Wednesday, May 14

Tasha Hedges took Xanax for 20 years to treat her anxiety and panic attacks, exactly as a psychiatrist had prescribed it. Then in 2022, that doctor unexpectedly died.

A general practitioner continued her prescription but retired shortly afterward. The next doctor moved to Canada. Finally, Ms. Hedges found a new psychiatrist.

“The first thing he did was start yelling at me that I had been on Xanax too long,” said Ms. Hedges, 41, who lives in Falling Waters, W.Va. “He ripped me off my meds.”

Discontinuing the drug typically requires decreasing the dose slowly over months or even years, a process called tapering. Ms. Hedges stopped cold turkey. Debilitating withdrawal symptoms followed: hot flashes, cold sweats, restless legs, the shakes and teeth grinding.

“It was a nightmare,” she said. Two years after discontinuing the medication, she is still dealing with the fallout. “My brain has not been the same.”

In social media groups and websites such as BenzoBuddies, people like Ms. Hedges say they have become physically dependent on benzodiazepines. Many then get cut off from their medication or taper too quickly, and face dangerous and potentially life-threatening withdrawal symptoms that can linger long after the drugs are discontinued. Some doctors, fearful of the risks and stigma associated with these drugs, refuse to prescribe them at all.

“Benzos generate as much anxiety in the prescriber as they do in the patient,” said Dr. Ronald M. Winchel, an assistant clinical professor of psychiatry at Columbia University. “Do I start it? Is it the right context? Is it safe? Is my patient going to abuse it? What will my colleagues think?”

Prescriptions for benzodiazepines like Xanax, Ativan and Valium have been trending down since 2016, in part because of doctors’ concerns. Even so, these medications are considered quick and efficacious, and they remain among the most commonly prescribed drugs in the country to treat conditions including anxiety and sleep disorders. In 2019, an estimated 92 million benzodiazepine prescriptions were dispensed in the United States, according to the Food and Drug Administration.

Current guidelines recommend prescribing the lowest effective dose for the shortest possible duration, usually less than four weeks. But patients tend to stay on them longer than that. A F.D.A. review found that in 2018 about half of patients took them for two months or longer. Sometimes patients stay on them for years without regular check-ins to see if the drugs are still needed or well tolerated, said Dr. Edward K. Silberman, a professor emeritus of psychiatry at the Tufts University School of Medicine who has frequently written about benzodiazepines.

Because patients can develop a physical dependence within several weeks of steady benzodiazepine use, going off the drugs — even after a short period — requires a gradual process. However, many practitioners are not well trained in tapering the prescriptions. To make the process clearer, in March experts at the American Society of Addiction Medicine released new guidelines for dosage reduction that were developed with funding from the F.D.A.

“It’s absolutely insane to pressure people to get off and to withdraw people abruptly,” Dr. Silberman said.

Jody Jarreau, 60, started taking Klonopin for insomnia 25 years ago while he was living in Dallas. When his psychiatrist quit practicing for medical reasons, he eventually found another who suggested that he take two other benzodiazepines, Xanax and Valium, and work toward weaning off the Klonopin.

After about six months of taking all three drugs, Mr. Jarreau grew frustrated and decided to take matters into his own hands. He weaned himself off the Klonopin and Xanax.

He is still trying to get off the Valium, with the help of his general practitioner and a coach from the Benzodiazepine Information Coalition, a nonprofit group.

Initially, Mr. Jarreau said, he tapered too quickly off the drugs, and developed headaches, nausea and agoraphobia, which is an excessive and irrational fear of being in open or unfamiliar places. But one of the toughest withdrawal symptoms has been thoughts of suicide.

“There’s kind of like this background noise that says, You know, just take yourself out,” he said. “It’d be easier.”

He says that he had never experienced any of these symptoms before cutting back on the drugs.

In 2023, advocates for those injured by benzodiazepines gave a name to the varied long-lasting symptoms that may emerge during the use, the tapering or the discontinuation of the drugs: benzodiazepine-induced neurological dysfunction, or BIND.

Not everyone will experience BIND, they acknowledge. And with the right tapering plan, experts say, side effects can be minimized.

“These are very good and safe drugs when given to the right person in the right dose for the right period of time,” said Dr. Carl Salzman, a professor of psychiatry at Harvard Medical School and the former chairman of the American Psychiatric Association’s benzodiazepine task force.

But even though benzodiazepines have been around since the ’60s, some doctors are unaware of how best to help their patients stop taking these drugs. This is in part because there is no one-size-fits-all tapering strategy. It is the withdrawal symptoms, some patients say, that make it necessary for them to continue to access these drugs while slowly tapering.

Dr. Silberman recalled one patient who needed to shave flakes off her pill with a razor blade to slowly decrease her dosage and minimize difficult side effects.

The A.S.A.M.’s new guidelines for reducing a patient’s dosage of a benzodiazepine draw heavily from clinical experience given the sparse and limited research on tapering. They recommend that clinicians assess the risks and the benefits of ongoing benzodiazepine prescribing at least every three months, and, when tapering, consider reducing the current dose by 5 to 10 percent every two to four weeks. The guidelines also say patients who have been taking benzodiazepines for years may require more than a year of tapering, and should be monitored even after the drug has been discontinued.

“Most of us were never warned about the chances of dependency and long-term complications,” said D.E. Foster, a researcher who contributed to the new guidelines and is an advocate for people like himself who have struggled with benzodiazepine complications. Slow tapering can be difficult, he added, “but abrupt tapering can be dangerous.”

The A.S.A.M. guidance came too late for LaTasha Marbury, 49, who lives in Purchase, N.Y., and had become physically dependent on Klonopin. In 2022 she visited an addiction detox facility because she was desperate to stop taking the drug, which she had started for insomnia. Practitioners at the facility weaned her off it in just five days.

Afterward, she cried hysterically and felt hopeless, she said. She experienced night terrors that felt “almost like a lion is in the room but you can’t see it and you’re fighting it,” an inability to sit still and deep depression. She visited another addiction facility in Florida where she received an antidepressant. Within weeks she began to feel much better.

Now, she said, “I sleep like a freaking baby.”

And she wonders: Was this, rather than the benzodiazepine, the drug that she should have been prescribed all along?

“When I think about it — what I went through — I cry,” she said. “It wasn’t a physical pain but it was a mental pain. And I’m thankful to be alive.”

If you are having thoughts of suicide, call or text 988 to reach the 988 Suicide and Crisis Lifeline or go to SpeakingOfSuicide.com/resources for a list of additional resources.

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