I was a tenured professor, a published novelist, and a married father of two sons when I lost everything — because of a drug I was prescribed for a condition most people think is a joke.
Restless legs syndrome, or RLS, is often misunderstood or dismissed entirely. But for those of us with the severe form, it’s brutal: It feels like insects crawling up your bones from the inside. The only relief is movement. So you walk. All night. Until you collapse.
While the phrase “restless legs syndrome” accurately describes the condition, it is not a helpful name for the disorder. Most of the hundreds I’ve met with RLS cite the name itself as the biggest obstacle to getting the care and support they need. The silliness betrays the seriousness. Indeed, the Restless Leg Syndrome Foundation attempted a rebrand in the early 2000s — from RLS to Willis-Ekbom disease — but the new name never really caught on.
My RLS symptoms started in 2001. I was a graduate student with a toddler at home and another child on the way. I barely slept for two weeks. A doctor diagnosed me with RLS and prescribed a dopamine agonist called pramipexole (also used to treat Parkinson’s disease). It worked. I slept. And for the first time in days, I felt like myself again.
I would stay on that medication for nearly 20 years.
What I didn’t know at the time — and what no doctor told me — is that pramipexole carries a significant risk of impulse control disorders, including compulsive gambling or shopping, hypersexuality, and binge eating.
Commonly used drug can cause uncontrollable urge to gamble and have sex, FDA says
My impulse control disorder started slowly a few years into taking pramipexole. My RLS symptoms had returned, worse than before, and the doctor increased my dose (a phenomenon known as augmentation). The new dose worked but introduced a new problem. One day in the grocery store I bought $100 of lottery scratchers. At first, I was able to manage the urges, but they strengthened over time. One summer I dropped several thousand dollars of a book advance on slot machines. That may or may not sound like much, but consider that I had never seriously gambled before 2007. I crossed a line in 2016, when on a weekend trip, my fiancée taught me to play blackjack. I turned $100 into $200, and — for once — walked away. It would be the last time that happened. Soon I was losing entire paychecks. I ended up broke, suicidal, and twice hospitalized.
My younger brother, Jared, also developed a gambling problem after being diagnosed with RLS in 2007 and was prescribed a dopamine agonist. Unlike me, however, his impulse control disorder emerged almost immediately.
Turns out, both scenarios are common. Where 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 way in JAMA Internal Medicine: While “the likelihood of developing an impulse control disorder increases with higher doses of dopamine agonist drugs … serious impulse control disorders have developed in patients receiving relatively low doses” as well.
Jared was the first to suggest that our gambling might be caused by the medication. I dismissed it. The idea that a prescribed, FDA-approved medication could cause a gambling addiction never crossed my mind — and when it finally did, no one believed me. Not my doctor. Not my psychiatrist. Not even my pharmacist. One laughed out loud.
Eventually, my therapist encouraged me to find a specialist. After weeks of research, I discovered through a Restless Leg Syndrome Foundation-sponsored support group that one of the world’s leading RLS doctors, Mark Buchfuhrer, practiced just 30 minutes from my home.
In February 2021, I drove to his office with my fiancée. I was desperate. I told her I couldn’t marry her while the gambling was an issue. Suicide was never far from my mind.
Buchfuhrer listened to my story, nodded, and said, “Once you stop taking the pramipexole, the gambling will go away in a few days.”
I didn’t believe him. He smiled. “You’ll be able to stand in a casino and feel nothing,” he said.
When he left the room, I sobbed.
The next day, I stopped the medication. Within a week, the compulsions disappeared. It felt like an evil spirit had been exorcised. Two months later, I’d lost 30 pounds, was eating and sleeping normally, and for the first time in years, I felt clear headed.
And then came the grief.
Because I’d been on the drug for nearly 20 years, I had to rethink my entire life through that lens: my divorce, my bankruptcy, the end of my academic career, estrangement from my children, and a suicide attempt. I wrestled with existential questions of free will and agency. How much of my life had truly been my responsibility?
I’m not alone. In an article published in the Mayo Clinic Proceedings, authors (including Buchfuhrer) estimate the rate of impulse control disorder among patients who take a dopamine agonist for RLS or Parkinson’s “to be between 6% and 17%.” But while Parkinson’s patients appear to be relatively well-informed about the risk, the vast majority of RLS patients are never warned. Even doctors seem to be unaware.
Weiss and Pontone point out that “a patient is unlikely to spontaneously mention, ‘By the way, doctor, I lost $250,000 in casinos last year, and I purchase $500 of lottery tickets every week’ or ‘I spend all night on Internet pornography sites and am soliciting prostitutes.’ Consequently, the uncontrollable behavioral impulses triggered by dopamine receptor agonist drugs remained unrecognized or often did not become apparent until the patient developed serious financial, legal, or marital problems.”
In one online support group, a woman wrote: “I’m sure I won’t recover. I’m in retirement now, on [Social Security] and a small 401(k). I pulled everything out of my other retirement accounts. Am getting ready to move to Mexico where I can live on much less.”
She followed her doctor’s orders. She lost everything. And like me, she has no legal recourse.
Thanks to a 2011 Supreme Court decision, generic drug manufacturers cannot be held liable for side effects, even when they mirror those of the brand-name drugs they copy. In 2001, Mirapex was the only game in town, but when the generics came out in 2010, most of us switched over. What that means in practical terms is that we’re left with no protection if the drug harms us.
I’m still angry. I’m angry that none of my doctors connected the dots. That when I asked, they dismissed me. That a drug meant to help me ended up nearly killing me. I’m rebuilding now — married, healing, working, close with my sons — and my RLS is well managed with carefully monitored, low-dose opioid therapy.
I no longer gamble. My brother got off the drug, too, and recently texted me, “I’m feeling better every day.”
But like me, he’s got a long road ahead.
J. Aaron Sanders is a novelist and filmmaker living in Los Angeles.