effects, clonidine decreases the apnea-hypoxia index, a key outcome measure in obstructive sleep apnea. Clonidine reduces nightmares in PTSD and also improves a nocturnal impairment often seen in depression: sleep fragmentation.

The bottom line

No single antidepressant is best for sleep, but each has properties that can help or harm depending on the patient’s sleep disorder. Selecting the right one can improve daytime functioning and lead to a fuller recovery.

Restless Legs Syndrome: The new Cure? Channel 5, 6th March

Many of you will have seen Channel 5's "Restless Legs Syndrome: Desperate for Help" in April 2017. Following its transmission, we fed your feedback to Channel 5 and the production company.

A new programme "Restless Legs Syndrome: The new Cure?" will be aired on Wednesday, 6th March at 9pm on Channel 5. As we are sure you will appreciate, we are uncomfortable with the title as there is NO cure for RLS. However, we have no control over the title which Channel 5 have assigned to the programme.

RLS-UK was invited to participate in the production of the programme but we declined, primarily because we were told we would have no influence on the content or tone of the programme. The title "The New Cure?' validates this decision as we would never have supported the inference that there may be a cure for RLS.

The last programme was watched by over 750,000 people and we saw a surge in enquiries and visits to our website, which meant a lot of people who had struggled with RLS finally found help. This was a significant positive of the last programme and we hope to see the same when this new programme is transmitted.

We look forward to sharing your feedback with Channel 5 and the production company.

Restless Legs: Why behavioural issues may be linked to your child's sleep

He's a boy. He gets distracted easily. He's emotionally sensitive.

These are the excuses Courtney Waltz would tell herself when she tried to understand her son, Shane, and his behavior.

Too often, she would see his sweet nature disappear as he would get frustrated and melt down.

One day, his teacher sent home a video she took during nap time on her phone. The video showed Shane repeatedly moving his legs and then hitting himself on the head as he slept.

"It kinda freaked me out," Waltz said. "After I saw that, I started to pay a little more attention to what was going on at night, and it wasn't normal."

Waltz took Shane to the doctor and explained what she was seeing night after night.

"He was kicking himself awake, there were periods of time where he just did not stop moving," she said.

Dr. Ameet Daftary, a sleep specialist, ordered a sleep study. It revealed sleep fragmentation, restlessness during sleep and a lot of leg movement.

Dr. Daftary diagnosed Shane with restless leg syndrome after reviewing the study and listening to Shane describe how his legs moved.

"He did not have sleep apnea. But what is interesting is he... complained about leg pain which is not something that a lot of 5-year-olds actually do, so that really helped us get to his diagnosis."

Shane told him his legs felt itchy and that scratching didn't help.

Dr. Daftary said the syndrome often runs in families and a majority of patients report having at least one affected first-degree relative.

Shane now shares the diagnosis with his father.

"My legs get tired, and they get sore. I feel like something has bitten me; for some reason they are itching all over the place," Shane said.

Dr. Daftary said restless leg syndrome is more common in men than women.

"It's an irresistible urge to move the legs. It's present in about two to six percent of the population of children and much higher in adults. It can be expressed as creepy crawlies in the legs, ouchies, owies, hot and cold sensations, my legs can't stop, even growing leg pains. These are all the common terms that children use to describe their symptoms," Dr. Daftary said.

He said the movement disrupts sleep and that impacts what happens during the day at work and school. Shane feels it.

"I try to focus on my work, and then I feel tired," Shane said.

Doctors said behavior issues are frequently reported in children with sleep disorders.

"That can manifest with just moodiness, crankiness, irritability, but it can also be in the form of attention deficit problems and sometimes school under performance. The teachers don't know that the child is not sleeping well," Dr. Daftary said. "Poor sleep quality is...a big deal because many children have actively growing brains all the way up to age 21, and so you have poor sleep quality during the phase when your brain is actively developing. We do know that several studies that have shown sub-optimal cognitive performance in these children as compared to children who don't have sleep disturbances. You could potentially permanently be setting these kids up for some kind of sub-optimal performance for the rest of their lives," he said.

Once Waltz learned that some of Shane's disruptive behaviors were linked to sleep, she felt she could be a more compassionate mother and focus on the fix.

"A lot of the issues that he was having hyperactivity and then oversensitivity. He would bump his knee and then it would become this gigantic meltdown. It turns out that was all because of the sleep. I thought this was a personality thing and it was, he was severely sleep deprived," Waltz said.

Doctors said it's common for patients diagnosed with restless leg syndrome to have abnormal iron levels and adding iron can alleviate symptoms.

"We can actually treat with iron supplementation, which tends to be very effective," Dr. Daftary said. "It works in almost 80 percent of children."

Shane first took oral iron supplements, and now he gets iron infusions.

