"I'd originally gone on Zoloft [sertraline, a common antidepressant] in an effort to get off marijuana," recalls Ray, 43, a New York City public-relations professional diagnosed with HIV in 2004. But once Ray finally kicked pot, he decided to taper off the Zoloft over the course of six weeks -- and that's where things got unpleasant.
"At random moments throughout the day, it was like a bug zapper was going off in my brain," he recalls. "I'd be dizzy and disoriented. I told my doctor, and he said all that was normal, so I just put up with all of it because I wanted to get off Zoloft. But it wasn't fun."
Ray's story is not unusual. People living with HIV have higher rates of depression than in the general population, yes, but they're far from the only ones who struggle with changing or coming off antidepressants. For decades, anecdotally, and especially since the advent of Prozac-like selective serotonin reuptake inhibitor (SSRI) and serotonin-norepinephrine reuptake inhibitor (SNRI) drugs (including Zoloft, Paxil, Effexor, Celexa and Lexapro), both patients and doctors have talked about trying to come off those meds over the traditionally recommended taper period of a few weeks -- but experiencing a host of unpleasant, sometimes unbearable and debilitating, side effects including headache, nausea, stomach and bowel problems, insomnia, inability to concentrate, increased crying or anxiety, and a general, flu-like wooziness and malaise. (However, it's important to note that not all people have a hard time coming off antidepressants, which can play an important role in overall mental health.)
"It's called discontinuation syndrome," says Lee LaMee, M.S.N., PMHNP, manager of psychiatric services at Chicago's mainly LGBTQ-serving Howard Brown Health center, who says that he sees it often in patients coming off antidepressants. "Paxil and Effexor seem to be the worst culprits."
And let's not forget those infamous, and highly weird, "brain zaps" that Ray experienced, technically called L'Hermitte's sign and more commonly associated with multiple sclerosis. In fact, I distinctly remember failing to renew my Effexor prescription some 20 years ago and walking down the street experiencing dizziness at the slightest turn of my eyes or head, not to mention what felt like a brain full of sizzling Pop Rocks.
But now, finally, anecdotes that have often been dismissed by the psychiatric establishment seem to be turning into hard data, not to mention serious mainstream news coverage, including a recent New York Times story and a major story this month in The New Yorker.
Headlined, "Many People Taking Antidepressants Discover They Cannot Quit," the Times story reported that nearly 25 million adults have been on antidepressants for two years or more -- a 60% increase from 2010 to 2018.
"The drugs have helped millions of people ease depression and anxiety, and are widely regarded as milestones in psychiatric treatment," read the story. "Many, perhaps most, people stop the medications without significant trouble. But the rise in longtime use is also the result of an unanticipated and growing problem: Many who try to quit say they cannot because of withdrawal symptoms they were never warned about."
"Yet," continued the story, "the medical profession has no good answer for people struggling to stop taking the drugs -- no scientifically backed guidelines, no means to determine who's at highest risk, no way to tailor appropriate strategies to individuals."
Hard Data and Official Silence
Research now backs the claims: One study of 180 longtime antidepressant users found that 133 of them experienced withdrawal symptoms, with almost half of the participants saying they actually felt addicted to the drugs.
Another survey of 250 long-term users of (mostly) antidepressants attempting to discontinue their medications found that half rated their withdrawal as severe -- and that half simply could not meet their goal of quitting.
In that study, "people went from cold turkey to [withdrawing over the course of] a year, so you had the whole range," says one of its investigators, David Cohen, Ph.D., M.S.W., a professor of social welfare at University of California, Los Angeles who has more than 25 years' experience helping his patients come off psychiatric meds. "But those who rated it the most severe were coming off the fastest."
What causes discontinuation syndrome? "Coming off anything that alters how your brain functions -- even coffee or tea -- will provoke some kind of reaction," says Cohen. "The brain is no longer getting that feedback from the drug, and it reacts to the removal. It's a bit like a seesaw. You have this rhythm going, but if the person at one end abruptly gets off, the person at the other end is going to come crashing down."
