Is the Only Drug for Restless Legs Syndrome Responsible for Patients’ Suicidal Thoughts?

Campaigners warn that the main treatment for people suffering from painful restless legs syndrome could permanently worsen symptoms.

The condition, which affects up to 10 percent of the population and is more common in women, causes an unpleasant “crawling” sensation in the legs, especially at night, and an almost irresistible urge to move.

For those worst affected, it can disrupt sleep, damage mental health, ruin relationships and careers. But drugs called dopamine agonists, often prescribed by doctors to ease symptoms, can actually make things worse for up to half of patients, research shows. In some cases, the effects can’t be reversed.

The charity RLS-UK describes the situation as “an appalling medical scandal” and says many people are left with unbearable symptoms even after increasing the dosage of the drugs to the maximum to end their suffering.

Others develop strange addictive behaviors, such as gambling or compulsive shopping, the report said.

In one shocking example, Joeli Brearley (pictured), 45, became suicidal after being forced to repeatedly increase her dose of a dopamine agonist called ropinirole – which worsened her symptoms so much she was unable to sleep for days

Mrs Brearley, a mother of two from York who founded the campaign group Pregnant Then Screwed, which campaigns for mothers’ rights in the workplace, first sought help from her GP three years ago after her restless legs symptoms became severe following two pregnancies.

In one shocking example, Joeli Brearley, 45, became suicidal after being forced to repeatedly increase her dose of a dopamine agonist called ropinirole – worsening her symptoms to the point she was unable to sleep for days.

Mrs Brearley, a mother of two from York, founded the campaign group Pregnant Then Screwed, which campaigns for mothers’ rights in the workplace. She first sought help from her GP three years ago after her restless legs became severe after two pregnancies.

‘At first it was a miracle drug,’ she says. ‘I used to have to jog and watch TV in the evenings, and I would often walk around or do squats in the middle of the night because the tingling sensation in my legs kept me awake. After taking ropinirole the symptoms disappeared and I slept like a baby. It was great. But they slowly came back and the GP kept advising me to increase the dose.

‘I ended up on the maximum dose and it was like I wasn’t taking them at all. It was horrible – I wasn’t sleeping and I was desperate. I was a mess.’ So she decided to go ‘cold turkey’ to get off the drugs – but her symptoms quickly worsened. Her knees felt like they were ‘being stabbed repeatedly’ and she would get up every few minutes to walk around the floor. She was getting so little sleep that she started hallucinating and having intrusive thoughts.

At first the drug was a ‘miracle cure’ but soon Mrs Brearley said she had trouble sleeping while taking the drug

‘It was torture,’ she recalls. ‘My partner kept finding me sobbing on the floor. I was pulling knives out of drawers and thinking about stabbing myself in the legs. I thought about overdosing so it would be over. I was so close to doing something harmful. But when I called my GP to say I didn’t think I would survive, they told me to go back on the medication.’

The cause of restless legs syndrome is unclear, but it is thought to involve a disruption in the way the chemical dopamine, which helps control muscle movement, is transported in the brain.

Low iron levels, which play a role in dopamine production, may be a factor, which is why one in four women develop RLS during pregnancy. In fact, people with RLS may need higher iron levels in their bodies than others, experts say.

Dopamine agonists work by ‘tricking’ the brain into thinking it is getting the dopamine it needs. They are also prescribed to control symptoms of Parkinson’s disease.

According to an RLS-UK study of more than 3,000 people with RLS, 65 percent of those who had been taking dopamine agonists switched medications because their symptoms worsened. This worsening is known as “augmentation.”

Ms Brearley, who takes codeine to manage her symptoms, paid £600 for an iron drip at a private clinic earlier this month, although it is too early to say what difference it has made

Dr Julian Spinks, a GP in Kent and a trustee of RLS-UK, said: ‘Dopamine agonists are absolutely brilliant at treating the condition in the first instance. But they seem to be associated mainly with augmentation. Most clinicians don’t understand that they are feeding into this process by increasing the dose.

‘To deal with it, you often have to stop taking the medication. That means you get withdrawal symptoms and the RLS symptoms get much worse.’

The American Academy of Sleep Medicine is updating its guidelines and will no longer recommend dopamine agonists for the treatment of RLS.

Other treatments for RLS include the epilepsy drugs gabapentin and pregabalin. But these often don’t work when given after dopamine agonists, the charity says.

Ms Brearley, who takes codeine to treat her symptoms, paid £600 for an iron drip at a private clinic earlier this month, but it is too early to say what the difference is.

Julie Gould of RLS-UK said: ‘We want GPs to be better trained to understand RLS and the problems associated with dopamine agonists. We also want to see much more research into this condition.’