Dorothy Moate is regularly overcome by such insatiable compulsion to eat that she’s been known to start baking a cake at 2am.

‘It was carrot cake this morning,’ Dorothy, 74, a retired teaching assistant from Plymouth, told Good Health. ‘I absolutely have to bake – not a day goes by when I don’t. Then I eat what I’ve baked,’ she says. Even ten minutes after a big meal she starts to feel hungry again and has to eat more.

Eating is not her only compulsion. Dorothy is also regularly affected by an uncontrollable urge to shop, and her home is festooned with piles of new clothes that she does not need – and more than 50 pairs of shoes.

Dorothy wasn’t always this way. Until recently, she had a modest appetite and weighed a trim 8st, and only bought clothes she actually needed.

She says the urges were triggered by drugs prescribed by her doctor – and she is now struggling to wean herself off them.

The medications in question, called dopamine agonists, are widely used to treat restless legs syndrome (RLS), a common neurological disorder affecting an estimated five million people in the UK, which causes an irresistible urge to move the legs.

It is often accompanied by uncomfortable sensations (such as crawling, pulling or tingling) that are triggered by rest or inactivity and worsen in the evening. In most cases the cause is unknown.

The impact can be life-changing, as Dorothy explains: ‘RLS wrecks your sleep – and consequently your waking life – as you can’t stop this constant moving.’

Dorothy Moate is regularly affected by an uncontrollable urge to shop, and her home is festooned with piles of new clothes that she does not need

But what she didn’t expect was that the drugs she was given to combat RLS would wreck her life in other ways, as a result of a known potential side-effect – impulsive and compulsive behaviour.

Worst of all, she says, is that after nine years of taking them, she’s struggled to come off them because of a crippling withdrawal symptom: severe anxiety.

Campaigners say many others with RLS find themselves in a similar position. A petition calling for an inquiry into dopamine agonists says some patients have faced ‘ruined finances, family breakdown, dangerous impulse-control disorders, physical decline… and, in some cases, criminal proceedings’.

Others have ended up taking legal action. In 2024, Philip Stevens, 66, from Hampshire, received a £70,000 payout from his GP after being prescribed a dopamine agonist for RLS without being told of the risks it posed.

He subsequently developed an impulse-control disorder that led to him spending thousands on gambling websites and expensive clothes which he hid from his wife.

The number of patients who could be affected is huge. Dopamine agonists are not only prescribed for RLS, but also to treat Parkinson’s disease, hormone-secreting pituitary tumours and even depression.

There are more than a million prescriptions issued in England alone for these drugs each year. But it’s feared that the number of people taking them is increasing – without them being aware of the risks.

Data from NHS England shows that, in 2021, prescriptions for the three most commonly dispensed dopamine agonists – pramipexole, ropinirole and rotigotine – totalled 1.26 million; in 2025, that had risen to 1.37 million.

Dopamine agonists mimic the effects of dopamine, a brain chemical that helps regulate physical movement. The problem, as numerous studies show, is that dopamine also serves as a powerful ‘reward’ chemical in the brain.

It spurs us to repeat actions that previously have sparked feelings of pleasure or success.

This in turn can fuel impulsivity and addiction. Indeed, impulsive behaviours – including gambling, shopping, eating and inappropriate sexual acts – have long been recognised as side-effects of dopamine agonists.

These side-effects are experienced by 6 to 17 per cent of RLS patients taking the drugs, according to the National Institute for Health and Care Excellence (NICE), the UK medicines watchdog.

And now mounting evidence shows that all patients, regardless of their medical problem, are at risk from the drugs.

For example, among patients prescribed them for Parkinson’s disease, one in six is affected by impulse-control disorders, according to Parkinson’s UK.

Such is the growing concern that in 2024 the American Academy of Sleep Medicine recommended that dopamine agonists not be used as a first-line treatment for RLS.

Yet the Dopamine Agonist Action Group, a new volunteer-led campaign, warns that UK patients are seldom warned of these potential dangers by their doctors (and they say the medicines’ information leaflets have failed to highlight the dangers adequately).

This tallies with Dorothy’s experience. Having initially developed RLS when pregnant with her first baby at 35, she says ‘all the fidgeting robbed me of sleep – but after I had the baby the restless legs stopped’. (This often happens with RLS related to pregnancy.)

However, the symptoms returned during the menopause.

‘I was bringing up two children and working as a teaching assistant,’ says Dorothy. ‘Restless legs robbed me of sleep, which made it very difficult to do my attention-demanding job.’