Many feel that the pharmaceutical industry and even the American Psychiatric Association, fearful of cutting into the booming antidepressants market, have been slow to broadcast complications with withdrawal despite the fact that many patients have complained about it for decades now. (Prozac, the first SSRI, was approved by the Food and Drug Administration (FDA) in 1987.) "Most mental health professionals have been denying this could occur," says Cohen, co-author of Your Drug May Be Your Problem, a book on the topic. "The Times story was the big breakthrough. There's been a conspiracy of silence." (The pharma watchdog group Citizens Commission on Human Rights has authored an entire paper alleging this.)
How to Come Off Antidepressants
So you and your mental health provider decide that it's time for you to come off your antidepressant(s) -- say, perhaps, because you think they are giving you unwanted side effects like inability to have an orgasm, or because you went on them for a short period to deal with something and now feel you don't need them.
You have to prepare carefully, says Laura Delano, who created The Withdrawal Project, a step-by-step website to help people do just that -- and to find both digital support and IRL peer support in their area. She created the site, which she says has drawn more than 100,000 visitors in only a year, after undergoing her own months-long withdrawal, which she calls "the most agonizing experience of my life," marked by chronic headaches, vomiting, and nausea as well as paranoia, lack of concentration, body aches, and a skin rash.
Here are the steps she and others say to take:
- Prepare. "You need to communicate with your prescriber, and you need to get your support systems in place," urges Delano. "Is now the right time to do this? Ask yourself how many vacation, sick, or personal days you have, if you'll need to stay out of work for a while or here and there. Do you have short-term disability?"
Cohen agrees: "You might need the time and space for disruption in your life," he says, which can be challenging depending on your level of wealth, commitments, privilege, etc.
- Work out a tapering plan. According to Delano, the optimal taper rate is a 5% to 10% reduction in your dose per month -- yes, per month, not week -- based on the previous month's dose. Meaning that in January, you might reduce the dose from 100 to 90 milligrams (mg), then in February another 10% to 81 mg, in March another 10% to 73 mg, and so on, in ever smaller reductions. "You'll get and stay off faster that way overall," instead of going back to your baseline dose to stave off severe side effects, she says.
Her website also contains information about weighing out beads from capsule pills on a digital scale, how to taper down tablet-form pills, making liquid mixtures, and more. Labels on current antidepressant bottles, she says, give precious little guidance as to how to do all this.
Cohen also suggests the website Surviving Antidepressants for more peer support.
- Stay flexible. "Do not just throw your meds in the toilet," says Cohen. "Go slow, and stay in your comfort zone. Feel it out as you go," and make adjustments accordingly with your provider. "You want to have a provider that respects you and takes you seriously," says LaMee, and if you don't, "in an ideal world, you want to find a new one." And Delano stresses lining up your support network, that handful of friends you can call if withdrawal side effects are driving you crazy in the middle of the night (which also happens to be a great time to go on her or similar websites, where someone somewhere is usually always up, too.)
- Listen to your body. "Let it call the shots and, as much as you can, nap when you're tired and exercise when you have an excess of energy," says Delano, adding that many people on her website have said they "fed their brain" lots of healthy fats like avocado and fish oil when they were withdrawing. "As much as you can, you need to be able to take time off and watch TV for two days if you have to," says Cohen.
He, along with Delano, says that there needs to be more advocacy pressure on pharma, the FDA, and the psychiatric establishment to create better warnings and guidelines around antidepressant withdrawal. "That's definitely something we envision doing in the future," says Delano, adding that a similar movement is afoot in the United Kingdom, via the Council for Evidence-Based Psychiatry.
With all this in mind, though, LaMee says that it's important to remember that antidepressants can be hugely helpful, sometimes even lifesaving, particularly for people with depression severe enough to be causing chronic insomnia, loss of appetite, slowing of motor skills or extreme, chronic anxiety.
"Particularly if someone in your biological family is on an antidepressant that's working for them," he says, "we then know there's at least a 50% chance it'll work on you." He acknowledges that many people are wary of going on psychiatric meds, in part because of the stigma around them. "I just try to give people as much information as possible and tell them that, ultimately, it's their choice."
As for Ray, he says he's been fine without antidepressants in recent years. "I'd go on them again if I were so depressed I thought I was going to kill myself, but I haven't had depression like that in a long time." Anything short of that, he says, "it was such a struggle to get off them that I'd really rather not go on them again."