"He is one of the class patients where as long as his iron levels are maintained adequately, his symptoms go away," Dr. Daftary said. "Shane had sleep walking. Shane had poor sleep quality. Shane had a lot of leg discomfort, bed wetting, all of these were significant factors impacting his quality of life. All of these factors significantly improved once we started treating him."

The doctor said parents play a key role in getting a diagnosis, adding sleep is not a standard screening question pediatricians will ask during a well-child visit. "Unless the family brings this up, this may actually be a significant quality of life issue that may not be addressed," he said.

Nights and days now are much better for Shane. With treatment, his iron levels are stabilizing, and Waltz wishes she would have sought help sooner.

"My suggestion would be, if you are seeing something that doesn't feel right, or doesn't seem right, you need to talk to somebody," she said. "I can own that I let this go for too long."


Source: https://www.wthr.com/article/restless-legs...

Presentations from the RLS-UK 2018 Annual General Meeting

Our 2018 Annual General Meeting took place on Saturday, 1st September at the National Council for Voluntary Organisations (NCVO).

We have brought together some of the presentations from our guest speakers on the day:

* Joke Jaarsma, past-president of the European Alliance for RLS (EARLS). Joke is now President of the European Federation of Neurological Associations (EFNA) and also Treasurer of the Board of the European Brain Council. You can download and view Joke Jaarsma’s Presentation here

* Dr. Dhaval Trivedi, Research Coordinator as well as fellow working on several projects in non-motor issues at King’s College Hospital. You can download and view Dr. Trivedi’s Presentation here

* Dr Kirstie Anderson, a consultant neurologist who runs the Regional Neurology Sleep Service at the Royal Victoria Infirmary in Newcastle. You can download and view Dr. Anderson’s Presentation here

* Dr Julian Spinks, GP, Writer and Vice Chairman of Kent Local Medical Committee and medical advisor to RLS-UK. You can download and view Dr. Spinks’ Presentation here

* Dr Yi Min Wan, Research Student at King’s College Hospital. You can download and view Dr. Yi Min Wan’s Presentation here

Restless Legs Syndrome (RLS) is a major burden on healthcare budgets in Europe


A new report from the European Brain Council reveals poor diagnosis and treatment of Restless Legs Syndrome which makes it one of the most costly neurological disorders in Europe.

Restless Legs Syndrome (RLS) is a serious neurological disorder which has a high prevalence but is very often not recognized or even diagnosed as a disease, leading to delayed diagnosis and/or wrong treatment. This, in turn, brings unnecessary suffering to patients, a significant cost to healthcare budgets in Europe and costs to wider society. Frequently, RLS is not diagnosed due to lack of knowledge among healthcare professionals, and patients are left with no option but to suffer. Equally concerning is the frequency of misdiagnosis, where patients are prescribed incorrect and inappropriate therapies.

The Value of Treatment for Brain Disorders in Europe study, conducted by the European Brain Council (EBC), the European Academy of Neurology (EAN), the European RLS Patients Alliance (EARLS) and the European RLS Study Group (EURLSSG), in consultation with a team of researchers and experts from the London School of Economics, discovered that the treatment gap for RLS is very high. The total cost of poor diagnosis and treatment of RLS in the countries analysed (Germany, Italy and France) is significantly higher than the combined cost of Parkinson’s disease, Multiple Sclerosis and Epilepsy in these countries, partially due to the high prevalence of RLS.

The report highlights the importance of early detection and intervention, and the urgent need for proper education of healthcare professionals about RLS. The report also highlights the need for research into the cause(s) of RLS and for new treatment pathways to be identified to reduce patient suffering. 

The European Union spends just over three euro per year, per patient, on brain research, and access to treatment in many member states is getting worse, not better. According to an analysis carried on in 2010, neurological and mental disorders affect 165 million Europeans, with an overall cost of about €800 billion per ar. The Value of Treatment for Brain disorders in Europe study covered a range of mental and neurological disorders among which Schizophrenia, Alzheimer’s disease, Headache, Multiple Sclerosis, Normal Pressure Hydrocephalus, Stroke, Parkinson’s disease, Epilepsy and Restless Legs Syndrome, and highlighted the full cost of unmet healthcare needs, recommending new investment in research, earlier detections and interventions and better treatment for neurological disorders.

Visit the European Brain Council website for more information


What Is Augmentation?

Restless legs syndrome (RLS) augmentation is a formidable foe. It describes a not-uncommon phenomenon in which—after weeks, months, or years of a patient’s RLS (also known by the newer name of Willis-Ekbom disease) being well controlled by a dopamine drug—the symptoms become more intense, take less time to occur when at rest, manifest earlier in the day, return more quickly after taking therapeutic medication, and may spread to other parts of the body.

This article, written by Dr. Mark Buchfuhrer, is one of the best we have read!


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