At 25, Caroline Chambliss was prescribed one drug for anxiety; decades later, she was on five. Now she's trying extricate herself from an addiction nightmare.
Caroline Chambliss was 25, a New College grad working in the state legislature in Tallahassee, when the trauma of her chaotic Sarasota childhood — her father died by suicide when she was 11, her mother was frequently hospitalized — precipitated her own mental health crisis.
At the time, the psychiatrist she saw put her on a single medication, Xanax, one of the group of drugs known as benzodiazepines, typically prescribed for anxiety and insomnia. Ten years later, fearing an over-reliance on the drug, Chambliss asked to be put on something "lesser." She was given Clonazepam, no less powerful and every bit as potentially addictive as any of the so-called "z drugs," though that possibility was never voiced.
"No one ever mentioned addiction. Never," says Chambliss, a soft-spoken woman with cornflower blue eyes that sporadically fill with tears as she shares her story. "Did they help with my symptoms? I really have no idea. They just became a part of my life. And eventually, your fear of getting rid of these medications becomes profound."
For the next three decades Chambliss maintained a professional career despite her ongoing mental health struggles, working first for county government and then, for many years, for social service nonprofits. Eventually, she was put on four other medications; with at least one, she didn’t even know its purpose.
When she complained of side effects, she was assured they were temporary, that they would disappear when her system became more accustomed to the drug. Or she was offered another drug as counter-balance.
"Every time I’d show up, with any manifestation — some of which I would consider normal life events — they’d throw another drug at it," she says. "You stop knowing what is coming from what. Nobody ever tells you when you are going to be better or when you will be able to come off the medication. And I never asked."
Four years ago, she could no longer hold down a full-time job. Her mind was "in a fog," she couldn’t concentrate and it became harder to function in any capacity. She felt like "a total and complete failure." Working hourly jobs to get by financially, she became increasingly isolated and withdrawn, fearing the judgment that might come if she sought help.
Finally, a year ago, she tried to take the handful of pills she’d been downing for so long and literally gagged.
"I just choked on it all," she says. "I said, ‘I cannot put these in my mouth. This is causing me more harm than good.'"
That’s when Chambliss, who has no health insurance, decided to wean herself off the benzodiazepines by choice, a journey relatively unsupported — or at least not advocated — by the medical establishment. Though she found a sympathetic psychiatrist willing to work with her — and a generous church member who agreed to pay for her appointments for six months — neither she nor her doctor had experience with or knowledge of best withdrawal practices.
In desperation, Chambliss turned to a Facebook group made up of others also trying to withdraw from "benzos." There she found a network of compassionate, empathetic individuals navigating the same uncharted waters, who were familiar with her symptoms and generous with their suggestions.
"This forum was the only thing I found and I found it because I said, ‘I don’t see myself getting better and I’m not going to do this anymore,’" Chambliss says. "There is no rehab program for something like this, no program or protocol. We seem to be doing it ourselves, alone."
According to a recent online essay by two psychiatric professors and a psychiatric resident at the Baylor College of Medicine, Chambliss is not alone. An online forum called www.benzobuddies.org receives an average 250,000 hits a months and a generic search for "benzo withdrawal" on Youtube brings up 14,000 personal video blogs.
The stories posted are all in the same vein: Medications given without warning of the potential for addiction. Drugs prescribed at one stage of life — usually during a crisis — and never reconsidered, tapered or discontinued. One medication layered on top of another, to the point of obscuring what is a symptom and what is a side effect.
It’s a dangerous pattern that extends beyond benzodiazepines to anti-depressants, mood stabilizers and anti-psychotics. (I’ll save my personal saga of successfully reducing my son’s psychiatric medications for another column.)
"The message is that physicians have been unprepared for these withdrawal disorders and are unable to treat or even guide patients through complicated withdrawal from these substances," the authors of the essay wrote. "If clinicians are unaware of the complexity [of withdrawal]… they may diagnose these symptoms as manifestations of the underlying original mental illness, a new physical condition, or perhaps an adverse effect of a different medication."
Experiencing the world without the drug that obscured her organic sensibilities for decades has been challenging and frightening, Chambliss says.
"I’ve experienced a heightened sense of awareness, to the point of nervousness about my surroundings and being with people," she says. "Sometimes it’s overwhelming. But the positive is that I am feeling emotions I haven’t been in touch with for a very long time. What I’m finding is that I finally have hope for recovery and this mission has given me a whole new outlook, a new strength."
In fact, with her years of social service experience, Chambliss has already envisioned a nonprofit that could assist people like her; she’s even named it.
"They talk about having ‘open window ‘ days — days that are good and let the air and light come in," she says. "So that’s what I would name it, Open Windows."
Chambliss is now committed not just to her own recovery, but to helping others caught in the same medical bind.
"I’ve lost a lot, but I am determined for myself and my health and my ability to perform and have a life," she says. "But I’m also determined to support this community of people who are just trying to do something that’s good for them."
Contact columnist Carrie Seidman at 941-361-4834 or firstname.lastname@example.org. Follow her on Twitter @CarrieSeidman and Facebook at facebook.com/cseidman.