ARI SHAPIRO, HOST:
A growing number of people say antidepressants have left them with debilitating symptoms years, even decades after going off the medications. Increasingly, these people are gathering online and pushing for recognition and research. Emily Corwin with APM Reports has the story.
EMILY CORWIN: It was 2013 when Phillipa Munari decided to go off her antidepressant Effexor, which she'd started 10 years earlier. Her doctor oversaw the process of quitting, which took a few weeks. And at first, it was fine.
PHILLIPA MUNARI: And about six to nine months later, I started feeling horrible. I had nerve pain. My neck and shoulders were sore all the time. My anxiety was through the roof.
CORWIN: All of this was new. Munari says she found it difficult just to stand up. To get disability, a doctor told her to go back on the Effexor, which she later weaned off of more slowly. The nerve pain and exhaustion got better, but she says the debilitating anxiety, it got worse.
MUNARI: It took over two years for my brain to calm down enough that I'm not panicking 24/7.
CORWIN: Munari is one of the tens of thousands of people who have turned to online forums while dealing with long-term consequences from antidepressants. Many say their doctors didn't warn them this could happen and didn't believe them when it did. But increasingly, these symptoms are gaining recognition by academic psychiatrists like Nassir Ghaemi at Tufts University.
NASSIR GHAEMI: I think it's important to understand that severe serotonin withdrawal syndrome does happen with these drugs.
CORWIN: Serotonin withdrawal syndrome - that's what Ghaemi calls the array of problems that can occur after stopping antidepressants. Researchers have been documenting cases for decades, but virtually no large-scale studies on these conditions exist. Because of that, experts still disagree on what to call them, how to prevent them and how common they are.
GHAEMI: I was just going over this with a colleague recently to potentially try to do a research study on it because we don't know.
CORWIN: Ghaemi believes long-term effects like Munari's are probably quite rare. But he says severe short-term withdrawal is far more common. What we do know is the longer you take the drugs, the more likely it is you'll have problems going off them. Ghaemi says treating depression is important.
GHAEMI: The solution is not for everyone to never take them, but maybe not to be on them for 10, 15, 20, 30 years.
CORWIN: To be clear, doctors say don't stop antidepressants cold turkey. It's important to go slow. Sven Huber in western Germany spent 13 years on antidepressants. He says he developed genital numbness one day after he took his first Lexapro pill.
SVEN HUBER: And I also developed extreme emotional numbness.
CORWIN: Huber says the medication did help his mood, but the side effects were too much, so he weaned himself off the drug. He took his last pill a year and a half ago. But the sexual dysfunction and emotional numbness, they haven't gone away.
HUBER: I can't relate to any family members or friends. Before I took it, I had feelings, bad feelings often, but I felt something. And now I do not feel anything at all.
CORWIN: Huber says his doctor told him this was all in his head. But on the internet, he found forums full of people with similar stories. And these online networks are growing. Take the subreddit for people with Huber's condition - post-SSRI sexual dysfunction or PSSD. Five years ago, this Reddit thread had just 1,000 members. Today, 17,000 people subscribe. Nick Alves does outreach for the nonprofit PSSD Network. He says patient advocacy groups like his are starting to get attention, most importantly from institutions.
NICK ALVES: We just got, like, our first ever grants, for example. Like, that's historic in this. That's huge.
CORWIN: These are small research grants funded by the Canadian government. On top of that, Dr. Alan Schatzberg with the influential American Psychiatric Association just told me it has begun looking into the issue. The reason he gave? Because a bunch of people who are suffering spoke up.
For NPR News, I'm Emily Corwin.
SHAPIRO: And that story came from APM Reports. Transcript provided by NPR, Copyright NPR.
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