Augmentation

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.

Here is my journey with augmentation: I tried Sinemet back in the early 90s, then Requip, then Mirapex, then back to Requip, then both of them together. No matter what I tried, I experienced augmentation and my symptoms got worse and they started earlier and earlier in the day. They even spread into my arms, shoulders and even my hands. This has been over the span of over 30 years, so by now it is complete misery when my symptoms hit me each day!

I travel a lot in my career, and sitting on a plane to Europe for 8 or 9 hours was incredibly uncomfortable. So I asked my doctor for something strong enough to cut through it. I knew weed cut through it, but it left me with red eyes and groggy the following day (I could barely function at work the next day). So he prescribed me oxy and wrote the prescription in a way that insurance would cover it.

I did a great job of only taking it when the plane trips became unbearable, or when RLS was keeping me from sleeping at night. I did that for 6 years, and could make a jar of the 5 mg pills last a few months, and then that became 10mg pills.

Then I started noticing that I was looking for reasons to justify taking one or two (I was up to 10mg pills at that point) for a headache, and then it was simply because it helped me get to sleep with or without RLS symptoms, and then it became something I wanted all the time. That was the week I stopped taking it cold turkey, and I've never looked back.

But now my neurologist is telling me that we will try Lyrica, and if that doesn't work, then the only remaining option is controlled opioids. I think we as a community need to figure out something better that works for more of us!