Augmentation

Discussions ?

Rick · 10h ago · 💬 1 (last 1m ago)

I finally found a neurologist who also has RLS and has tried all the things I've tried. She totally "gets" me and that's been amazing!


As I discussed my symptoms with her and the things I tried, and she went through her list of things to try, I realized I had in fact tried every possible option - even oxycodone. Yes, I had a standing backup prescription of oxy for 6 years. I was very careful with it... until I wasn't, and then I found myself using it for headaches, and to get to sleep. That was when i knew I needed to try something else.


I was taking 1 MG extended release Ropinerole combined with 1MG Pramipexole (Mirapex) 3 times a day at 2pm, 6 pm, and 10pm. I was getting RLS in my shoulders and arms and even hands... hence the site name of restless LIMBS because all my limbs were affected!


So my neurologist put me on Lyrica and recommended I ween off of either Pram or Ropinerole, and start taking Lyrica to see if it was a viable substitute. I don't recall her giving me any guidance or guidance on HOW to wean off of either one, but I honestly can't remember. I would definitely recommend bringing someone close to you along with you when you meet with your neurologist, so they can help you piece the conversation together afterwards.


Lyrica has been quite effective, although it leaves me with a bit of a buzz (which I am totally fine with). I have weaned off the Ropinerole but apparently I did it the wrong way. I didn't go cold turkey but I extended the time between doses over the course of only a few days. I've since learned that should have happened over the course of several weeks, not days!


But it's this lack of specific guidance that I'm very concerned about.

Rick · 1m ago

I should also add that I was told to wean off either the Pram or the Requip (Ropinerole) but wasn't given guidance on how to do that. Yes, I should have asked as well, so that's on me.


If you're reading this and have needed to wean off your RLS medication(s), did your doctor give you guidance on how to do it safely?

If you could go back to the version of you who was first handed a dopamine agonist, what would you want them to know? I'd like to gather the things we all wish we'd read early.
How did you find a doctor who actually understood augmentation? Did it take a referral, a specialist, several tries? Please share how you got to someone who knew what they were looking at.
How long did the worst of the rebound last for you after cutting down a dopamine agonist? I keep hearing "it gets better," and I think people in the middle of it would find some real timelines reassuring.
How long were you on a dopamine agonist before augmentation set in? For some people it seems to be months, for others years. I'm curious whether there's any pattern in when it starts.
If you've been on pramipexole, ropinirole, or the rotigotine patch for a while, did your restless legs ever start showing up earlier in the day, or spreading to your arms? I'd like to hear when you first noticed something was off, and how long it took before anyone used the word "augmentation."
For those who switched from a dopamine agonist to gabapentin, gabapentin enacarbil, or pregabalin: how did the change go? Please share what the transition felt like, not doses.
The 2024 sleep-medicine guidelines now advise against dopamine agonists as a first choice, mostly because of augmentation. For those who were on one of these drugs for years: does that match what happened to you, or did it keep working fine? I'm trying to get a sense of how common the bad experience actually is.

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When pramipexole, ropinirole, or rotigotine stopped working or made things worse. This is the group for augmentation: symptoms starting earlier in the day, spreading to new parts of the body, or getting worse over time on dopamine agonists.

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