Phillipa Munari started antidepressants in 2003. Her doctor recommended one, she said, after she complained of feeling tired. She didn't think it helped, but she kept taking it anyway. When she decided to stop taking the drug 10 years later, her doctor helped her taper off it.
At first, this went fine.
"And then, six to nine months later, I started feeling horrible," she said. "I had nerve pain. My neck and shoulders were sore all the time. My anxiety was through the roof." These were symptoms Munari had never experienced before.
Munari, who lives in New Brunswick, Canada, said she became so exhausted and physically weak she found it difficult to continue her job at a call center. She spent much of the next two years in bed. To receive disability, she agreed to go back on the drug she'd been on, Effexor. She then weaned off it again, this time much more slowly.
The nerve pain and exhaustion gradually improved, she said, but the anxiety got worse.
"I had complete panic. I couldn't leave the house," she said. Driving in the car, she said, "I'd be in the passenger seat with my eyes closed." It took two more years before things began to improve, she said in an interview as she choked up.
Munari is one of the tens of thousands of people who have turned to online forums to discuss lasting health problems after going off antidepressants. Many say their doctors didn't warn them this could happen, and didn't believe them when they said they were having a problem.
Doctors have long understood that stopping antidepressants can cause short-term withdrawal, with patients suffering from symptoms like dizziness, anxiety, insomnia and nausea.
What most prescribers and patients don't understand is that "you can have symptoms that persist for long periods after you stop them," said British psychiatrist Mark Horowitz, who specializes in antidepressant withdrawal. According to one analysis of patient narratives, people who experienced long-term withdrawal suffered for an average of eight years.
Although psychiatrists have been documenting cases like Munari's for decades, no large-scale studies on the problem exist. Because of that, experts still disagree on how common this kind of condition is, how to prevent it, or even what to call it.
"It should be very concerning to the medical system and the public that there are tens of millions of people walking around on drugs whose long-term exposure and withdrawal effects we do not understand," Horowitz said.
Now, survivors of antidepressant withdrawal and related conditions are coming together online and pushing for education, research and recognition. They say prescribers must inform themselves about these issues and warn patients about them before starting or keeping them on the drugs.
"Before I took it, I had feelings"
Sven Huber found himself Googling depression symptoms in 2009 after reading media coverage of a German soccer player's suicide that November. The symptoms, he said, "fit on me."
Huber, a 35-year-old living in western Germany, spent the next 13 years on antidepressants.
His doctor first prescribed him one drug, which helped with his depression but made him sleepy.
Huber said he then switched to escitalopram (marketed as Lexapro), but that one was even worse. The day after he started it, Huber said, his genitals went numb and his emotions became blunted. He lost his libido, his vision went blurry, his feet felt like they were burning, and his cognition and short-term memory became unreliable, he said. "It felt like a switch was flipped," he said.
Huber's doctor recommended he wean off the medication over a few weeks. But immediately, Huber began experiencing sensations like electrical shocks in his head, known in psychiatry as "brain zaps." He grew anxious, confused, and had suicidal thoughts he'd never had before. All of these are documented symptoms of antidepressant withdrawal.
If you or someone you know is in crisis, contact the 988 Suicide & Crisis Lifeline via call, text or chat.
Huber went back on the escitalopram. It seemed he had to choose: Endure extreme side effects or excruciating withdrawal.
For nine years, Huber struggled to taper off the drugs, failing to quit them five times. Finally, a year and a half ago, he took his last dose.
The brain zaps, anxiety and suicidal thoughts all resolved, he said, but the blurry vision, burning feet, sexual dysfunction and emotional numbness persisted.
"I can't relate to any family members or friends," he said. "Before I took it, I had feelings – bad feelings often – but I felt something. And now I do not feel anything at all."
This emptiness, he said, is the hardest to bear. "I would just like to feel like a human," he said.
Side effects that may never go away
Lasting problems after withdrawal like Huber's probably occur very infrequently, estimates Nassir Ghaemi, a prominent psychiatrist and professor at Tufts University's School of Medicine.
"I would say it's an unknown minority of patients who may have this kind of side effect long term," he said.
But doctors who specialize in antidepressant withdrawal say the true risk of severe and lasting symptoms may be obscured by the fact that many patients try and fail to stop the drugs.
"I've never seen anybody come off long-term Effexor or Cymbalta and not have years of trouble," said Horowitz, the British psychiatrist. While these two drugs are known to be harder to stop, Horowitz said he also frequently sees severe and lasting problems among patients coming off drugs with less risk for withdrawal, like fluoxetine (marketed as Prozac) and escitalopram.
For some people, Horowitz said, these symptoms only begin after stopping the drug, while for others, the symptoms begin like side effects during treatment and get worse after stopping.
While patients and researchers often refer to lasting symptoms as "protracted withdrawal," Horowitz and other specialists have suggested terms like "serotonin-induced neurological dysfunction" or "antidepressant withdrawal injury" as umbrella terms for the phenomena.
