How a Maine woman reclaimed her life after 30 years of drug therapy
Last modified Feb. 07, 2017, at 12:39 p.m.
Jane Tholen is an angry woman on a mission. Living in low-income housing and getting by on her social security benefits, the 70-year-old former marketing professional says she lost three decades of her life, sacrificing her health, her happiness, her career and her personal relationships to a pharmaceutical nightmare.
About two years ago, bucking the skepticism of the doctors who were treating her, Tholen insisted on being weaned off a cocktail of antidepressants, sleeping pills and antianxiety drugs. What she discovered at the end of that arduous process was her authentic self — battered and exhausted, but mostly intact.
“I’m still here,” she told the Bangor Daily News, looking polished and put-together during a recent interview in her Falmouth home. “This waking-up process is excruciating … I am experiencing a clarity in the last few months that is remarkable, [but] that is also horrifying.”
Horrifying, she explained, as she comes to terms with all that she has lost, but exhilarating as she contemplates the mission ahead — to share her story and spread the word about the problems many people experience using psychoactive drugs.
After trauma, trying to ‘get back to normal’
Tholen was 39 years old, a successful marketing professional living in Boston, when she was mugged by two men in the stairwell of her apartment building. Just four months later, as she was beginning to recover from that trauma, she was attacked in her own living room by a robber who had climbed through the window of her second-floor apartment.
Deeply shaken by these attacks, Tholen sought professional help. She was swiftly prescribed a popular anti-anxiety drug to help her feel better in her life and function more productively in her high-powered career. That was in 1984.
“I thought it would be okay to take a drug to get back to normal,” she said during a recent interview in her rent-subsidized apartment. “But I never got back to normal.”
Instead, Tholen says she embarked on 30 years of pharmaceutical treatment with various combinations of anti-anxietals, antidepressants, sleeping medications, amphetamines and other drugs, prescribed by a series of psychiatrists and primary care providers, both in Massachusetts and in Maine.
Between 1984 and 2014, she used 16 of the 25 most commonly prescribed psychoactive drugs, including Xanax, Zoloft, Prozac, Ativan, Wellbutrin, Effexor, Valium, Concerta, Paxil and others.
Instead of relieving her symptoms, though, the drugs had the opposite effect, Tholen said. She experienced worsening anxiety and depression, as well as nightmares, suicidal thoughts, crushing fatigue, sleeplessness, hyperactivity and loss of ability to focus. Her performance at work suffered, as did her social relationships. She was no longer able to travel, to manage complex projects or enjoy personal activities, like gardening, that had always brought her pleasure.
She knew she was in trouble, Tholen said, but she didn’t know the cause.
“No psychiatrist or doctor ever suggested I get off [the drugs],” she said. Instead, they would tinker with her doses or layer on a new medication to address the side effects of an existing drug. They assured her that her problems were real, and that more medicine was the answer. No one ever suggested the drugs themselves might be the source of her troubles.
Worsening dysfunction, and a decision
By the mid 1990s, Tholen had left her job in desperation and moved to Maine to be closer to her aging parents. She found a position with a marketing agency in Portland, but couldn’t handle the complexity of it in her foggy and distractible frame of mind. She opened her own marketing office, but continued to have trouble following through on the needs of her clients.
In 2007, she filed for bankruptcy. She turned to the Town of Falmouth briefly for general assistance, closed her office and moved into Section 8 housing. In 2012, she was declared 100 percent disabled by her chronic depression and anxiety and started collecting disability payments. All the while, her doctors continued to prescribe the drugs that, she says now, were the cause of her problems.
“I didn’t know the extent of the effects [the drugs] were having on me until I stopped taking them,” she said.
In 2014, exhausted by her worsening symptoms and the grim changes in her life, Tholen started reading up on psychoactive medications and problems associated with them. She found books, websites and articles in professional journals that described her own experiences closely, and gradually, she determined to stop taking the drugs.
“I just got to the end of my rope,” she said, struggling against tears. “I knew I had to stop. I just had to. I knew I was still in here somewhere.”
It wasn’t easy to stop using the drugs her body had become so accustomed to. She experienced distressing side effects, which included hallucinations, pain, loss of muscle control and deep fluctuations in her anxiety and depression. Tholen says no one should ever try this approach without the support of a doctor and the watchful company of a close companion.
But for the last year and a half, Tholen said, she has been free of the pharmaceutical soup that for three decades disrupted her thoughts, clouded her perceptions, undermined her ability to function and, ultimately, deepened rather than alleviated her depression and anxiety.
