By Sharon Goldman

When my primary care doctor prescribed Klonopin to treat my severe anxiety in the months before and after major surgery in December 2021, I had no idea that getting off the drug later — as well as the Ambien I had taken for over a decade — would become a nightmare.

After struggling to quit on my own, and unsure of where to turn, an online search led me to several frightening, confusing weeks in detox and rehab facilities. Despite the intervention, I still suffered what seemed like endless sleepless nights, heart palpitations, severe agitation and tremors. As it turns out, I was one of the lucky ones — my withdrawal could have been not just miserable but also long-lasting or even life-threatening.

An estimated 30 million adults in the United States take benzodiazepines such as Klonopin, Ativan, Xanax and Valium for anxiety, stress and related mental health conditions. Millions more take sedative-hypnotics including Ambien for sleep, which, like “benzos,” work on a specific brain neurotransmitter called gamma-aminobutyric acid, or GABA.

Yet there is little awareness about the consequences of withdrawing from long-term use or high doses of these medications and how to do it safely. Even primary care physicians — who write half of all benzodiazepine prescriptions — are often unaware that a slow, supervised taper off the drugs is necessary.

“The vast majority of doctors don’t think that these medicines are addictive or habit forming,” says Anna Lembke, a psychiatry professor at Stanford University School of Medicine and chief of the Stanford Addiction Medicine Dual Diagnosis Clinic. The medical community often “overestimates the benefits and underestimates the risks of long-term benzodiazepine use.”

The higher the dose, the greater chance of harm

A safe taper typically takes much longer than a week-long detox or 28-day stay in rehab — an average of six to 12 months, experts say.

Last year, the Food and Drug Administration announced that it would commit up to $2 million to fund efforts to generate new guidelines for safe withdrawal from benzodiazepines. Experts say the move is desperately needed.

Benzodiazepines, and “Z-drugs” like Ambien (generic name: zolpidem), are not meant for long-term use. “There is no reliable evidence for efficacy beyond a few weeks, and we know that the longer people are on benzodiazepines, and the higher the dose, the more likely they are to suffer harms related to them,” Lembke says.

In 2020, the FDA added its “most prominent safety warning” — a boxed warning — to benzodiazepine packaging clarifying that “physical dependence can occur when benzodiazepines are taken steadily for several days to weeks.” And Ambien’s FDA warnings have been updated over the years to make clear it is indicated for “short-term treatment of insomnia” — meaning not longer than a few weeks.

But many physicians fail to follow the guidelines. One reason is that doctors typically don’t learn much, if anything, about the drugs in medical school, Lembke says.

Even those doctors who understand the dangers don’t realize the withdrawal challenges, says Sarah Nadav, who recently founded a company called Coheal that offers online services to help people withdraw safely from benzodiazepines. “Many people come to us who are being abruptly cut off by their doctor,” she says.

Research estimates that some 10 to 15 percent of patients taking the drugs long-term will experience protracted withdrawal syndrome if withdrawal is done too quickly, and “cold turkey” withdrawal can cause seizures, including potentially fatal ones.

Often, patients lack the health literacy to understand what they may face, especially if they stay on the drugs for more than a few weeks, says Alexis Ritvo, an assistant psychiatry professor at University of Colorado Medicine and medical director of the nonprofit Alliance for Benzodiazepine Best Practices.

“They just know that in the short term, they work really well,” she says. “Then they realize if they don’t take them, they can’t sleep or they feel anxious or irritable,” but they may not understand that these are signs of physical dependence on the drugs. Even dosages can be misleading, she says — for instance, the half-milligram of Klonopin I took fairly regularly over a period of four months may not sound like much, but it is equivalent to 10 milligrams of Valium.

All withdrawals don’t look alike

Nadav says she has been through protracted withdrawal syndrome: Six weeks after starting to taper off Xanax and Ambien in 2021, “my hands and my head were shaking, I was hallucinating,” she says. While the delirium (a well-documented symptom) resolved within three months, the symptom can be dangerous — and Nadav says her doctor should have sent her to the emergency room.

For Nicole Lamberson, a former physician’s assistant who went to detox 13 years ago to get off Xanax, Klonopin and Ambien, the struggle is ongoing. After years of being bedridden, she is still unable to work full time.

“It’s a very slow healing of the nervous system, which has been like clawing my way out of hell,” she says.

A recent article gave voice to patients like these, showing that discontinuing benzodiazepine use can be “associated with nervous system injury and negative life effects that continue after discontinuation.”

Co-author Christy Huff, a cardiologist and director of the Benzodiazepine Information Coalition, says she is also a patient. “Even though I took my medication as prescribed, I still experience symptoms on a daily basis after four years off of benzodiazepines,” she says.

The ideal withdrawal scenario is one the patient can tolerate, Lembke says, and that differs from person to person. Even if you don’t see yourself as “addicted,” she suggests seeking an addiction doctor who knows how to properly manage withdrawal — “until we better educate the average doctor.”

For prescribers, the Benzodiazepine Information Coalition and the Alliance for Benzodiazepine Best Practices have many resources, Ritvo adds.

“We need to figure out how to support the prescribers to help them navigate this, so that it’s not just ‘I won’t prescribe these’ or ‘I take people off really quickly,’” she says.

I wish I had understood the options before going down my own path of withdrawing from Klonopin and Ambien. While I feel lucky to have healed with no lasting ill effects, in hindsight I wish I had slowly tapered off the drugs. Instead, I had a hard landing.