Drug Holiday: What It Feels Like When You Stop Taking RLS Medication
Dopamine medications can help control the nighttime symptoms of restless legs syndrome (RLS), but after an extended time, augmentation can occur. Augmentation is a process in which the body becomes tolerant to the drug, rendering it ineffective. When this happens, patients may need to take a break, or holiday, from medication for a few days or weeks. What follows is an excerpt from the journal of Marleen Schipper, 62, who has had RLS for more than 40 years. She wrote this journal in the course of one sleepless night during a drug holiday.
Marleen relies on sudoku puzzles and mystery movies to get her through long nights without her RLS meds.(MARLEEN SCHIPPER)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. Ive even met fellow RLS sufferers who dont 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 wont do the job anymore—and I know by now that taking three or more wont either. Twice a year I take a drug holiday, meaning I dont 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 Ill 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 Ill 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 Ill get through the night after all!
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 dont use these home remedies now that Im on medication, Ill 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 dont disturb my spouses sleep with moaning, groaning, and kicking. But, as usual, Ive forgotten that its hard to read or write when youre walking and kicking and pacing.
[ pagebreak ]11:30 p.m.
Now my feet start hurting: The pain is like a toothache. I cant stand the touch of sheets or carpet. An over-the-counter painkiller and very soft, big socks help a bit.
I turn the video on, volume almost at zero, and the movie seems surreal. Now I start to pity myself, thinking about the pain, the urge to move, and this strange state Im in—awake and yet drowsy from the sleeping pill. The feeling enters my neck, and I have to turn my head sharply, looking back over my right shoulder every few seconds.
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Maybe checking email will distract me. I boot up the computer and, yes, theres a message from an American cyber pal, a fellow music fan. I sit, one buttock on my stool, leaning on my desk, kicking, shaking, and jerking my head, and surf to an auction site. I make a ridiculous bid on a TV set and return to my bed. I try to do a sudoku puzzle. Too easy: Even drugged up, I can solve this one. It gives me some distraction, but only in my head, not in my limbs.
I try to watch another mystery, this time CSI: Miami. I overanalyze the plot and pick apart the holes: The dead body, lying in the room for over three weeks, was apparently not bothered by any decomposition. Ever try to keep a pork chop out of the fridge for three weeks? In the lab, where colorful fluids are bubbling on Bunsen burners, a pathologist cracks the case and heads out to make an arrest. I was under the impression that a pathologist does the research, and a cop does the arrest!
Eventually the mystery is solved by a policewoman showing a lot of skin, with not even one hair out of place after chasing the suspect. Im rocking and rolling and jerking around on my bed—but at least I now know whodunit.
Another round of walking through the spare room, on my toes, then on my heels. A visit to the bathroom, another footbath, a sip of water, and a game of Spider on my computer. Sitting on my other buttock, I rock from left to right, backward and forward.More games—Patience, Spider, mah-jongg, FreeCell. Pinball is my favorite, but no fun without the sound.
Now my muscles start aching, due to all the unnatural movements Im making. The world outside is quiet, and I lie down in bed again. My remote control leads me through the channels, showing repeats of the news, commercials that promise to strengthen and shape my thighs, and late-night ads with scantily clad girls asking me to call and talk to them. No thanks.
I try popping in another video, but Ive seen this one three times before and it only holds my attention for 15 minutes. My muscles need to relax, I tell myself over and over again. I make a hot bath and it helps; my limbs get quiet and I get sleepy again. When the water cools off, I head back to bed.
[ pagebreak ]2:00 a.m.
Maybe now I can get some sleep. My mind wanders, no logic involved. Distorted ideas, in and out of dreams, and—yes!—I fall asleep.
With a firm kick, I wake myself. I glance at the clock: still 2. How is that possible? Eventually I doze off, wake up with a start, doze off, again and again. In the daytime, my thinking is clearly structured: It has a beginning, a continuation, and an end. Here, it feels like its stuck in a groove, just drifting on forever. I look at the clock again: 2:04!
My alarm clock will go off at 7, so I still have some time to kill. A new sudoku game, kamikaze level. (Yes, at this point, kamikaze seems like a good idea.) When all the digits are in place, the jerking and shaking increase again. I cannot stay in bed, so I watch the rest of the film standing up, rocking and pacing. After 10 minutes, to bed again. Im convinced Ive moved more in the last two hours than the villain whos been chased throughout the movie.
Well, now were getting somewhere: Its 3:30, the day is dawning, and I hear the birds wake each other with their songs. My eyelids are at half-mast, but my limbs are fully alive and kicking. I start a new puzzle; tomorrow Ill have to buy a new sudoku book.
I stop and think how happy I am that there is a medication that helps this condition—with hardly any side effects (at least for me). Interrupting my treatment every six months is a small price to pay. RLS has bothered me since puberty and its severity has increased with age. In both of my pregnancies, I suffered night after night. Even napping was impossible, because any time of day, as soon as I lay down, the symptoms started.
Ive been on medication for more than 10 years. Normally I have symptoms for about an hour after I take my pills, and then I calm down and can usually sleep six hours. During the day, I need something to keep my mind busy whenever I sit down; being preoccupied with something challenging seems to help my symptoms. Recently, Ive been arranging and composing music for wind orchestras on my computer. A publisher heard some of it and decided to buy a few pieces—so in a way, my RLS pays off!
Hooray, its almost 5. I am completely at the end of my rope, with muscle aches in my legs, my torso, and my neck. A few more games at the computer, some surfing, kicking, and rocking. The newspaper arrives, and I glance at some interesting articles and reviews.
My legs finally calm down—most peoples symptoms arent as bad during the day—and I fall asleep five minutes before the alarm clock goes off. One night down, and two—or more, if I can handle it—to go!