“I can think again and I can get through a conversation without my brain hitching,” she said. “I’m still coping with some side effects, but I’m in the world again instead of being cut off from it.”
Use of psych drugs is widespread, not well understood
Current data on the use of antidepressant and antianxiety medications is hard to find. Most recent studies draw from 2008 data collected by the U.S. Centers for Disease Control and Prevention. Those figures show that an estimated 11 percent of Americans age 12 and older take an antidepressant. The largest group is white women between 40 and 60 years old.
More than 60 percent of adults who take antidepressant medication have taken it for two years or longer, and 14 percent have taken it for 10 years or longer.
The use of drugs such as Xanax, Ativan and Valium, antianxiety medicines in the benzodiazepine family, is also widespread. Again, data from 2008 show that more than 5 percent of adults between the ages of 18 and 80 had filled at least one prescription that year, many for long-term use. The prevalence of benzodiazepine use increased with age, with 9 percent of people 65 and older using the drugs. Over 30 percent of 65-to 80-year-olds who used a benzodiazepine had long-term prescriptions.
While there’s no doubt that psychoactive drugs are a great benefit to some individuals, there remain questions about the effects of their long term use, especially in combination with other medications. And for some people, the drugs may not be effective at all, or may actually do more harm than good.
Early psychoactive drugs developed in the 1950s included the anti anxiety drug Valium, still in wide use today, and Iproniazid, an early antidepressant no longer on the market in this country.
Hope in the psychiatric community ran high that such drugs, used in conjunction with traditional “talk therapy,” could help patients live symptom-free, according to psychiatrist Robert Croswell, medical director of mental health and substance abuse services at MaineGeneral Health in Waterville.
But, while drug developments in other fields of medicine have made significant progress in reducing illness and death, “That doesn’t seem to be the case in psychiatry,” Croswell said, “despite what the pharmaceutical companies would have you believe.”
In fact, he said, while drug companies have developed third- and fourth-generation antidepressants that claim to fine-tune the treatment of, for example, “sluggish depression” versus “anxious depression,” there’s little evidence the newer drugs offer a significant clinical benefit over the older ones.
“They may have fewer side effects, but they’re really no more effective at treating depression,” he said.
Croswell said doctors used to distinguish between “biological depression,” caused by a chronic chemical imbalance in the body, and “psycho-social depression,” caused by external events like Jane Tholen’s muggings. But current diagnostic guidelines classify all depression as biological, since even acute, one-time psychological trauma results in the release of cortisol and other chemicals in the brain.
The result, he said, is a tendency to prescribe long-term, even life-time, drug treatment, when in many cases, a shorter course of medication, in concert with counseling and lifestyle changes, can often set things right. Unfortunately, he said current changes in medical practice mean that doctors rarely interact on a personal level with their patients, and drug adjustments are often made by mid-level providers without the expertise to clearly understand a patient’s response and when a larger change is called for.
Generally, he said, if a psychoactive drug regimen isn’t effective against depression and anxiety after a few months, it’s time to re-evaluate the options, including the possibility that medication isn’t needed at all. And once a patient stabilizes, there’s no reason not to try cutting back the dose to see if medication is still needed.
Especially in older adults, he said, managing psychoactive drugs is a tricky business. Age-related changes in metabolism and the presence other medications in the body increase the risk of anxiety, confusion, memory loss and other cognitive side effects.
“It’s a shame she went as long as she did,” he said when told Tholen’s story, but he stressed that patients should never change or discontinue their medicines without the support of a physician. “They need to have an assertive conversation with their doctor,” he said. “Never give up your authority.”
Tholen says she’s lost 35 pounds since stopping her drugs. She has established a simple self-care routine that includes a healthy diet, daily exercise and regular social outings. She meditates to help with the lingering anxiety, headaches, anger and other troubles that she lives with. She has a new therapist she likes a lot.
Her interest in music and art is re-emerging, and she’s even toying with picking up some work recording voice-over tapes for commercials and public service announcements.
But her real mission, she said, is to get the word out that antidepressant and antianxiety drugs aren’t for everyone and that it’s essential to be an informed consumer and advocate for yourself, your friends and your family members. She’s hoping to polish her rusty public speaking skills and give talks to medical groups and others who need to hear her message. There may be a book in the works, too.
“I haven’t had any sense of self-worth for years,” Tholen said. “I have looked at the world with all the shades half-drawn.” But now, she said, the shades are wide open, and the world beckons.
This story has been corrected to clarify that Tholen did have the oversight of her physicians as she tapered off her drugs.