I have severe PLMS and have had an iron infusion (ferritin level remains good five months later), pregabalin 100mg (couldn't cope with the side effects) and ropinirole 1mg. I barely slept for the month I was on ropinirole and, from what I can find here and on the net generally, this isn't usual. So I wondered if anyone else had experienced this with dopamine agonists generally or just on ropinirole?
After the ropinirole my consultant gave me melatonin at my request, because I came across a recommendation for its use in patients who have only PLMS (not RLS) in best practice guidance issued by the British Medical Journal. It is not available over the counter here in the UK and is off-label for PLMS/RLS and doctors are very reluctant to prescribe it. (As an aside, my gp refused to give me a prescription to cover the two week gap between the consultant's prescription running out and my next appointment with her, although he quite happily gave me diazepam (vallium) to help me with the stress of not melatonin. The NHS has gone mad...but I just ordered melatonin online from the US anyway.)
The melatonin definitely helps me to get to sleep, reduces the amount of arousals, and makes it easier to fall back to sleep from arousals. However, it is not stopping the PLMS and my sleep remains unrefreshing and the pain in my legs is even worse than usual. I guess if I am spending more time asleep that equals more leg movements and more pain!
I suspect my consultant is going to want to try pramipexole or neupro patches next and I am really worried that they will have just the same effect as the ropinirole, ie wide awake all night with a period of fitful REM sleep just before the alarm clock goes off.
If anyone has any experience of insomnia with ropiniriole or other DAs I'd be really grateful to hear about how you overcome it what drugs might have worked better for you.
Thank you as always for all the knowledge and support there is on this forum x
I had the opposite effect with pramipexole. Found it hard to stay awake. I was on a high dose however which is NOT recommended. Glad the melatonin is helping. There is some suggestion (and anecdotal evidence) that it exacerbated rls in some but for sure waad (we are all different) when it comes to this disease.
It may be worth trying a different DA. If you do, I would start with Neupro, due to its lower risk of augmentation. Also, you might consider an alternative to Lyrica in the same class, such as gabapentin. I have tried both for extended periods of time. I came back to gabapentin after having some worrisome side effects on Lyrica, such as balance issues (felt like I was about to fall sometimes) and blurred vision in AM. I know that people tend to favor Lyrica because it's better absorbed, but that doesn't take the side effects issue into consideration. Same with DAs: they each can have different side effects. And for any of these drugs, side effects can vary widely depending on the individual. Good luck!
Thanks ID and Optimist. I guess the answer is not to be scared about trying another DA (or gabapentin) as it might not have the same effect. That is reassuring, thank you.
I suffered augmentation on the Neupro patch after a couple of years. I have suffered from insomnia for most of my life but now I’m on GAberpentin it’s helping to make me drowsy at night (although this has started to wear off after about nine months)
it’s 4am in the morning and here I am. Guess I found the right place. I’m taking ropinirol for RSL and it mostly works at 0.5mg. But I wake up at 1.30 in the morning and cannot fall asleep again. And it’s made my RLS 10x worse when I don’t take it. After several weeks of this I was falling apart from lack of sleep and asked GP for help. They offered pregabalin. I declined. Takes a month to kick in and I was not prepared to go through a month without sleep and with severe RLS. Saw a private doc who gave me Zoppies to wean myself off ropinirol. Sleep at last but only when take both ropinirol and zoppies together. I can stay awake all night thrashing and writhing on just the zoppies. So, I have found a medical solution to my problem - take both. Only trouble is, I’m told I should only take zoppies for two weeks or a face addiction issues. So it seems I can choose between functioning drug addiction or insomnia. All these issues will hopefully go away when I get a kidney transplant hopefully in less than a year. Apart from the addiction I have to look forward to.
Last night I tried taking half a zoppie and here I am, writing on a forum about sleep issues at 4am in the morning.
Hi Tired, because of your condition, which elevates a hormone called hepcidin, you might actually be anemic which is making your RLS worse. Yet I bet your ferritin is high. Called anemia of chronic disease. For a long complicated reason, I recommend trying 50mg of ferrous bisglycinate (on Amazon called Gentle Iron by Solgar) on an empty stomach about an hour before bed. It should provide a good amount of relief in one hour and because of the glycine in it make you sleepy. If you don’t get substantial relief that first night you might want to consider continuing on with the oral iron (though I would lower to 25mg) and discuss with your doctor. Feel free to look at my other posts for an explanation as to why this works. I hope you also know that SSRIs, melatonin, statins and calcium channel blockers can make the symptoms of RLS worse.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
UK - PLMT disorder diagnosis
PLMs after 12am (Circadian Rhythm?)
WEIGHTED BLANKET 
How do i change from Ropinirole to Pramipexole
Experiences of Pregabalin v Gabapentin please 
