Waking up from sadness: Many have trouble getting off antidepressants

Patients, mostly women, can face severe withdrawal after discontinuation; experts say no real exit strategy exists

Some 16 million people in the U.S., mostly women, are estimated to be long-term users of antidepressants.
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Denise Scott had just one day to go before she would feel free.

“Two drops in the morning and two drops at night,” Scott said of her last dose of liquid Klonopin.

A disabled mother of two, Scott had been tapering off the panic-disorder medication for 40 weeks — an incremental measure taken to reduce what is commonly referred to by medical professionals as discontinuation syndrome, fiercely negative physical and psychological reactions to the decrease of such drugs in the system.

Scott was prescribed the Benzodiazepine, Klonopin, along with a slew of antidepressants in 2011 after a cold-turkey attempt to stop taking Zoloft landed her in a psychiatric ward for extreme suicidal thoughts — a first for her. For Scott, getting off the Klonopin and the Zoloft felt more like horrible withdrawals from toxic substances, and she’s not alone.

While getting onto antidepressants is as simple as getting an increasingly common prescription and popping a pill, weaning off the drugs can seem insurmountable, if not impossible, because of these negative side effects. The result is an increasing number of Americans who have become married to their drugs to avoid the pain of getting off them.

“People can get started on the drugs for anxiety, obesity, menopause. You see people prescribe the drugs for anything under the sun,” said Dr. Peter Breggin, an expert in psychiatric withdrawal with a private psychiatry practice in Ithaca, N.Y. “I think they’re among the most difficult drugs to come off — harder to come off than alcohol and opiates.”

“My first three months was really bad,” Scott said by phone from her home in Andalusia, Ala. “I had anxiety, heart palpitations, chest pains, panic attacks.”

Now 61, she has been on some form of antidepressant for 40 years.

“I had a very sad, traumatic childhood,” said Scott, who was first prescribed an antidepressant by her general practitioner. “I went to a regular doctor and told him I was feeling depressed. It was a short visit. He gave me Limbitrol.”

Long-term use of antidepressants has become increasingly common over the past decade, according to a recent National Health and Nutrition Examination Survey study. Some 70 percent of the estimated 16 million long-term users in the United States — defined as having used the drugs more than 24 months — are women.

Data from IMS Health, as reported in a study published in the December Journal of Clinical Psychiatry by lead author Dr. Ramin Mojtabai, shows antidepressants are the most commonly prescribed medication class in the U.S. It links national trends in increased long-term use of antidepressants with treatment in primary-care settings, where most antidepressants are prescribed.

Scott, who did not see a mental-health specialist until 2010, believes her general practitioners repeatedly misdiagnosed her.

“Nobody’s listening,” Scott said. “They just prescribe.”

False positives

With the help of a nonprofit withdrawal program, Scott has been working to become antidepressant-free after finding out last year that she has thyroid disease as well as a hormonal imbalance. Working to address these underlying physical conditions, Scott said she feels better than she has in years.

Experts disagree about the solution to what appears to be the overprescription of antidepressants to women at the primary-care level. Some feel general practitioners should be at the beginning of the diagnostic process, not the end.

“Individuals with moderate or severe depression would probably need medication treatment and psychiatric referral,” Mojtabai, an associate professor at the Johns Hopkins Bloomberg School of Public Health, said in an email.

Mojtabai published findings in the April issue of the journal Psychotherapy and Psychosomatics that found almost two-thirds of a sample of 5,000 patients diagnosed with depression within the previous year did not meet the Diagnostic and Statistical Manual of Mental Disorders criteria for a major depressive episode.

Instead, the patients were given false positive diagnoses, according to Mojtabai’s study.

The Affordable Care Act will expand mental-health and substance-use-disorder benefits for 62 million Americans but does not address some systemic problems.

“In the Affordable Care Act, mental health is one of the essential health benefits, but it isn’t creating tons of psychiatrists,” said Dr. Kenneth Duckworth, medical director for the National Alliance on Mental Illness, who noted access to psychiatrists is limited by many factors, such as location and restrictive insurance benefits. He said preventing improper use of antidepressants is both the doctor’s and the patient’s responsibility.

“Primary-care doctors treat and help a lot of people,” said Duckworth, who cautioned patients to open a dialogue with their doctor if they are being prescribed antidepressants for what are called off-label uses — ones not approved by the U.S. Food and Drug Administration — like insomnia.

