Drug Holiday: What It Feels Like When You Stop Taking RLS Medication

Some time ago I read an article that asked, "What has happened to our willpower, as even people with restless legs take medications?" The author clearly had no true knowledge of this condition. I’ve even met fellow RLS sufferers who don’t take drugs and share that belief; symptoms affect us with different severities. But those people would understand if they could only spend one night in my shoes. During one of my drug holidays, I kept a diary to remind myself—and to tell others—what restless legs syndrome can really feel like.

A night in the life of a restless-legged woman
It is time to skip my medicine for a few nights, because my two dopamine-agonist tablets won’t do the job anymore—and I know by now that taking three or more won’t either. Twice a year I take a drug holiday, meaning I don’t take my meds for three to seven nights. This helps counteract the effects of augmentation, a process by which medication stops working and symptoms come back even stronger than before treatment. After that, I can start again with one or two tablets a night, and they seem to regain their power.

This drug holiday needs some preparation: I have to cancel all my appointments for a week, because I’ll get barely any sleep and will probably be close to insanity. This week is a good week: I have no orchestra rehearsals or saxophone lessons, which I teach to children here in the Netherlands, where I live.

How should I start? Should I just quit or taper off? I usually quit cold turkey, so this time I’ll try one pill tonight after dinner instead of my usual two. On top of that, I add a sleeping pill (after getting the OK from my doctor). Who knows, maybe I’ll get through the night after all!

10:00 p.m.
The feeling has started, creeping and crawling through my legs. I have to stretch. I walk up and down the room, sit for a little while watching TV, and then have to walk again. I cool my bare feet on the tiles in the bathroom and prepare a cold footbath. This helped me 40-plus years ago when I was first becoming familiar with RLS; although I don’t use these home remedies now that I’m on medication, I’ll try it anyway.

The RLS also attacks other parts of my body—my back, for instance. I overstretch my back, almost doing a backbend on the couch. That brings about five seconds of relief, then there we go again. This goes on and on. It is clear: Less medicine has the same effect as no medicine.

When I prepare for a drug holiday, I usually think that a good book, some crime mysteries on videotape, and crosswords and difficult sudoku puzzles will pull me through. I gather these supplies and make a bed in the spare room, so that I don’t disturb my spouse’s sleep with moaning, groaning, and kicking. But, as usual, I’ve forgotten that it’s hard to read or write when you’re walking and kicking and pacing.