Augmentation Roller Coaster Ride

I have experienced augmentation very quickly with the first medication my neurologist put me on. It was levodopa, and I have read that it can cause augmentation fairly quickly in some people with restless legs syndrome (RLS). That was definitely my experience, but the relief was awesome while it lasted.

My current medication regimen

I'm currently on Mirapex. It has been quite effective. It has taken a bit more time, but again, I feel like I'm experiencing augmentation. This time it's harder to determine since I have new sleep issues that make my RLS extremely erratic, just as my sleep cycle is — so daytime symptoms are a thing that's quite common for me.

What makes me think it's augmentation is these longer episodes of daytime RLS that are in larger areas of the body: my legs, arms, and sometimes torso. My symptoms are far more intense, too, and sometimes painful, meaning I absolutely have to take some of my medication at that point in the day, whatever random time of day it decides to show itself.

This means splitting my daily dosage up, leaving less of it for the nighttime. It doesn’t quite seem to be enough at night now, which suggests I need a higher dosage. I think I'm not on a large enough dose to suppress the strength and intensity of the symptoms anymore. I don't see my neurologist until the beginning of next year, so that's just awesome timing on my part. Thanks, body.

The trouble with dopaminergic drugs

I loathe this roller coaster ride of dopamine agonist medications. There is no winning with them. Eventually, it seems like things just get worse. Although, temporarily, they do work. And then... not so much.

On to the next and the next, until you run out and you're maybe worse off. I've never really had any experience with a medication that I got used to that fast to such a point of tolerance, and with the expectation that the next one will be similar. It's such that you know going in you'll be upping the dosage until it just stops working altogether. You might even eventually run out of those types of medications to try for RLS.

But, then, I have also never had a medication for any other condition that worked so well in general, either. Regardless of how long it works for, it is effective for that duration.

Other treatments that might work for me

I'm uncomfortable with the idea of some other types of medications. I am not comfortable with Lyrica as an alternative, because I have been on it for fibromyalgia before and didn’t really enjoy that experience. Some of the other options like opiates and benzodiazepines are difficult at best to get doctors on board with prescribing.

Yet, I don't like this current path of medication and augmentation. I think I would like to try iron supplementation, unless I go back into pain management, which means I will be back on pain medication — which was exactly how I managed my RLS for so long in the first place. It was a shocker, for sure, when I went off that medication and experienced RLS to the intensity it had become. That's how I got diagnosed with it, actually, because it was nutbars at that point.

Over time, will I run out of medications that work?

Clearly, my medication isn’t entirely managing my symptoms. I just don’t like the idea of bumping the dose up higher just so that another year down the road I will be used to that dosage, too. It freaks me out that, over time, I will just run out of this class of drugs altogether and have substantially fewer options available.

On the other hand, they definitely work when I'm on them, for however long that happens to be.

Have you had trouble finding a medication that works for you? Have you changed medications or dosages to better treat your RLS symptoms? Share an experience with us in the comments below.