Restless Legs Syndrome (RLS) Discussion Board

Hi everyone!
I have struggled with RLS for 30 years. It was mild and manageable without medication until 2019 when I went through a bout of anxiety and was prescribed a drug that (without my knowing it) made RLS MUCH worse. I was already not sleeping well due to the anxiety, but when I began taking the anxiety medication, I didn't sleep at ALL for 3 days due to RLS. So the doc prescribed Pramipexole, and my thus my hellish journey began. Things were better initially with both the anxiety and RLS. Eventually I no longer needed the anxiety meds after about a year. But the RLS grew worse (I now realize that was augmentation). So a neurologist switched me to Ropinerole. I've been taking that for 3 years now but started to experience augmentation with that and now had done the research and recognized the issue. So a few months ago I started weaning myself off of Ropinerole with the help of acupuncture. It HAD been going well until I got down to the last dose. I'm currently on just 1 mg extended release. But the RLS now is SO bad and I can't sleep. Any advice on how to get past the last hump and be free of this or at least back to the "manageable without medication" stage I was at before I began taking these dreadful meds? I DON'T want to take another addictive medication in order to get off of this one. Makes no sense to me. If I choose to gut it out, how long does the insomnia last? How do you manage it?

I'm assuming you were prescribed an antidepressant for your anxiety. These drugs are almost certain to cause worsening of RLS. However, if they are needed it is generally recommended to take the AD and work with the more severe RLS symptoms. You discovered to your cost how difficult this can be.

If you are currently weaned down to 1mg Ropinerole extended release, what dose were you eventually up to?

A few years ago I weaned off a much too high 5mg daily dose of Ropinerole and spent 10 months doing so. However I had the support of Pregabalin and Cocodamol. This made my journey so much easier than expected. I had tried to wean off 3 times before and failed, hence why I decided upon my very long weaning journey. I could not have done it without the other drugs for support.

Is Acupuncture your only support as you have been weaning. In my opinion this is insufficient to battle your current symptoms. I'm having difficulty recalling anyone who has found it to be of worthwhile benefit (but could be wrong and if so I stand corrected). Is your doctor supporting you as you wean of Ropinerole. What experience of RLS does he have?

Often people speak of addictive drugs. I prefer to look at it another way. If a certain drug (or type of drug) is the only way to control my pain, and RLS symptoms can indeed be considered to be pain, then that drug is being taken for the right reason. It is not being taken to get a 'high' and thus I prefer to think of myself as being dependent on my drugs - not addicted. Noone speaks of being addicted to insulin, for example.

Insomnia may be a part of the actual RLS, it's a different type of insomnia and does not respond to the usual sleeping aids. Gabapentin/Pregabalin will often help with this.
Once you are completely off the Ropinerole will come the task of dealing with what symptoms you are left with. Getting back to the "manageable without medication" stage before taking Pramipexole/Ropinerole may not be possible. Many years have passed and in the meantime your RLS may have progressed.

I tried to stop a couple times without assistance and failed. I hit day five with zero sleep and just couldn't continue. I do think a few people have done it - it simply is gutting it out, really. Warm or cold baths may help.

You certainly don't need to continue to take any of the medications used to help you stop it once you have gotten through the worst in case you try this again and you have difficulty.

With medication to help me, it took 3 weeks for the worst of it to go away. The average is about 10-14 days - some get through it as quickly as 4-5 days, some take over a month.

Vivance 7...There is no magical way of stopping the dopamine agonist drugs, if you surf through the many posts on here you will find that the process can be different for each individual case. The fact of the matter is simple...stopping the dopamine agonist drugs requires lots of determination, will-power and suffering, almost like getting over or suffering through a real bad hangover but worse...I recently went through the process of stopping dopamine agonist drugs without the aid of any other type of drugs to alleviate the debilitating Withdrawal symptoms and believe me its one of the hardest processes I've ever had to endure. There is no magical or secret way that anyone can prescribe to get you past stopping the final 1-MG of this deadly drug...wish there was but afraid it don't exist. Once the dopamine agonist augmentation starts you have no other choice but suffer through the difficult process and believe me it won't be easy but well worth the suffering in the end...probably about 10-12 days after stopping all DA's..