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Suffering from DAWS following augmentation from Ropinerole
Long, but bear with me. For my sister's condition, first, I blame doctors for their lack of the latest knowledge of prescribing Requip/Ropinerole for RLS & then years later, the suffering from severe augmentation & lack of dopamine in brain. My sister was passed from her GP to neurologist, to her oncologist (remission from ALL), to a new GP, none of which were up on what augmentation even was & how after weaning herself slowly off of Ropinerole led to DAWS (dopamine agonist withdrawal syndrome) It occurs when stopping or reducing high-dose dopamine agonists (e.g., pramipexole, ropinirole, pergolide). What made her condition worse, was trying to get iron infusions for almost 4 months due to low ferritin level of 34, which in brain from DAWS is extremely low & doctors who'd say her levels were normal. They did not know what the latest ferritin levels in brain being that low for RLS/aumentation/DAWS patients meant. Until finding a new GP who she pleaded with to do an iron panel were iron infusions ordered, but it's still too soon to see if/when it helps her. Among her debilitating symptoms are months & months of a sleep disorder, yelling out, no REM sleep, panic/anxiety, agitation, irritability, cognitive problems, insomnia & the list goes on. Not to mention the fact that she is a recovering alcoholic who started drinking again to "cope" with the daily & nightly sleep problems, which did NOT help her DAWS because the complexity of the lack of dopamine & alcohol made her resistant to the "reset" her brain needs to feel normal again. It fought with what her brain needed most- a months long process of resetting dopamine in her brain.
She was originally prescribed Ropinerole for RLS many years ago at a higher dose that she should have had, from 1 mg to 3 mg to 5 mg, much too high. Eventually, she began 'augmenting'- sleep disorder, hollering out at random, insomnia, behavioral/cognitive issues including OCD, ICD (impulse buying, spending money). The OCD involved being up all hours of the night cleaning & reorganizing things, constantly cleaning closets etc. She had also been taking Imipramine for decades along with the dopamine agonist drug until I researched the two & found that they never should've been taken together. On her own, she first slowly weaned off the Imipramine, finally after weeks of waiting to see a neurologist who knew nothing about her augmentation from Ropinerole, was even reluctant to help her wean off it & only prescribed a drug to help her sleep. So, she took it upon herself to wean off of it very slowly ending up cutting in half the 3 & 5 mg herself until she got down to '0'. It's been about 6 weeks totally off the agonizing, horrible drug, but the DAWS is still hanging on. Some improvement has happened like the OCD/ICD is better, still has the insomnia by sleeping 2 to 3 hrs at a time never getting proper REM sleep.
She was prescribed Gapapentin 2x daily for awhile then found it didn't work as a 'bridge' med, then requested to try Horizant, a form of Gabapentin that's timed release & took at 5 pm with dinner. It was really helping, but unfortunately, she began drinking more into the night, which caused a dump of the timed release Horizant to go into her system at a 65% rate faster with the alcohol rather than a slow timed release. This ended up in a trip to ER for an uncontrollable drunken event. By the way, due to bronchitis, she was given Prednisone with a z pack for bronchitis. Again the doctor didn't know the effect of the Prednisone with DAWS & the alcohol put her over the edge & off to the ER! They do not know about DAWS & even asked, what's DAWS days later when trying to check into detox, ER doctor asked what it was!
I haven't spoken much to my sister for several days because of the DAWS & alcohol mix & the ER event, trying to get detox, but then not doing it. Way too many months have gone by from the augmentation, the DAWS, the drinking & refusal to stop that it's had such a profound effect on my relationship with her, family & relationship struggles. I've been there for her throughout with doctor appointments, research, doing much of it ourselves, support, help of any kind, but it takes its toll on family to where I'm at a point where I reached my limit when it comes to the alcohol component of it.
She's 71, nearing a 5 year remission for ALL who takes Sprycel, but has been a decades long drinker who's gone from severe, abstinence, relapse after relapse, short durations of abstinence, but uses it now as a coping mechanism now for the DAWS. Years ago, I lost my trust in her, knowing she lies to me, broken promises- all the typical things families go through. We're also identical twins, very close, but that closeness has been withering away slowly. I desperately want it back, but it's a struggle.
I know it's a complex issue. We got DAWS, a sleep disorder compounded by alcohol abuse & a sister who wants so much to be better from the DAWS, but doesn't seem to understand enough with the Alcohol Abuse Disorder to say ENOUGH!
Sorry for the long read, but I'm wondering how people out there handle DAWS & particularly if suffering from DAWS along with using alcohol as a 'coping mechanism' & how you handled this complex condition.
My biggest recommendation to anyone is to stay away from Dopamine Agonist drugs for RLS & the sleep disorders it can cause & what happens years later after taking these drugs. How did your sleep improve, what did you do, how did you convince your neuro/sleep doctor, psych, gp that it is a genuine disorder??
