YOUR STORIES
Personal stories play an important role in helping others understand the realities of dopamine agonist side effects and their impact on individuals and families. Many people have told us that sharing their experiences helped them make sense of what happened, feel less alone, and contribute to greater awareness and understanding of these harms. For some, there has been a profound sense of relief in finally being able to speak openly about experiences, behaviours and consequences they had kept hidden for years.
Please contact us if you would be interested in sharing your story. Contributions can be anonymous, partially anonymous, or fully attributed.
David and his dad, Alan
I want to share a particularly harrowing story about my dad, Alan, and what happened to him here in Doncaster, UK.
In 2005 my dad was put on a dopamine agonist medication for restless legs syndrome. Within months he’d put on significant weight and, in his own words, “developed a craving for sweet foods”. At the same time his depression worsened, his sleep deteriorated, his legs swelled with fluid, and he became short of breath – all now recognised as possible side effects of these drugs.
Read the full story here.
Lucy
When I was 25, I took a fateful job in London. I had graduated Newcastle university in mathematics and taken a graduate job in Essex before the move. The pressure of London workloads and a predisposition to mental heath problems due to my mother’s bipolar, led to a breakdown a year later. I was hospitalised and ended up on the drug Arirpiprazole which caused me to have compulsive behaviours.
One lunchtime at my new job back home in Essex I saw a scratchcard out of the corner of my eye which said ‘rich for life’. I had never bought a scratchcard before but I felt completely devoid of hope. I had lost my career and my future and wanted a cheat to get to the future I’d worked so hard to get to. That first scratchcard I won £100 but after a short time I was filling my car glove compartment full to the brim.
Read the full story here.
Pat
In September 2009 I went to my doctors armed with information on RLS, he had heard of it but didn’t have much knowledge of it. He told me that he had a couple of other ladies suffering with something similar and that they were on a drug called Ropinirole and were very pleased with how well it was helping with RLS and their sleeping.
He did not advise me of the many side effects of the drug, like Ropinirole being a Dopamine Agonist which can cause Augmentation and possibly a gambling addiction. The only advice I ever got from my doctor when I went to see him regarding my gambling, and that was on many occasions, was for me to attend Gamblers Anonymous. Again, he never advised me that the tablets and my gambling were connected in any way even though I told him I had never gambled in my life before taking them. Obviously if I were made aware of these horrendous side effects I would never have taken a dopamine agonist. So I took them not knowing what devastation they were about to have on my body.
Read the full story here.
Julie
I was prescribed Ropinirole, a dopamine agonist, by my previous MS neurologist in around 2008 for RLS. At first it was miraculous. No more unbearable creepy, crawly sensations in my legs, waking me several times a night.
At the time I was prescribed ropinirole, I was not warned that dopamine agonists could cause a drug-induced worsening of RLS symptoms known as augmentation. There were no reports of dopamine agonists making the symptoms of RLS more severe. I was never warned about augmentation at any later review and my MS neurologist and GPs never monitored my symptoms. I was certainly never warned that dopamine agonists could cause Impulse Control Disorder. If a doctor had warned me that taking ropinirole would eventually cause a very severe worsening of my RLS symptoms and that it carried a very high risk of causing uncontrollable eating, spending, gambling and hypersexuality, I would never have agreed to take it.
It wasn't until 2016 that I discovered I was experiencing severe augmentation. The withdrawal process that followed was the most brutal and difficult experience of my life.
Read the full story here.
For journalists and media enquiries
We ask journalists to respect the privacy and wellbeing of those sharing their stories and not approach people here directly. Some of the individuals and families we support are in vulnerable circumstances. Any media enquiries should be made through our organisation, which can help facilitate contact where appropriate and ensure that participants are properly informed, supported, and protected from intrusive or sensationalised coverage.