When Emily Zeid was in her early 20s, she started experiencing panic attacks after surviving a sexual assault. She lived near Branson, Missouri, where wait lists for local mental health services ran 8 months.
So she went to her primary care doctor, who prescribed Xanax for daily use but gave her little information about the risks. Zeid says the meds provided relief at first, but that was quickly overshadowed by the side effects.
“Like it would help my anxiety, but at the same time, it would make me super irritable and not feel well,” Zeid said. “I’d feel really just lethargic and groggy the next day. I’d do things and not remember, kind of like amnesia. Almost like being drunk, when you’re on them, and it wasn’t enjoyable, by any means.”
Zeid studied ballet and was considering a career as an exercise instructor, but the effects of the medications, which also included dizziness and lightheadedness, caused her to quit dance.
She says doctors dismissed her complaints and instead increased her dose. Within a few months, she was struggling with even routine, daily activities.
“I felt like, just, a shell,” Zeid said.
Even though Xanax, Klonopin, Valium and other benzodiazepines have been around for decades, they’ve only been thoroughly tested in trials for a few weeks’ use. Not even drug companies understand exactly what these drugs do over longer periods, although health experts now understand they can significantly impair cognition, memory and concentration, among other side effects.
However, even before the pandemic, almost 6% of Missourians were prescribed benzodiazepines, according to industry data. Research suggests that this rate, which is among the highest in the country, is a result of the shortage of mental care providers in Missouri.
Washington University psychiatrist Jessi Gold explains that, today, antidepressants and therapy are the anxiety treatments preferred by specialists. While benzodiazepines still have a place, they are typically reserved only for short-term or crisis use.
“They are definitely, like, the psychiatrist version of an opiate,” Gold says. “For us, they are definitely the medicine that we go, like, ‘Does this person need this? If this is right? Do I need to be thinking about taking them off of this?’”
The COVID-19 pandemic sent already high demand for anxiety treatment soaring. Almost 36% of Americans reported having symptoms of anxiety disorders during the coronavirus pandemic, and during the first month that COVID-19 began spreading in the U.S., prescriptions for benzodiazepine medications increased by a third.
Missouri residents report anxiety symptoms at one of the highest rates in the country, but the state also has the largest percentage of mental health provider shortage areas in the country, a problem that Missouri mental health professionals blame on the low reimbursement rates paid for their services.
That leaves many Missourians turning to primary care doctors for mental health care. Harvard researchers have found that these physicians, rather than psychiatrists, are doing much of the prescribing of benzodiazepines.
Even for specialists, the increasingly quick-turn nature of doctor’s appointments can lead physicians to opt for the quick fix that benzodiazepines provide.
“Sometimes those medicines, like you can tell them they’ll work, and you can give it to them, and you don’t have to have as long of a conversation about everything,” Gold says, “and that can just be a way to say, ‘Here, I made it better.'”
Taking benzodiazepines for longer than a few weeks can lead to even more side effects. Although it’s unclear how many Missourians are long-term users, studies have estimated that about one-in-four benzodiazepine patients in the U.S. use them for four months or more.
As with opioids, the state’s most vulnerable populations also appear to be at risk for problematic use of benzodiazepines, and for some of the same reasons. In fact, you can find high rates of opioid abuse — which is endemic in Missouri — and high rates of benzodiazepine prescriptions in the very same states, such as West Virginia, New Hampshire, Maryland, Massachusetts and Connecticut.
“We see more benzodiazepine and opioid prescribing in areas where there’s socio-economic distress, where access to health care is not as equitable and where people lack alternate treatments for things like anxiety, including things like psychotherapy,” said Dr. Anna Lembke, a Stanford psychiatrist and researcher.
Retired Kansas City lawyer Webb Gilmore was prescribed temazepam more than 20 years ago to help treat his insomnia, another condition that’s been commonly treated with benzodiazepines.
He says his doctor gave him no warnings about the risk of the medication, and it initially seemed to make his problem disappear.
“I thought it was a miracle drug,” Gilmore recalls.
But Gilmore says he eventually felt symptoms like agitation and shakiness as well as low mood during the day, after the sleep medication had worn off.
“I started thinking, ‘I wonder if the medicine I’m taking is causing me to have — I just called it ‘daytime withdrawal,’’” Gilmore said.
Long-term users can experience withdrawal symptoms between doses, or tolerance that decreases the drug’s effectiveness for some uses.
At first, doctors recommended that Gilmore also start taking the sleep medication during the day or switch to a different benzodiazepine. When these approaches didn’t work, they took Gilmore off the medication altogether.
However, dependence on benzodiazepines increases over time, which can trigger more severe withdrawal symptoms when patients decide to quit.
After following his doctor’s recommendation to quickly lower his dose, Gilmore experienced symptoms such as restlessness, pounding heart, blood pressure spikes, loss of appetite, depression, and memory and cognitive problems. These forced him to withdraw from everyday activities.
“For over a year, I couldn’t work, read, watch television, interact with family and friends, concentrate or articulate my thoughts, or much of anything else,” Gilmore said.
Researchers found that some people may continue to have side effects even long after they completely stop taking benzodiazepines. Even today, three years after he started to get off temazepam, Gilmore says he still feels their residual effects.
“It can take years to taper down slowly, and even after they’ve gotten off these medications, they continue to experience protracted withdrawal symptoms,” Lembke says. “So it can really be a devastating experience for some people.”
Government agencies and lawmakers have recently taken steps to address some of the problems that contribute to problematic benzodiazepine use.
The FDA in the last year issued a black box warning about the risks of benzodiazepines, and a recently approved law in Missouri will increase insurance reimbursement for mental health care, a move that advocates say will help address provider shortages.
In August, Missouri became last state in the U.S. to enforce a federal mental health parity law. That push was led in part by state Sen. Greg Razer, a Kansas City Democrat who became aware of the issue through reporting by KCUR.
Many mental health specialists, including Saint Louis psychiatrist Jessi Gold, applaud the increased attention about the risk of benzodiazepines, though Gold cautions against the tendency among some doctors to eschew use of these drugs entirely.
Meanwhile, many of the growing benzodiazepine patient support and advocacy groups — such as the Benzo Warrior Community, BenzoBuddies and the Benzodiazepine Information Coalition — say more needs to be done to warn patients, as well as to help long-term users ween off of them.
Former U.S. Army Sergeant Angela Peacock of St. Louis spent years struggling with the side effects and withdrawal from multiple benzodiazpines, which were prescribed after she struggled with anxiety following her deployment in Iraq. She earned a Master of Social Work degree at Washington University in hopes of helping fellow anxiety-sufferers.
Frustrated with the medical system and its slow pace of change, though, Peacock joined the Benzodiazepine Information Coalition as a way to educate patients directly.
“Changing the system is extremely difficult, and it’s not going to happen overnight,” Peacock says. “So the more you can educate a patient, or the patient can educate themselves. It’s really like, ‘Here’s a bunch of information. You kinda have to figure this out for yourself. We’re really sorry it’s like this, but this is the state of affairs right now.'”
After a year, Emily Zeid finally stopped taking Xanax. She described the months of withdrawal as “entering the gates of hell.”
Zeid says she also received help from patient groups, and she’s continued to offer her support to others going through benzodiazepine withdrawal. Now that she’s through the worst of it, Zeid says she’s taking a different approach to dealing with trauma and the anxiety that once overwhelmed her.
“I’ve learned that you have to process it and deal with it,” Zeid says. “It’s far better than the anxiety you’d ever experience from benzo damage.”