I used to be a tenured professor, a broadcast novelist, and a married father of two sons after I misplaced all the things — due to a drug I used to be prescribed for a situation most individuals assume is a joke.
Stressed legs syndrome, or RLS, is usually misunderstood or dismissed solely. However for these of us with the extreme type, it’s brutal: It looks like bugs crawling up your bones from the within. The one aid is motion. So that you stroll. All evening. Till you collapse.
Whereas the phrase “stressed legs syndrome” precisely describes the situation, it’s not a useful identify for the dysfunction. Many of the a whole lot I’ve met with RLS cite the identify itself as the largest impediment to getting the care and assist they want. The silliness betrays the seriousness. Certainly, the Stressed Leg Syndrome Basis tried a rebrand within the early 2000s — from RLS to Willis-Ekbom illness — however the brand new identify by no means actually caught on.
My RLS signs began in 2001. I used to be a graduate pupil with a toddler at dwelling and one other baby on the best way. I barely slept for 2 weeks. A physician recognized me with RLS and prescribed a dopamine agonist referred to as pramipexole (additionally used to deal with Parkinson’s illness). It labored. I slept. And for the primary time in days, I felt like myself once more.
I’d keep on that treatment for practically 20 years.
What I didn’t know on the time — and what no physician informed me — is that pramipexole carries a big danger of impulse management issues, together with compulsive playing or procuring, hypersexuality, and binge consuming.
Generally used drug could cause uncontrollable urge to gamble and have intercourse, FDA says
My impulse management dysfunction began slowly a number of years into taking pramipexole. My RLS signs had returned, worse than earlier than, and the physician elevated my dose (a phenomenon often called augmentation). The brand new dose labored however launched a brand new downside. Sooner or later within the grocery retailer I purchased $100 of lottery scratchers. At first, I used to be capable of handle the urges, however they strengthened over time. One summer season I dropped a number of thousand {dollars} of a guide advance on slot machines. That will or could not sound like a lot, however think about that I had by no means critically gambled earlier than 2007. I crossed a line in 2016, when on a weekend journey, my fiancée taught me to play blackjack. I turned $100 into $200, and — for as soon as — walked away. It might be the final time that occurred. Quickly I used to be dropping total paychecks. I ended up broke, suicidal, and twice hospitalized.
My youthful brother, Jared, additionally developed a playing downside after being recognized with RLS in 2007 and was prescribed a dopamine agonist. In contrast to me, nevertheless, his impulse management dysfunction emerged nearly instantly.
Seems, each situations are frequent. The place it took me years to go down with blackjack, video poker had my brother by the throat from the get-go. Researchers Howard Weiss and Gregory Pontone put it this fashion in JAMA Inner Medication: Whereas “the probability of growing an impulse management dysfunction will increase with increased doses of dopamine agonist medicine … critical impulse management issues have developed in sufferers receiving comparatively low doses” as properly.
Jared was the primary to recommend that our playing is perhaps attributable to the treatment. I dismissed it. The concept a prescribed, FDA-approved treatment might trigger a playing dependancy by no means crossed my thoughts — and when it lastly did, nobody believed me. Not my physician. Not my psychiatrist. Not even my pharmacist. One laughed out loud.
Finally, my therapist inspired me to discover a specialist. After weeks of analysis, I found by way of a Stressed Leg Syndrome Basis-sponsored assist group that one of many world’s main RLS docs, Mark Buchfuhrer, practiced simply half-hour from my dwelling.
In February 2021, I drove to his workplace with my fiancée. I used to be determined. I informed her I couldn’t marry her whereas the playing was a problem. Suicide was by no means removed from my thoughts.
Buchfuhrer listened to my story, nodded, and stated, “When you cease taking the pramipexole, the playing will go away in a number of days.”
I didn’t consider him. He smiled. “You’ll be capable to stand in a on line casino and really feel nothing,” he stated.
When he left the room, I sobbed.
The subsequent day, I ended the treatment. Inside every week, the compulsions disappeared. It felt like an evil spirit had been exorcised. Two months later, I’d misplaced 30 kilos, was consuming and sleeping usually, and for the primary time in years, I felt clear headed.
After which got here the grief.
As a result of I’d been on the drug for practically 20 years, I needed to rethink my total life by way of that lens: my divorce, my chapter, the tip of my tutorial profession, estrangement from my youngsters, and a suicide try. I wrestled with existential questions of free will and company. How a lot of my life had really been my duty?
I’m not alone. In an article revealed within the Mayo Clinic Proceedings, authors (together with Buchfuhrer) estimate the speed of impulse management dysfunction amongst sufferers who take a dopamine agonist for RLS or Parkinson’s “to be between 6% and 17%.” However whereas Parkinson’s sufferers seem like comparatively well-informed in regards to the danger, the overwhelming majority of RLS sufferers are by no means warned. Even docs appear to be unaware.
Weiss and Pontone level out that “a affected person is unlikely to spontaneously point out, ‘By the best way, physician, I misplaced $250,000 in casinos final yr, and I buy $500 of lottery tickets each week’ or ‘I spend all evening on Web pornography websites and am soliciting prostitutes.’ Consequently, the uncontrollable behavioral impulses triggered by dopamine receptor agonist medicine remained unrecognized or usually didn’t develop into obvious till the affected person developed critical monetary, authorized, or marital issues.”
In a single on-line assist group, a girl wrote: “I’m positive I gained’t recuperate. I’m in retirement now, on [Social Security] and a small 401(ok). I pulled all the things out of my different retirement accounts. Am on the point of transfer to Mexico the place I can reside on a lot much less.”
She adopted her physician’s orders. She misplaced all the things. And like me, she has no authorized recourse.
Because of a 2011 Supreme Courtroom determination, generic drug producers can’t be held responsible for unwanted effects, even after they mirror these of the brand-name medicine they copy. In 2001, Mirapex was the one recreation on the town, however when the generics got here out in 2010, most of us converted. What meaning in sensible phrases is that we’re left with no safety if the drug harms us.
I’m nonetheless indignant. I’m indignant that none of my docs linked the dots. That after I requested, they dismissed me. {That a} drug meant to assist me ended up practically killing me. I’m rebuilding now — married, therapeutic, working, shut with my sons — and my RLS is properly managed with fastidiously monitored, low-dose opioid remedy.
I now not gamble. My brother received off the drug, too, and just lately texted me, “I’m feeling higher day-after-day.”
However like me, he’s received an extended highway forward.
J. Aaron Sanders is a novelist and filmmaker residing in Los Angeles.
