When the Meds Don't Work

I love my restless legs syndrome (RLS) medications. I really do. They have changed my life.

It was about 15 years ago when I was first put on medication. At that time, my restless legs were pretty out of control, and as a result, I was barely sleeping.

I couldn’t sleep when my legs were restless. My legs were restless all the time. Being tired made the restless legs worse. I was tired all the time. Big vicious cycle!

Looking beyond lifestyle changes and sleep hygiene

After working through all the lifestyle changes and sleep hygiene habits, I visited my doctor and discovered there were pharmaceutical options to support me.

I started on pramipexole – an anti-Parkinsons drug that was being used to treat RLS. Pramipexole increases dopamine, a chemical messenger that controls the movements.

Like magic pixie dust

I felt like a fairy had sprinkled magic pixie dust all over me. I slept for the first time in a very long time. I have complex insomnia issues so sleeping through the night was not something that was going to happen by treating RLS. Many years would pass before I was given more diagnoses and further treatments. But pramipexole gave me several hours of sleep at a time and a body that could rest for hours and hours on end.

Those of you who experience chronic insomnia will understand just what a miracle sleep is. And how much it changes your life.

And then augmentation set in

So, imagine my despair when it stopped working. I’d been through years and years of RLS and insomnia and I felt I was used to it. Then the pixie dust came along and I got to sleep and feel peaceful.

I could sit in my lounge chair and watch television without creating a tsunami of movement. I could go to the cinema. I could sit in a car. So many things that people take for granted – I could do them too.

And then I couldn’t.

RLS was back with a vengence

Augmentation is a known side effect of some RLS medications. It doesn’t happen to everybody. But it did happen to me.

Not only did my RLS come back, it was worse than before. My arms were restless. My symptoms started earlier in the day. That twitchy crawling from my back down to my shins was intense. It became painful.

I trotted back to my doctor to discuss this development. I am so incredibly grateful to have been blessed with compassionate, understanding doctors who have not dismissed my symptoms and the distress that accompanies RLS.

Changing my RLS medications

I was taken off pramipexole and put onto pregabalin – an anti-convulsant that can target nerve pain. I was put on a very low dose and once again, the pixie dust was sprinkled.

Not as liberally this time – I still had some mild symptoms but I was pain-free and it was enough to allow me to get a little bit of sleep. When you live with chronic insomnia, every minute is precious. I was grabbing quite a few precious minutes.

Finding the right combination

As the months went by, the therapeutic effect of pregabalin lessened, so I returned to my lovely doctor to discuss options. I was put back onto a very low dose of pramipexole in addition to an increased dose of pregabalin.

And it worked. It’s been more than a decade, and together the 2 medications work to control my RLS. In combination with treatments for all my insomnia issues, I now sleep regularly. Most of the time.

Sometimes the medications don't work

Despite all the best practices, there are nights when the meds don’t work. I had one of those recently. I was awake all night. I was determined to stay in bed in case a moment of sleep came. I moved to the spare bedroom so as not to disturb my husband. My RLS was bad – I shook my legs and hips and feet and scared the living daylights out of my cat.

It went on for hours – I must have looked like I was on a vibrating machine at the gym. Wiggle wiggle wiggle. In the wee hours of the morning, I dozed off for half an hour. It really was a rotten night.

Getting through the exhausted days

The next day I was exhausted – I no longer have the ability to function well without sleep. I flopped around slowly, doing the bare minimum to get through the day. I fell asleep for a nap in the afternoon. I took my nighttime meds on time with an extra tablet – just to be sure. And I had a great night sleep.

Sometimes my meds don’t work and it’s really distressing. Most of the time, they do work and it’s a real blessing. I take nothing for granted - I have no idea what tomorrow holds. But just for today, I am grateful my meds work – most of the time.