The Other Epidemic: Trying to get off benzodiazepines

Depersonalization, Brain Zaps, The Ashton Manual, GABA Receptors, BenzoBuddies, Purdue Pharma, Hoffmann–La Roche, Psychic Tension, The DSM, Hypnotherapy, Ketamine, The Maudsley Deprescribing Guidelines, A Small Matisse at the Met, Pruning Pills, Sensory Waterboarding, A Wedding, Another Drug, A New Self

In April of 2021, I walked into Toronto’s Centre for Addiction and Mental Health (CAMH). I had been feeling increasingly unstable, and despite not having a plan, my fantasies of suicide were getting harder to ignore. After unburdening myself to a triage nurse, I was ushered into a windowless room, relieved of my belt, and given paper slippers. The doctor who visited me said he thought I should stop taking Klonopin.

Examining my chart, he shook his head at my long-term, daily use. He said I shouldn’t have been taking Klonopin for so long, almost like I’d been writing my own prescriptions for the past nineteen years. Going off it, he told me, would reduce the mood swings that were making my life so difficult. I might briefly experience symptoms of withdrawal—increased blood pressure and heart rate, sweating, perhaps even tremors and seizures—and if I did, I should call 911. But it would be for the best, so I agreed. Six days later I was released with taper instructions intended to have me free of the drug in three weeks.

It took just two days on a smaller dose of Klonopin to feel profoundly uncomfortable. My hands were tingling, and I couldn’t stop sweating. I could still exercise, write, bathe, and cook meals. Within a week I could do none of those things. Here’s what happened to me as I tapered down to small doses of Klonopin, and then, for the first time since 2002, to none at all.

The tingling in my hands became numbness, which spread to my arms, legs, feet, and, briefly, my stomach. This is called paresthesia, which, combined with the sudden onset of stabbing pain and pressure in my neck, led to my first incorrect diagnosis, cervical radiculopathy, commonly called a pinched nerve. Tinnitus, a ringing in the ears—which I’d experienced before—­reappeared at shocking levels, like a million helium-fueled car alarms. I slept next to a speaker blaring white noise, although “slept” isn’t correct; I became an insomniac. Excessive sweating, hyperhidrosis, was the most embarrassing symptom. I packed spare shirts on the rare occasions when I left my apartment, and lost ten pounds. When I spoke aloud, my voice didn’t sound like mine, which is symptomatic of depersonalization. I became unspeakably sensitive to noise, light, and all things sensory. Then there was fasciculation: My left biceps began twitching, but this I welcomed, because now there was a symptom visible to my general practitioner—I wasn’t faking—although he still had no solution. I developed pain in both my hands, severe enough that I struggled to dress myself. This, along with a new, constant ache in my right knee, led to another misdiagnosis: arthritis. The first twenty minutes of each morning I spent vomiting, or retching, as I hardly ate. During the second week of withdrawal, I began to feel like a conduit for lightning, which I kept from my wife, Cristine, and from my general practitioner, because I worried I’d sound crazy. The sensation of being electrocuted for hours on end (and I don’t mean the “brain zaps” associated with SSRI withdrawal) was the most agonizing symptom. I’ve since learned that many people experience this during benzodiazepine withdrawal, and some end their lives because of it. My condition soon bridged mind and body and I became a tic person, compelled to bend my fingers in bizarre ways. The world smelled strange; I smelled strange. I didn’t know what was happening.

To say that these symptoms—and there were more; look up akathisia—exacerbated my “illness anxiety” would be a comic understatement. I knew that every hypochondriac is eventually vindicated, but that their “I told you so” has a fatal price. After decades spent scanning my body for abnormalities, I believed my time had come. Having kicked opiates cold turkey in the past, I felt nostalgic for three simple days of traditional nausea, sweatiness, and bone-deep ache. As the weeks progressed, doctors at CAMH enrolled me in therapy and made a number of other suggestions that didn’t feel like they addressed the gravity of what I was going through. My terror became constant. I was on fire but couldn’t be extinguished. I paced and cried and trembled and sweated. Although I suffered intensely from the physical effects of benzodiazepine withdrawal, I was broken by the emotions. I’d never been so anxious, and for the first time in my life, I was suicidal with a plan.

A couple of months after my stay at CAMH, I found a glimmer of hope. During a 12-step meeting, held on Zoom because of the pandemic, I shared that I’d been diagnosed with a pinched nerve and would potentially need surgery. I also mentioned that I’d recently been tapered off Klonopin. A person with their camera off sent me a message urging me not to have surgery. They suspected I had something called benzodiazepine withdrawal syndrome (BWS) and recommended I look up Dr. Heather Ashton.

After the meeting I did as suggested and discovered a number of websites run by medical professionals concerned about the effects of benzos, and an enormous online community of people like myself. They’d also been prescribed a benzodiazepine with assurances that it was safe, then dis­continued it, and were enduring what they often described as the worst experience of their lives. Their doctors were baffled, and sometimes accused them of lying. One doctor, however, was their patron saint: Heather Ashton, a British psychopharmacologist, who in 1999 published Benzodiazepines: How They Work and How to Withdraw, known colloquially as the Ashton Manual. It details every symptom I was experiencing, and outlines a frightening array of problems related to benzodiazepines.