Laurie Campbell, 46, said she her general practitioner prescribed the antidepressant Paxil for irritable bowel syndrome — an off-label use for the selective serotonin reuptake inhibitor (SSRI). Her doctor told her it would help her with the anxiety she experienced over feeling the need to be near a bathroom at all times, she said.

“I’m the last person you’d think of being depressed,” said Campbell, an office manager from Croton, Ohio.

That was 15 years ago.

She said the drug changed her personality, affecting her ability to concentrate on reading, but she was unable to get off it.

“Both times I tried to quit on my own, I had dry heaves, diarrhea. I tried to eat, and I gagged, I had akathisia, auditory hallucinations,” she said. She finally sought help and was able to taper off the drug but felt it permanently affected her ability to concentrate and to read, which used to be one of her favorite pastimes.

“Women have far more hormonal changes than men in their lives,” said Dr. Samoon Ahmad, founder of Integrative Center for Wellness in New York. “Just because something may be happening at a given point in their life doesn’t mean they have a diagnosis of major depression.”

Robert Whitaker, author of “Anatomy of an Epidemic,” agreed that more analysis must be made at a diagnostic level before prescribing antidepressants, and he cautioned that these drugs can become a life sentence because of damage believed to be done to the brain after extended exposure.

“Overprescription is much more pronounced with women than with men,” Whitaker said. “We just don’t have good scientific evidence that antidepressants lead to an improved life course in the aggregate.”

But proof is hard to find.

“No one cares,” Whitaker said. “No one cares about what happens to the brain when you go on these drugs.”

Long-term damage?

Almost two-thirds of long-term adult users of antidepressants take SSRIs, according to recent data from the U.S. National Health and Nutrition Examination Survey. SSRIs affect serotonin levels in the brain.

Experts disagree about what exactly happens to the brain when people come off these types of drugs.

“Practitioners are very reluctant to take people off and aren’t trained in taking them off,” said Dr. Larry Davidson, a professor of psychiatry at Yale University. “It’s easier to stay on them.”

Asked what the exit strategy is for people using Cymbalta, for example, a spokeswoman for the drug’s maker, Eli Lilly (which also makes Prozac), said in an email, “The Cymbalta product label includes warnings about when to take Cymbalta and symptoms that may be experienced at discontinuation.” The company’s guide (PDF) on the drug instructs patients not to stop taking it without talking to their health care providers, warning, “Stopping Cymbalta too quickly or changing from another antidepressant too quickly may result in serious symptoms,” including anxiety, trouble sleeping, headaches, dizziness, shock-like sensations and more.

A spokesman for Pfizer, which makes Zoloft, said in an email, “In Zoloft’s U.S. prescribing information, a gradual reduction in the dose rather than abrupt cessation is recommended whenever possible. It is important that patients speak with their health care providers to discuss appropriate treatment options.”

“Almost anything emotionally and behaviorally destructive can happen during withdrawal because serotonin is the most widespread neurotransmitter in the brain,” said Breggin, the psychiatric withdrawal expert.

Coming off SSRIs can cause “all kinds of behavioral and neurological disturbances,” he said, listing some common side effects, such as “shocklike feelings in the head, imbalance, odd feelings in different parts of your body, depression, hopelessness, suicidal feelings and actions, disabling anxiety and persisting sexual dysfunction.”

But Breggin warned not to be discouraged by these side effects, since it is not yet known whether any damage is irreversible.

“There’s a reason to come off,” he said. “You want to try as best as you can to withdraw, because it’s only going to get worse in time.”

‘No turning back’

Once she has successfully tapered off Klonopin, Denise Scott will still have one antidepressant left to stop taking: Cymbalta.

Over her 40-year journey, she has been on Zoloft, Xanax, Lexapro, Effexor, Cymbalta, Limbitrol, Klonopin, Prozac and Pristiq. And those are just the drugs she can remember.

“I honestly thought an antidepressant was my answer, that I needed drugs,” she said, “that I just needed to find the right one.”

As Scott faced her first day without Klonopin, she admitted she was afraid but still determined.

“In two days I’m going to know how I’m going to react without any at all,” she said, based on how her body had reacted in the past. “Tonight, though, is my night of celebration. I’m just going to be brave. There’s no turning back now.”

This story has been updated to clarify Klonopin is a Benzodiazepine.

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