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. 

By 2012, my RLS had become far more severe. I read reports, and they all said that RLS was a progressive disease that worsened with age. So, I assumed that the increase in symptom severity was normal. The progression crept up on me insidiously over the next few years. By 2014, I was having severe daytime RLS symptoms. Before, I had only experienced RLS at night. It became a family ‘joke’, my children called my constant leg jerking ‘jumpy legs’. I couldn’t sit still at the cinema or the theatre. I couldn’t watch a film at home sitting comfortably. I would have to watch while standing, moving from foot to foot. A traffic jam caused near hysteria, as I could not get out to walk around. I avoided holidays because cars, trains and planes became torture. I was in complete denial at this stage. I believed the lies that I had read, that this was a natural progression. And weirdly, I was still able to sleep at night without experiencing RLS. The symptoms had flipped. Daytime RLS- but no nighttime awakenings. 

By 2015 and 2016, I knew something was very wrong. The RLS had started to move to my hands and arms. By mid 2016, RLS symptoms had moved to my back, my stomach and my face. I was able to handle RLS in my legs by stretching, walking and jumping around. But the only way I could handle RLS in my arms, hands and face was to inflict pain. The pain was so much better than the intense, unbearable, wound up feelings of RLS. I bought a wooden ruler and would slap myself hard. It was getting completely out of hand. 

I came across the RLS-UK help forum at healthunlocked.com via an internet search in June 2016. I told my story and was advised by knowledgeable members that I was experiencing severe augmentation and that I should start doing my own research, as UK doctors knew very little about it. They recommended a book written by a top RLS expert, Dr Mark Buchfuhrer, in the USA and directed me to his website in California, where patients could ask questions and he would reply quickly. I was advised to reduce the Ropinirole very slowly and that the withdrawal would be hellish. Opioids were suggested to help settle the severe, increased RLS.

I visited my GP to ask for help and she asked me what augmentation was. My heart sank. It was clear she knew less than zero and would not be much help. I spoke to my new female MS neurologist and she said she knew absolutely nothing about RLS and that I knew more than she did. 

I made an appointment at the only dedicated RLS clinic in the UK at King’s College Hospital. But the appointment was for October 2016. I calculated that I would be completely off Ropinirole by that time and that King’s College would perhaps be able to arrange an iron infusion and opioids. It took me 3 to 4 months to get off Ropinirole. The drop from 4mg to 2mg was less hard. But when I reached 0.5mg, all hell broke loose. I had been warned by Dr Buchfuhrer that withdrawal from dopamine agonists was more difficult than getting off heroin or crack cocaine. All I can say to that is that the withdrawal was the most brutal, difficult experience of my life. I nearly didn’t make it. If my husband had not stayed up with me night after night, I would very possibly have thrown myself out of the window to end the suffering. 

After the last dose of Ropinirole, the RLS ramped up so severely that it was 24/7 with absolutely no respite. My legs jerked so violently that I thought I would dislocate my hips and knees. Rest and sleep was impossible. Moving was the only way to get some relief. On the second night, my adult children delivered some cannabis cigarettes. I don’t smoke. I’d never taken illegal drugs in my life. But I smoked the cigarettes. I honestly think they saved my life. They knocked me out cold for 20 to 30 minutes. That short sleep allowed me to keep going. 

After 3 days and nights of zero sleep, I fell asleep on my feet, and fell badly several times. I saw my GP on day 4 of no rest and sobbed, begging her for opioids. She clearly failed to recognise how serious this was. She actually said, ‘Drink some milk at night - we all get aches and pains’. I immediately called my MS neurologist and begged her for help. She emailed my GP and told her to prescribe gabapentin and tramadol. The tramadol was instantly effective and stopped the RLS for a few hours. I started the gabapentin but it caused severe stomach issues. 

The tramadol kept me going through the very difficult next few days. After 3 weeks off Ropinirole I was getting around 2 or 3 hour’s sleep a night, which was bliss after such severe sleep deprivation. The daytime RLS eased off and the RLS reverted to nighttime and just in my legs. Dr Buchfuhrer suggested I ask for Oxycontin and my MS neurologist duly obliged and wrote to my GP. I started Oxycontin but it caused panic attacks. Dr Buchfuhrer suggested adding 150mg pregabalin. My GP prescribed it and it stopped the opioids panic attacks, but didn’t make any difference to my severe RLS. My daytime RLS had gone but I was still waking twice a night with severe RLS.

In October 2016, I saw the UK’s top experts at King’s College. I was now sleeping 3 or 4 hours a night and my RLS was still very severe, but less severe than when on Ropinirole. I was horrified when the registrar recommended that I should switch to Rotigotine, a long lasting patch form of dopamine agonist. I refused to even consider it and directed the registrar to the research papers from the USA that made it clear that the only solution to augmentation was to get off, and to stay off all dopamine agonists.

I had such severe PTSD after withdrawal that I was unable to sleep with the light off for another 12 months. It took me another 5 years to find a suitable medication that controlled my severe, refractory RLS. I had to fight tooth and nail to get buprenorphine- a long lasting opioid. It has reduced my IRLS score from 38/40 on oxycontin to 0/40. Since 2021, I have not had any RLS symptoms, day or night, and I will keep campaigning to ensure other RLS patients can access the same treatment. 

It concerns me greatly that medical knowledge of RLS, dopamine agonists, augmentation and withdrawal is so poor. There are thousands of elderly RLS patients experiencing augmentation and their doctors are increasing the dose and switching them to other dopamine agonists. Augmentation happens again, very quickly. The cycle of abuse continues. Most RLS patients will need an opioid to help them through withdrawal, but most UK doctors refuse, on the outdated, incorrect belief that all opioids cause addiction and tolerance. Dr Winkelman’s Massachusetts Opioid register was set up to prove that opioids are safe and highly effective for RLS. Most patients in the study have not developed addiction or tolerance and remain on the same low dose for years. 

Julie Gould