She and her husband of 40 years, Roy, 72, a retired associate professor in electron microscopy, had to move into separate bedrooms ‘so that his sleep was not disturbed’.

Dorothy finally turned to her GP for help in 2017. ‘She didn’t know much about RLS, so she looked it up in a big book and then pronounced that a drug called pramipexole would tackle my symptoms,’ Dorothy recalls.

Pramipexole is used to treat the symptoms of moderate-to-severe RLS, as well as Parkinson’s.

‘The GP made no mention of any potential side-effects,’ says Dorothy, ‘so I was happy to take it.’

In fact, the drug-safety leaflet spells out that impulsive behaviours – such as sex, shopping and gambling addictions – are possible side-effects, although ‘uncommon’, suggesting they affect fewer than one in 100 patients.

Dorothy was prescribed pramipexole for her restless legs syndrome (RLS). ‘The GP made no mention of any potential side-effects,’ she says, ‘so I was happy to take it’

But apart from the behavioural changes, there is another potential problem for people with RLS in particular – it can make their RLS symptoms worse.

This is known as augmentation and is thought to be caused by the drugs desensitising the dopamine receptors in the patient’s brain, so they have even less control over limb movement. Researchers warned about this in the journal Frontiers in Neurology in 2023.

Augmentation can affect up to 70 per cent of patients using dopamine agonists for eight to ten years, according to a paper by the US Restless Legs Syndrome Foundation published last month in the journal Mayo Clinic Proceedings.

Dorothy was blissfully unaware of the risk she faced when she started taking the drugs. She didn’t read the safety leaflet, not least because – like many of us – she expected her GP to warn her about any significant problems.

‘The drug worked instantly – the first night I had no symptoms,’ she says. ‘The doctor said I could increase the dose from the standard initial 88mcg if I needed to, so when the restless legs returned after about a year, I tried steadily increasing the dose. 

‘But the symptoms got worse, which I now know is a recognised problem called augmentation. Things got so bad that the symptoms would begin earlier and earlier – starting in the afternoon and lasting through the night. I got practically no sleep.

‘During the afternoon and evening I would be pacing the floor and taking hot showers, just to try to relax myself. When I complained to my GP, she was baffled. She didn’t know about augmentation.’

So, in 2019, Dorothy paid to see a doctor privately and was put on another dopamine agonist drug called ropinirole. But this made matters worse. As well as still suffering persistent RLS symptoms, Dorothy developed compulsive behaviours.

‘Gradually I started eating more. Ten minutes after finishing a meal I would feel hungry again. My weight had always been 8st 6lb and now it is over 10st, which makes an awful difference because I am only 5ft,’ she says.

Then a new compulsion emerged. ‘Alongside the eating, compulsive shopping began to creep in,’ Dorothy adds. ‘I can’t stop myself from going online to buy clothes and shoes, and then more clothes and shoes.’

These kinds of problems have long been recognised. Back in 2011, for example, neuroscientists at the University of Cambridge warned in the journal BMC Neurology that RLS sufferers are prone to developing impulsive behaviours under the influence of dopamine agonists, because the drugs affect the limbic system in the brain which regulates emotions and motivation.

In March – in response to campaigners’ pressure – the UK drug safety watchdog, the Medicines and Healthcare products Regulatory Agency (MHRA), announced it would be changing the degree of risk of impulsive behaviours from ‘uncommon’ to ‘common’ – meaning these side-effects occur in between one in ten and one in 100 people.

In July, Preet Kaur Gill, then Under-Secretary of State for Health, replied in a written parliamentary answer to questions about dopamine agonists that ‘the MHRA is currently reviewing whether further action is needed to raise awareness of the existing warnings about impulse-control disorders with dopamine agonists’.

Meanwhile, for those already on the drugs, NICE says doses should be reduced if patients show signs of impulse control disorders (ICDs): ‘If a person develops an ICD, the dopamine agonist should be withdrawn or the dose reduced until the symptoms resolve.’

However, experts say patients should not abruptly stop dopamine agonist drugs as this can cause severe withdrawal symptoms.

In a paper for the Open University Press in 2024, Andrew Spector, an associate professor of neurology at Duke University in the US, warned: ‘Dopamine agonists must be weaned off. The process can be brutal: insomnia, severe pain, anxiety, depression, thoughts of suicide and more.’

This is echoed by David Williams, one of the four co-founders of the Dopamine Agonist Action Group, which was formally established two months ago.

