ORIG 08/30/17 Marjorie Carmen is organizing a conference to raise awareness about the dangers of benzodiazepine drugs. She is pictured in her office in Bend on Wednesday, August 30, 2017. Carmen's father painted the watercolor picture in the background, which Carmen feels represents her journey and struggle with benzodiazepines. (Joe Kline/Bulletin photo)

It’s been more than six years since Marjorie Carmen last took the medication that had tormented her for years and still consumes her daily energies and attention. Prescribed Ativan in 2007 to help her deal with anxiety and sleeplessness, she became dependent on the drug and struggled through years of withdrawal.

The class of drugs known as benzodiazepines, including Ativan, Valium and Xanax, are so addictive, they are recommended only for short-term use.

But doctors routinely keep patients on the drugs for years and offer little help to patients who want to get off them.

Even now, at 77, Carmen estimates she is only 96 percent recovered.

“It’s been like a roller coaster,” she says. “Because you never know when a benzo symptom is going to pop up.”

As part of her recovery, Carmen channeled her anger over her prescribed misery into learning about the risks of benzodiazepines and helping others deal with their benzo struggles.

“Somewhere in the midst of the gloom, I said, ‘I’m going to gather these people together, and I’m going to solve this problem,” Carmen said.

That effort has culminated in a medical conference to be held at St. Charles Bend Sept. 15-17 with the aim of changing prescribing patterns, disseminating information about risks, and offering help to patients still caught in its grips.

“We’re not out to ban benzos,” she says. “We’re not out to litigate or castigate. We are out to educate.”

Overprescribing

The conference, while open to anyone, is primarily targeted at doctors who are writing prescriptions for benzodiazepines for their patients.

“Over the years, we’ve become somewhat cavalier as medical prescribers in prescribing benzodiazepines,” says Dr. Steven Wright, an addiction medicine specialist from Denver, Colo., and medical director for the conference.

Benzodiazepines, he says, were approved after only limited studies that didn’t identify how well or how long they would work, or when side effects would begin to appear. Doctors generally expect that side effects of drugs will arise within the first few months that patients take them. And if problems arise later on, he says, doctors might attribute those to a worsening of the underlying problem.

“We now realize that for proportion of individuals, this may not be the case,” Wright says. “And the benzodiazepines maybe changing the central nervous system in a way that the anxiety-related features are amplifying.”

In other words, the drugs may be worsening the symptoms rather than alleviating them. Studies show that for anxiety and insomnia, benzodiazepines don’t fare much better than placebos after a few weeks of treatment.

That’s similar to what many pain specialists believe is happening with opioids in chronic pain patients. The longer patients take those drugs, the worse their pain becomes.

But sorting out side effects from the progression of a patient’s illness is tricky for doctors, and little research has been done to help clinicians figure it out.

“Among the various needs that we have is the research agenda that can look at this particular concept,” Wright says, “and see if that’s really the case.”

Increased use

Concerns over benzodiazepines are not new. Congressional hearings in the 1970s highlighted the dangers of dependence. In the U.K., researchers documented the difficulties of protracted withdrawal symptoms, and in 2002, U.S. clinicians formed a study group that concluded there was no evidence supporting the long-term use of the drugs for any mental health condition.

Still, use continues to rise.

National surveys of U.S. households from 1996 to 2013 found that the percentage of adults who filled a benzodiazepine prescription increased by about 30 percent.

When researchers from Harvard Medical School reviewed records for some 65,000 patients in 16 primary care practices in Massachusetts in 2015, they found 15 percent had been prescribed at least one benzodiazepine. Furthermore, many of the patients had conditions that were known risk factors for complications with benzodiazepines, including increased age, pulmonary diseases, osteoporosis and substance use disorders.

“Can we say that prescribing more benzodiazepines and opioids has led to better or safer patient care? Were the conditions we treat with benzodiazepines woefully under-treated historically or presently that the increase in prescribing warranted?” says Kim Swanson, a licensed psychologist with Mosaic Medical in Bend. “If we, meaning the medical community, cannot answer yes to these questions, then the medical community has a direct responsibility and impact on improving the health of our communities.”

The medications remain popular among doctors and patients, because they work quickly. Patients dealing with panic attacks, insomnia, seizures, restless leg syndrome or alcohol withdrawal often feel immediate relief when they begin taking them.

Other treatments, whether medications or alternative modalities, may take a while to work, Wright says.

“If an individual presents with really serious anxiety, for example, perhaps it’s appropriate to use a benzodiazepine as a bridging mechanism until the other treatment processes can become effective, and then pull-back from the benzodiazepines after two to four weeks when the other treatments start to work.”

In the shadows

Swanson says it’s unclear why, with all the focus on safer prescribing patterns, use of benzos continues to rise.

“Much less attention has been paid to the shadow epidemic of benzodiazepine prescribing and its consequences than to opioids,” she says.

But there is a considerable crossover between the two problems. According to the CDC, benzodiazepines were involved in 30 percent of overdose deaths in 2013. And prescribing guidelines for opioids now warn against co-prescribing with benzodiazepines.

“What we’ve seen with this emphasis all of a sudden is we know now that opioids will kill you,” Carmen says. “Well, if a benzo is in the mix, then they will kill you, too.”

Conference organizers are hoping to piggyback off the opioid effort.

“It’s huge for us because we don’t have to reinvent the wheel,” said Kristi Miller, project manager for the conference. “We can see what they’re doing with opioids so that we can model the benzodiazepine process after that.”

Overdose prevention groups, for example, have developed tapering schedules for both opioids and benzos. When Carmen was trying to free herself of Ativan, she had to come up with her own tapering schedule. At first she shaved the edges off of her pills to try to slowly reduce the dose. Eventually, she found a pharmacist willing to create a liquid formulation for her, that allowed for gradual dose reductions.

Over time, she turned to alternative strategies to manage her anxiety, including mindfulness programs and breathing techniques. She’s informally shared them with scores of benzo patients who have tracked her down after The Bulletin profiled her struggles in 2014.

She’s created an organization called Advocates for Social Reform, which she is turning into a nonprofit, so that she can provide grant funding for further research. Her dream is to create a network of benzodiazepine recovery houses to help people struggling with dependence on the drugs.

“Unless you’ve walked in benzo shoes,” she says, “you don’t know how horrible it is.”

Carmen says she could spend up to $1 million of her own money putting together the conference and funding a documentary about benzodiazepines and the role she hopes her organization and the conference could have in reducing their use.

“What one little town did to change the paradigm for these particular drugs,” she says.

—Reporter: 541-633-2162, mhawryluk@bendbulletin.com

Want to go?

• The International Benzodiazepine Symposium: “More skills, less pills.”

• Sept. 15-17

• St. Charles Bend

• For more information or to register visit, www.tibs-bend.com