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What a nightmare! DAWS is dopamine agonist withdrawal syndrome. I've seen it in medical articles in relation to Parkinson's--but obviously it also applies to people who had dopamine agonist drugs prescribed for RLS.
My heart goes out to you and your sister! I've nothing personal I can share, but my doctor has made it sound very difficult. No easy magic treatment unfortunately.
I also ask folks on our RLS forum who used to take dopamine agonist drugs, to please, please answer this post and describe for others how you got off of these drugs--how long this process took---where are you now in terms of sleep and controlling RLS. Thank you.
I have been suffering from DAWS since October 2025. Yes, it will be a year in October. I was fortunate to get an appointment with a psychiatrist who knew right away what my problem was. I had panic attacks, anxiety and I couldn’t stop crying. It is a one day at a time recovery. I’m not an alcoholic but I was a drinker of wine with dinner. I occasionally think I can just have one glass, and my severe symptoms come back.
Let your sister read these comments, it might help her.
Continue looking for someone that knows about DAWS and how to treat it.
@minnie528 It's been many months since your posting and I wonder if there has been any improvement.
Re-reading about your frustration and obviously love for your sister, I hope there has been. Thinking more about augmentation and DAWS, probably the most knowledgeable physicians would be RLS experts--not to say there is a standardized and effective treatment developed as yet--but they are keenly aware and see many patients thus afflicted.
Alcohol can be a difficult problem, particularly after a lifetime of drinking without it being problematic. I know three functional-alcoholics in their 70s and it is so unhealthy and dangerous in a number of ways. There is a deeply ingrained "not wanting to stop" and "can't stop" combination that can be impenetrable to the most loving attempts to help. It would seem the best advice (for you) could come from ALNON.
Wishing you and your sister the best.
Sorry--I meant AL-ANON...
@missjb I'm happy to report that my sister has been alcohol free now since first half of May, she sees 2 therapists & is doing great. DAWS subsided, but life prior was a living hell for her including a sui*** attempt, 3 calls to 911, 72 hr inpatient detox, & all throughout that, not ONE doctor or therapist could relate to the DAWS. Giving it time, her ferritin levels finally went up after 2 infusions (a big contributor), the Ropinerole was out of her system, was put on Horizant & Campral (sp) for alcohol disorder. She's now sober, has gained weight, & has made aa 180 degree. DAWS IS real & no one knows anything about it, but in her case too, the alcohol was a big contributor of making it worse. Please Google the 2 interracting if you want it explained, but I finally feel I have my sister back. Oh, no more RLS either! Thank you for caring enough to ask.
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1 Reaction@minnie528 That is the BEST news! Thank you, so much, for letting us all know.
I'm sure getting from point A to point B was not the easiest journey, but your sister's story is a wonderful reminder of what can be accomplished.
I tend to believe in looking for answers (as opposed to giving up because something is difficult).
From your posting, it was apparent that you educated yourself and then problem-solved from there. A big woo-hoo for the kind of sister you obviously are and the outcome you helped bring about!
Alcohol is not an innocuous substance although it is ubiquitous in our culture. When I started to take medication for my RLS (buprenorphine) and read that alcohol was not compatible, I never had alcohol again. I believe in reading the pharmacy handouts and paying attention to any warnings. Your sister's experience shows why this is important.
I don't know if you realize, the dopamine agonists drugs like Ropinerole have been banned in the UK (United Kingdom) as treatment for RLS because those drugs have been linked to a loss of inhibitions--causing people taking those drugs have poor judgment about spending money (and having sex) in ways that are out-of-character. Someone on this forum verified this with her own experiences.
Although most articles in the Medical literature about DAWS relate to Parkinson's, not RLS, it is most definitely real (and horrific, from what I've read and from what you described).
To others reading this: don't give up. Look for solutions and believe you can dig ourselves out of the toughest of problems--just as minnie528's sister has done.
@minnie528 thank you so much for sharing!
@missjb Thank you & you are so right. Those going through it & their families (me) have to help & do the research & the trouble shooting. I'm convinced now that had she seen a doctor, be it a GP, neurologist, her oncologist, counselors who actually knew about it instead of passing her around, denying an iron panel testing ferritin level, denying her claim of DAWS from the horrible drug she was over prescribed would she had been in crisis for so long. It took her to the point of wanting to die! And even still, they did not know about the new guidelines. Our doctors, well many of them are behind on what they need to know. They're so free to dole out drugs like Ropinerole, but tell you nothing about the severe augmentation and/or what happens combined with alcohol, which together makes it 100x worse. She's on the right path now, but it was months of living hell, so anyone going through it, do your research & be assertive with your doctors & insist on what you want, i.e iron panel & infusions because I'm sure you're way low on ferritin in brain. That was a main thing that angered me so much, they just wouldn't do it especially when ferritin was at 26! Be your own advocate because doctors won't help any more than what they need to do
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3 ReactionsWell said, friend minnie528!