Klonopin is one of numerous benzodiazepines regularly prescribed for anxiety and insomnia. Commonly called tranquilizers—brilliantly effective branding—the most well known of these central-nervous-system depressants are alprazolam, lorazepam, diazepam, and clonazepam (or Xanax, Ativan, Valium, and Klonopin, respectively). They are among the most widely prescribed medications in America. Today the safety of these medications is increasingly being questioned, but initially Dr. Ashton was just one of a handful of skeptics. Another, Professor Malcolm Lader from King’s College London, began sounding the alarm in the 1970s. In 1981, Lader warned of an “epidemic in the making,” and in 1999 he said, “It is more difficult to withdraw people from benzodiazepines than it is from heroin.” Nonetheless, according to the most recent study estimating total benzodiazepine use among Americans, which analyzed data from 2015 and 2016, an estimated 30.6 million American adults had taken benzodiazepines in the previous twelve months, with 25.3 million of them using them as prescribed.

In her manual—the most accessible of all benzodiazepine-awareness materials, and thus the one most suffering patients first discover—Ashton speculates that 10 to 15 percent of those taking benzos (potentially millions of Americans) will experience protracted withdrawal, as I did, and still do. Others, like Sean Hood, a researcher from the University of Western Australia’s School of Psychiatry and Clinical Neurosciences, believe it could be much more—up to 40 percent. Yet in medical school, students spend only a few hours studying benzodiazepines, perhaps a few more, depending on their residency. In 2020, after decades of mounting concerns, the FDA finally mandated a boxed warning for benzodiazepines indicating that “clinically significant physical dependence” was possible, as were “life-threatening” withdrawal reactions. Unfortunately, as Dr. Alexis Ritvo—an addiction psychiatrist in Colorado, and the medical director of the Alliance for Benzodiazepine Best Practices—explains, patients and their doctors aren’t necessarily aware of the warnings: “While the FDA publishes their boxed warnings, there is no formal way prescribers are required to be educated about them.”

Doctors at CAMH had assured me that benzodiazepines usually “clear the system” in two, perhaps three weeks—a commonly held belief—so any withdrawal symptoms would likely persist only that long.1 Ashton and others believe that withdrawal can last months, even years. Days after I read Ashton’s manual, a specialist in Toronto said my “symptoms suggested multiple sclerosis,” four words that would terrify any hypochondriac, anxious, or ordinary person. I now know this misdiagnosis isn’t uncommon, as BWS can mimic the symptoms of MS, along with other illnesses and injuries.

According to Ashton and several recent studies, benzodiazepines alter brain function through neuroadaptation that persists after dis­continuation. Initially, they work by enhancing the effect of a neurotransmitter called gamma-­aminobutyric acid (GABA), the body’s tranquilizer. With long-term use, the brain adapts by reducing—downregulating—both the number and sensitivity of GABA receptors. At the same time, the brain’s excitatory neurotransmitter, glutamate, becomes more active without GABA’s soothing influence. Once someone discontinues a benzo, their GABA-suppressed brain, full of unchecked glutamate, creates a chronically hyperstimulated nervous system. GABA receptors eventually do upregulate—taking their own sweet time—and the brain resumes soothing itself, but until that happens, for some people, as for me, the physiological sense of being in danger is persistent, and debilitating. To paraphrase a post from the peer-­support site BenzoBuddies: If my nervous system is a car, benzo withdrawal has tied a brick to the gas pedal and disabled the brakes.

Armed with new information, I found those first few weeks both frightening and empowering. Frightening, because members of benzodia­zepine support groups can sometimes catastrophize, partly because anxious people fear and focus on the worst, and partly because the truth is genuinely catastrophic. Empowering, because now there were answers, buried beneath layers of disturbing facts. While I was still suffering terribly, I was relieved to finally know why. I returned to CAMH’s Emergency Department, certain the doctors at this renowned facility would be familiar with Ashton’s ideas. I was wrong. They didn’t believe the symptoms I was experiencing could be caused by benzodiazepine withdrawal. My research—gleaned in part from the stories of countless others—fell on deaf ears. They suggested I practice mindfulness and take up exercise, and sent me home.

While working at Hoffmann–La Roche in New Jersey, in 1955, chemist Leo Sternbach synthesized a compound that was later called chlordiazepoxide. Finding it pharmacologically underwhelming, Sternbach shelved it. Two years later, his colleague Earl Reeder discovered the discarded compound while cleaning his lab, and decided to test it on mice. Chlordia­zepoxide was found to have significant sedative, anti-convulsant, and muscle-relaxing effects. After more testing on big cats from the San Diego and Boston zoos—then on schizophrenics and the elderly—in 1960, chlordiazepoxide entered the market as Librium. It was promoted as a safer alternative to barbiturates, which had largely supplanted bromides as a treatment for anxiety.

Sackler had been hired by Hoffmann–La Roche to market Valium, the successor to Librium, and his campaign made it the first medication to earn one hundred million dollars. Between 1969 and 1982, it was America’s bestselling drug. Sales peaked in 1978,when over two billion tablets were sold. With the creation of the term psychic tension, pharmaceutical companies had found a way to make the struggles and stresses of daily life medically problematic for everyone. Or, as Dr. Christopher ­Blazes—a psychiatrist at Oregon Health & Science Un