Augmentation

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!

The 2024 sleep-medicine guidelines now advise against dopamine agonists as a first choice, mostly because of augmentation:

What changed in the 2024 RLS treatment guidelines?

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.