RLS: When the Drugs Wear Off

I went to bed at 10:30 PM last night. A very civilised time to trot off to bed, I think.

At 11:30 PM, I got up again. My legs were flaring up with the tell-tale ache in my lower back and the marching cascade of sensations running down my leg, a desperate need to kick out for that momentary release. I kicked my husband so much he finally told me I might like to go to the spare bedroom for the night.

Medication assists my sleep

In addition to restless legs syndrome (RLS), I have multiple insomnia and mental health issues, so I have a little cocktail of 5 medications that are all targeted at assisting with sleep – amongst other things. Without those medications, I do not sleep at all and my mental health pays a heavy price.

As a consequence of pharmacological assistance, I am fortunate to fall asleep every night, regardless of how much my legs may be playing up. But the cocktail doesn’t guarantee to keep me asleep. Sometimes I get just an hour or 2. Sometimes 5 or 6. I never can tell.

Awake and restless

It has been a while since my RLS medications have not worked properly and I have not missed the trek from bedroom to lounge room as I try to leave my husband sleeping peacefully.

My legs were pretty bad last night. I rolled around on the lounge room floor, stretching my glutes and back and hamstrings and quadriceps. I lolled around on my foam roller, putting heavy pressure onto the restless areas. I distracted myself with the television. And I soothed my sad soul with a midnight bowl of cereal.

I also cursed my foolish self for having had a coffee at lunchtime.

Is it time to reassess my medications?

When I started on my medications several years ago, I found myself once again able to have a daytime coffee without repercussions. I have enjoyed that coffee very much. But in recent weeks, I have become increasingly restless and I am starting to wonder if it’s time to visit the doctor and reassess my medications.

It is definitely time to pay attention to my diet and steer clear of alcohol and caffeine while I’m having a flare-up.

I take the lowest available doses of pramipexole and pregabalin. They have worked magnificently for a decade and I am very happy with them. But every now and then, I need to tweak the dose. Last time I tweaked, I brought everything down a dose. After the last week or so, I think it’s time to see if I can go up a dose.

Nighttime is the hardest

I am reminded of how distressing the endless sensations and the constant need to move are when it’s time to sleep. I don’t notice so much during the day – I am just a fidgeter and to be absolutely honest, I have fewer sensations during the day. But at night-time, they kick in and when it’s time for bed, there’s little else to focus on.

My long-suffering husband is very patient with my strange sleep habits, but there are nights – like last night – where he can only cope with so many kicks and then it is time for me to hop out of bed and search for solutions.

Weighing the pros and cons

RLS is something I’ve had for as long as I can remember. It gradually became more severe as the years passed by. I managed with lifestyle modifications for as long as I could before going onto medications. Drugs work well for me, but there are consequences.

Managing RLS is always about weighing up the pros and cons. As my legs start to flare up again, I am filled with gratitude for the fact that medication works for me. And I can’t wait to get back to the doctor, tweak the dose, and rest peacefully once again.