Is the only drug for restless legs syndrome responsible for patients' suicidal thoughts?

Activists warn that the main treatment for people suffering from the agonising restless legs syndrome could make symptoms permanently worse.

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

For those most severely affected, it can cause sleep problems, psychological damage, relationships and careers. But studies have shown that drugs called dopamine agonists, which doctors often prescribe to relieve symptoms, can actually make problems worse in up to half of patients. In some cases, the effects are irreversible.

The charity RLS-UK describes the situation as a “horrific medical scandal” and says that many people find their symptoms unbearable even after increasing the dose of medication to the maximum dose in an attempt to end their suffering.

Others developed bizarre addictive behaviors such as gambling or shopping addiction, it is said.

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

A shocking example of this is 45-year-old Joeli Brearley, who became suicidal after being forced to repeatedly increase the dose of a dopamine agonist called ropinirole, which worsened her symptoms and left her 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 leg symptoms worsened following two pregnancies.

“It was a miracle cure at first,” she says. “I used to have to jog on the spot in front of the TV in the evenings and I was regularly on my feet or doing squats in the middle of the night because the tingling in my legs kept me awake. After I took ropinirole, the symptoms disappeared and I started sleeping like a baby. It was incredible. But they slowly came back and the GP kept advising me to increase the dose.

“At one point I reached the maximum dose and it was as if I hadn't taken it at all. It was awful – I couldn't sleep and I was desperate. I was at my limits.” So she decided to stop taking the drugs “overnight” – but her symptoms worsened rapidly. It felt like her knees were being “repeatedly stabbed” and she was getting up every few minutes to pace. She got so little sleep that she began to hallucinate and have obsessive thoughts.

Initially, the drug was a “miracle cure,” but soon Ms. Brearley said she later had trouble sleeping while taking the drug

“It was torture,” she recalls. “My partner kept finding me lying on the floor sobbing. I was getting knives out of the drawers and thinking about stabbing myself in the legs. I thought about taking an overdose just to make it all go away. I was so close to doing something harmful. But when I called the GP and said 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 believed to be related to a disruption in the transport of the chemical dopamine in the brain, which is involved in controlling muscle movements.

Low levels of iron, which plays a role in the production of dopamine, may be a factor in why one in four women develop RLS during pregnancy. In fact, people with RLS may need higher levels of iron 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 the symptoms of Parkinson's disease.

According to a survey of over 3,000 people with RLS by RLS-UK, 65 percent of those who had taken dopamine agonists switched medication because their symptoms got worse. This worsening is known as “augmentation.”

Mrs Brearley, who takes codeine to ease her symptoms, paid £600 for an iron infusion at a private clinic earlier this month, but it is too early to say what difference this has made.

Dr Julian Spinks, a GP in Kent and trustee of RLS-UK, says: “Dopamine agonists are absolutely excellent for treating the condition. But they seem to be particularly linked to augmentation. Most doctors don't understand that they are aiding this process by increasing the dose.”

“Treatment often requires stopping the medication, which in turn causes certain withdrawal symptoms and significantly worse RLS symptoms.”

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

Other treatments for RLS include the epilepsy drugs gabapentin and pregabalin. However, these often do not work when given after dopamine agonists, the charity explains.

Mrs Brearley, who takes codeine to ease her symptoms, paid £600 for an iron infusion at a private clinic earlier this month, but it is too early to say what difference this has made.

Julie Gould of RLS-UK said: “We want GPs to be better trained to understand RLS and the problems associated with dopamine agonists, and for this condition to be researched much more intensively.”