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??