What most prescribers and patients don\u2019t understand is that \u201cyou can have symptoms that persist for long periods after you stop them,\u201d said British psychiatrist Mark Horowitz, who specializes in antidepressant withdrawal. According to one analysis<\/a> of patient narratives, people who experienced long-term withdrawal suffered for an average of eight years.<\/p>\n Although psychiatrists have been documenting cases like Munari\u2019s 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.<\/p>\n \u201cIt 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,\u201d Horowitz said.<\/p>\n 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.<\/p>\n \u2018Before I took it, I had feelings\u2019<\/p>\n After spending 13 years on antidepressants, Sven Huber, from western Germany, had lasting problems after stopping the drugs.<\/p>\n Courtesy of the Huber family<\/p>\n Sven Huber found himself Googling depression symptoms in 2009 after reading media coverage of a German soccer player\u2019s suicide that November. The symptoms, he said, \u201cfit on me.\u201d<\/p>\n Huber, a 35-year-old living in western Germany, spent the next 13 years on antidepressants.<\/p>\n His doctor first prescribed him one drug, which helped with his depression but made him sleepy.<\/p>\n 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. \u201cIt felt like a switch was flipped,\u201d he said.<\/p>\n Huber\u2019s 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 \u201cbrain zaps.\u201d He grew anxious, confused, and had suicidal thoughts he\u2019d never had before. All of these are documented symptoms<\/a> of antidepressant withdrawal.<\/p>\n Huber went back on the escitalopram. It seemed he had to choose: Endure extreme side effects or excruciating withdrawal.<\/p>\n 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.<\/p>\n The brain zaps, anxiety and suicidal thoughts all resolved, he said, but the blurry vision, burning feet, sexual dysfunction and emotional numbness persisted.<\/p>\n \u201cI can\u2019t relate to any family members or friends,\u201d he said. \u201cBefore I took it, I had feelings \u2014 bad feelings often \u2014 but I felt something. And now I do not feel anything at all.\u201d<\/p>\n This emptiness, he said, is the hardest to bear. \u201cI would just like to feel like a human,\u201d he said.<\/p>\n Side effects that may never go away<\/p>\n Lasting problems after withdrawal like Huber\u2019s probably occur very infrequently, estimates Nassir Ghaemi, a prominent psychiatrist and professor at Tufts University\u2019s School of Medicine.<\/p>\n \u201cI would say it\u2019s an unknown minority of patients who may have this kind of side effect long term,\u201d he said.<\/p>\n 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.<\/p>\n \u201cI\u2019ve never seen anybody come off long-term Effexor or Cymbalta and not have years of trouble,\u201d 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.<\/p>\n 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.<\/p>\n While patients and researchers often refer to lasting problems as \u201cprotracted withdrawal,\u201d Horowitz and other specialists have suggested terms like \u201cserotonin-induced neurological dysfunction\u201d or \u201cantidepressant withdrawal injury\u201d as umbrella terms for the phenomena.<\/p>\n In survey results published this year<\/a>, Horowitz found the longer someone stays on antidepressants, the more likely they are to suffer from severe and long-lasting conditions after stopping them.<\/p>\n Ghaemi and Horowitz both said it\u2019s important for anyone considering it not to stop antidepressants cold turkey, but rather to carefully taper off of them.<\/p>\n 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 \u201cshouldn\u2019t be given routinely for years and decades. I think that\u2019s where we\u2019re running into problems.\u201d For certain conditions, he adds, such as obsessive-compulsive disorder, long-term use may be recommended.<\/p>\n 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.<\/p>\n \u2018That\u2019s historic\u2019<\/p>\n Huber was relieved to learn he wasn\u2019t alone when he discovered online forums full of people with stories like his, he said.<\/p>\n On a Reddit page<\/a> geared specifically toward people with PSSD, or post-SSRI sexual dysfunction, people talk about having \u201cgenital anaesthesia\u201d 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.<\/p>\n Reading these, \u201cI knew I wasn\u2019t crazy,\u201d Huber said. But it was scary to learn how long people were suffering for, and that there wasn\u2019t a cure.<\/p>\n That page has grown from 700 to 16,000 subscribers over the past five years. Other groups have grown too.<\/p>\n A forum called Surviving Antidepressants<\/a> 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.<\/p>\n While pharmaceutical companies have poured billions into efforts to show antidepressants work, relatively few studies have explored the drugs\u2019 negative effects.<\/p>\n Frustrated by the absence of research, advocates are lobbying governments and the medical establishment to fund studies that could reveal the conditions\u2019 prevalence, causes, and possible cures. Some patients are spending their own money on research.<\/p>\n 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.<\/p>\n \u201cThat\u2019s historic,\u201d Nick Alves, a spokesperson for the PSSD Network said about this kind of institutional involvement. \u201cThat\u2019s huge.\u201d<\/p>\n Another organization, the Antidepressant Coalition for Education<\/a>, is pushing people to report their withdrawal experiences to the U.S. Food and Drug Administration.<\/p>\n \u2018People don\u2019t learn this stuff in medical school\u2019<\/p>\n After experiencing seven years of withdrawal symptoms from Paxil, Adele Framer started an online community forum in 2011.<\/p>\n Courtesy of the Framer family<\/p>\n Adele Framer started the online forum Surviving Antidepressants in 2011, following seven years of withdrawal symptoms after quitting an antidepressant.<\/p>\n On the website, volunteer moderators share best practices for tapering, often referring to a handbook<\/a> for doctors written by Horowitz, the British psychiatrist. His method of reducing one\u2019s dose gradually \u2014 by 10% of the previous dose each month over a year or more, for example \u2014 differs dramatically from the standard medical guidance of tapering over a few weeks.<\/p>\n 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<\/a> and common symptoms of protracted withdrawal.<\/p>\n \u201cThere\u2019s a hidden public health problem in people experiencing withdrawal symptoms because they and their doctors don\u2019t know how to gradually reduce the dosage,\u201d she said, and \u201cpeople don\u2019t learn this stuff in medical school.\u201d<\/p>\n Recently, Framer has turned her attention to a new endeavor: a nonprofit called the Psychotropic Deprescribing Council, which she founded in 2023. The council\u2019s 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.<\/p>\n 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 \u201cwe would not want people not to take the medications.\u201d<\/p>\n But because the group received complaints about PSSD from patients, he said, the APA\u2019s research council has begun to review the literature on PSSD and other lasting problems from antidepressants. It will publish the results.<\/p>\n Horowitz, the British psychiatrist, said he welcomes the APA\u2019s interest, but a review of the literature will likely be inadequate. \u201cWhen you do a review, you\u2019re only reviewing what exists,\u201d he said.<\/p>\n Most existing studies on modern antidepressants, known as SSRIs and SNRIs, weren\u2019t designed to assess withdrawal or long-term use. Those that do have findings on withdrawal are mostly focused on short-term symptoms experienced by people who have used the drugs for months rather than years. This makes it hard to estimate the real prevalence and severity of the problem.<\/p>\n![\"A](\"https:\/\/www.newsbeep.com\/us\/wp-content\/uploads\/2025\/07\/0be84e-20250707-sven-huber-600.jpg\"\/)
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