Horowitz's research shows the longer someone stays on antidepressants, the more likely they are to suffer from severe and long-lasting conditions after stopping them.
Ghaemi and Horowitz both said it's important for anyone considering it not to stop antidepressants cold turkey, but rather to carefully taper off of them.
Antidepressants can be helpful for short-term relief, said Ghaemi. But for depression, they are most effective in the first six months of use, he said, and "shouldn't be given routinely for years and decades. I think that's where we're running into problems." For certain conditions, he adds, such as obsessive-compulsive disorder, long-term use may be recommended.
A spokesperson for Eli Lilly, which makes Cymbalta and Prozac, and AbbVie, which makes Lexapro, declined to comment for this story. APM Reports and NPR could not reach Viatris, which makes Effexor, for comment.
"That's historic"
Huber was relieved to learn he wasn't alone when he discovered online forums full of people with stories like his, he said.
On a Reddit page geared specifically toward people with PSSD, or post-SSRI sexual dysfunction, people talk about having "genital anesthesia" and no libido while taking and after stopping antidepressants. Many also share the emotional numbness Huber described, saying they can no longer experience love, joy or pleasure, a phenomenon doctors call anhedonia.
Reading these, "I knew I wasn't crazy," Huber said. But it was scary to learn how long people were suffering for, and that there wasn't a cure.
That page has grown from 700 to 16,000 subscribers over the past five years. Other groups have grown too.
A forum called Surviving Antidepressants has 23,000 members. A Facebook group that helps users taper off the antidepressant Cymbalta has 43,000 members. Many more exist on different platforms, for specific drugs and in various languages.
While pharmaceutical companies have poured billions into efforts to show antidepressants work, relatively few studies have explored the drugs' negative effects.
Frustrated by the absence of research, advocates are lobbying governments and the medical establishment to fund studies that could reveal the conditions' prevalence, causes, and possible cures. Some patients are spending their own money on research.
The nonprofit PSSD Network has raised more than $200,000 for research over the past two years, which it directs to a research team at the University of Milan, in Italy. And in response to pressure from the Canadian PSSD Society, the Canadian government recently began funding research into PSSD through small grants through the University of British Columbia.
"That's historic," Nick Alves, a spokesperson for the PSSD Network, said about this kind of institutional involvement. "That's huge."
Another organization, the Antidepressant Coalition for Education, is pushing people to report their withdrawal experiences to the U.S. Food and Drug Administration.
"People don't learn this stuff in medical school"
Adele Framer started the online forum Surviving Antidepressants in 2011, following seven years of withdrawal symptoms after quitting an antidepressant.
On the website, volunteer moderators share best practices for tapering, often referring to a handbook for doctors written by Horowitz, the British psychiatrist. His method of reducing one's dose gradually — by 10% of the previous dose each month over a year or more, for example — differs dramatically from the standard medical guidance of tapering over a few weeks.
Framer has worked with researchers to extract patient narratives from the forum into data that can be analyzed. This data has been used in many published studies. For example, one sought to establish the duration and common symptoms of protracted withdrawal.
"There's a hidden public health problem in people experiencing withdrawal symptoms because they and their doctors don't know how to gradually reduce the dosage," she said, and "people don't learn this stuff in medical school."
Recently, Framer has turned her attention to a new endeavor: a nonprofit called the Psychotropic Deprescribing Council, which she founded in 2023. The council's goals are to develop best practices for tapering off psychotropic medications to minimize risk of withdrawal symptoms and relapse, and to inform clinicians about them.
And now, the influential American Psychiatric Association appears to be paying attention. Dr. Alan Schatzberg, a Stanford psychiatrist and consultant to the APA, said he thinks depression is worse than withdrawal symptoms and warned "we would not want people not to take the medications."
But because the group received complaints about PSSD from patients, he said, the APA's research council has begun to review the literature on PSSD and other lasting problems from antidepressants. It will publish the results.
Horowitz, the British psychiatrist, said he welcomes the APA's interest, but a review of the literature will likely be inadequate. "When you do a review, you're only reviewing what exists," he said.
Most existing studies on modern antidepressants, known as SSRIs and SNRIs, weren't designed to assess withdrawal or long-term use.
Horowitz said he'd like to see government-funded research that follows long-term antidepressant users' experiences after they stop the drugs.
Whether this is likely in the U.S. is uncertain. On the one hand, Secretary of Health Robert F. Kennedy Jr. is an outspoken critic of antidepressants. On the other hand, the Trump administration has cut federal funding for biomedical research, as well as staffing at federal health agencies.
Horowitz said he believes the APA's literature review is a sign patients and advocates are being heard. "It means that pressure has got somewhere."
This story was produced by APM Reports, the investigative reporting unit at American Public Media.
Copyright 2025 NPR