He told Good Health: ‘Neurologists are now labelling this problem dopamine agonist withdrawal syndrome.’

Symptoms of withdrawal can be so gruelling that some patients have never been able to stop fully, even though they followed advice to taper slowly, he adds.

‘They are left trapped with ongoing impulse-control disorders caused by a drug that is making their RLS symptoms worse through augmentation.’

Dorothy knows this terrible fact too well. ‘I’ve tried several times to taper off the dopamine agonist,’ she says. ‘The recommended tapering strategy is to halve the dose every two weeks until you get down to virtually nothing. However, I am currently taking 3mg daily because I had been upping the dose to stop the RLS symptoms.

‘Now at each attempt to cut down from this, after three weeks of tapering, I suffer such terrible anxiety that I have to give up.’

Dorothy’s case is sadly typical of untold thousands of other British patients, says David Williams.

‘We’re a grassroots group built by patients and relatives trying to push for change, and the stories we’re collecting show the same pattern repeatedly: catastrophic gambling and spending, hypersexuality and binge eating, misdiagnosis and family breakdown – with patients and carers saying they were never properly warned.

‘Nor were they warned about symptom augmentation. These are not isolated horror stories; they are consistent failures in prescribing, monitoring and review.’

Mounting concerns about dopamine agonists have led to some changes in UK prescribing guidelines.

A spokesman for NICE told Good Health that under guideline changes last year, dopamine agonists have been replaced by gabapentinoid drugs as the first-line treatment for RLS.

These drugs, which are also used to treat nerve pain, are thought to work by calming overactivity in the brain.

The NICE spokesman said: ‘International evidence has moved away from using dopamine agonists as a first-line treatment option. Healthcare professionals should take our advice into account.’

Dorothy with her overflowing wardrobe – a result of her compulsive behaviour. She’s also got more than 50 pairs of shoes. ‘I can’t stop myself from going online to buy clothes and shoes, and then more clothes and shoes,’ she says

However, as Good Health has previously reported, gabapentinoids have their own serious potential side-effects, including breathing problems. They can also be addictive – and the UK government drug safety website warns that stopping the drugs can cause serious withdrawal symptoms, such as anxiety.

Meanwhile, the evidence shows that patients continue to be prescribed dopamine agonists without being warned of the consequences.

While formal research is scant, in March this year a bulletin for GPs issued by NHS Grampian warned that: ‘An audit undertaken within a NHS Grampian GP practice found that of 12 patients prescribed pramipexole for restless leg syndrome between July-August 2025, none had it documented in their notes that counselling on the risks was given.’

Professor Victoria Tzortziou Brown, president of the Royal College of GPs, told Good Health: ‘Patients prescribed dopamine agonists should be counselled about the potential risks, advised to report any behavioural changes promptly and have their medication reviewed if concerning symptoms develop.’

She added: ‘Dopamine agonists are still prescribed relatively infrequently in general practice and often following specialist recommendation.’

But David Williams says that prescribing is growing because the drugs are increasingly being given for depression and other mental health conditions, in the hope they can make patients feel more motivated – thanks to dopamine reward systems being bolstered.

‘Any such use is experimental or off-label, which is particularly concerning given these drugs’ known risks,’ he says.

Risk of legal action might help to curtail the rise in dopamine agonist prescribing.

Recent UK court cases – such as Philip Stevens’s – have awarded settlements where patients had not been warned of the side-effects or monitored for them.

Such cases have caused deep concern at Parkinson’s UK.

Caroline Rassell, the charity’s chief executive, told Good Health: ‘We’ve raised concerns with MHRA about how these side-effects appear in drug information leaflets. Currently they are hidden and not listed in the main side-effects, which needs to change.’

Dr Alison Cave, chief safety officer at the MHRA, told Good Health: ‘We are carrying out a comprehensive assessment to determine whether any regulatory action is required to help raise further awareness of these risks with patients and healthcare professionals in the UK.’

Dorothy, meanwhile, still has RLS that often leaves her with as little as four hours’ sleep at night. Yet she is determined to attempt to wean herself off the drugs.

‘I am going to try tapering off the drug again, even though people who’ve succeeded warn me that the final stages are absolute hell,’ she says.

‘I am very fortunate in that I have a husband who understands my compulsions and how they are due to the prescribed drugs. That’s such a great help.

‘I also have a grandchild, aged two, who I love seeing. These are great motivations to keep going – and to keep trying to get off these meds.’

Have you experienced problems with dopamine agonists? Tell us your story at goodhealth@dailymail.co.uk