Stopping SSRIs Can Be Hard. Researchers Are Unsure Why

Summary

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Short Wave Podcast Summary

Episode: Stopping SSRIs Can Be Hard. Researchers Are Unsure Why
Date: September 2, 2025
Host: Emily Kwong (NPR)
Guests: Emily Corwin (investigative journalist, APM Reports), Dr. Michael Hengartner (Professor of Clinical Psychology, Kaleidos University of Applied Sciences, Switzerland)

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Main Theme / Purpose

This episode examines the difficulties some people have when trying to discontinue SSRIs (selective serotonin reuptake inhibitors), the most commonly prescribed antidepressants in the U.S. Host Emily Kwong, alongside investigative journalist Emily Corwin and clinical psychologist Michael Hengartner, explore why science has yet to fully understand long-term SSRI withdrawal effects, what patients are experiencing, and what research is lacking in this area.

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Key Discussion Points and Insights

1. Prevalence and Personal Story

• SSRIs are the most common antidepressants: Over 1 in 10 people in the U.S. take them (00:17).
• Emily Corwin’s Experience: Emily Corwin, who was on Lexapro (an SSRI) for 15 years, shared her struggle discontinuing the drug (00:41).
  • She started SSRIs for mild depression and remained on them, as “nobody ever suggested I do anything else.” (Emily Corwin, 01:04)
  • When tapering off Lexapro, Corwin suffered unexpected and intense symptoms:

    “I just, for the first time in my life, experienced a kind of excruciating existential dread that didn’t make any sense to me. I’d never had anything like that before. I felt kind of out of body experience.”
    (Emily Corwin, 01:22)

  • Returning to her original dose relieved these symptoms instantly.

2. Patient Movement and Research Gaps

• Corwin investigated further and “an entire Internet of information about withdrawal opened up” (02:07).
• Thousands form online communities and nonprofits, sharing experiences of prolonged withdrawal—lasting months or years (02:15).
• Lack of clear definition and consensus around SSRI withdrawal:

  “The whole problem starts with a lack of definition. And so actually we’re left quite in the void.”
  (Dr. Michael Hengartner, 02:38)

3. Medical Guidance and Risks of Stopping SSRIs

• Do not abruptly stop SSRIs:

  “Abruptly stopping a drug is probably the worst thing you could do.”
  (Dr. Michael Hengartner, 05:01)

• There’s no universal rule for tapering; the process must be individually tailored. Some can taper off quickly, others need more time. More research is needed to predict who needs what (05:09).

4. Withdrawal Symptoms—Beyond The Known List

• Symptoms range widely and include:
  • Somatic/Neurologic: Dizziness, “brain zaps” (described as electrical shocks in the head), gait instability (05:56).
  • Physical: Flu-like symptoms—sleep problems, appetite changes, diarrhea (06:22).
  • Psychological: Mood changes, irritability, panic, anxiety (06:54).
• “Brain zaps” is a patient-coined term, not a formal medical diagnosis.

5. Contested Research and Study Limitations

• A recent JAMA Psychiatry paper (last month) analyzed existing research and concluded no significant long-term withdrawal symptoms (07:14).
  • Critique: The paper was based on mostly short-term (8-12 week) studies, not reflective of real-world, multi-year SSRI use:

    “You cannot expect that when you look at eight week studies or when people stop a drug after eight weeks, that this is informative or tells me something about what happens if someone stops the drug after five years.”
    (Dr. Michael Hengartner, 07:14)

• Most research is patient surveys or anecdotes; there's a gap in robust, long-term studies (08:20).

6. What Research Is Needed?

• Dr. Hengartner calls for honest, long-term studies:
  • Enrolls patients on SSRIs for varying durations (six months, 12, 24 months, etc.)
  • Randomly assigns abrupt vs. slow tapering vs. placebo, then follows for months to distinguish withdrawal from relapse (08:48).
  • “But such a study has never been done.” (Dr. Michael Hengartner, 09:38)
  • Why?

    “Most drug trials…are sponsored by the pharmaceutical industry…No one is interested in studying something that they actually could find something that they do not want to see…So the best way to avoid this problem is you don’t study it.”
    (Dr. Michael Hengartner, 09:42)

  • Regulatory agencies don’t require withdrawal studies.

7. SSRI Withdrawal vs. Relapse

• How can we tell withdrawal apart from depression/anxiety relapse?
  • Hengartner’s research: If “relapse” is mostly due to withdrawal, symptoms appear rapidly after stopping the drug, then lessen; if it's a genuine relapse, risk would increase over time.
  • Data suggest most “relapses” after discontinuation happen quickly—not slowly over time—challenging assumptions that SSRIs prevent recurrence (11:00).

    “…the large bulk of relapses or event coded as relapses occur quite quickly after discontinuation and thereafter, there's mostly salient [not much occurs after].”
    (Dr. Michael Hengartner, 12:11)

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Memorable Quotes & Moments

• On lack of research and patient advocacy:

  “…it’s a real credit to the patients who have been organizing and lobbying on their own behalf that the APA is paying attention. I very much hope that the APA…recognizes that the literature has overwhelmingly looked at short term use…and that most of the people…have used these drugs for many, many years…”
  (Emily Corwin, 12:47)

• Dr. Hengartner:

  “To find out who needs what, we…need more research. And we’re not there yet. Not at all.”
  (05:09)

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Important Timestamps

• 00:17: SSRIs prevalence and introduction
• 00:41 - 01:59: Emily Corwin describes her personal withdrawal experience
• 02:07 - 02:38: Discovery of online withdrawal communities and lack of clear definition
• 05:01: Warnings against abruptly stopping SSRIs
• 05:56 - 06:54: Detailed withdrawal symptoms
• 07:14 - 08:20: Critique of existing research
• 08:48 - 09:37: What honest research would look like; why it's not done
• 10:32 - 12:11: Discussion of withdrawal vs. relapse and Hengartner's findings
• 12:47: Patient advocacy and APA’s emerging interest

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Conclusion

The episode stresses that scientific understanding of long-term SSRI withdrawal is limited, often due to a lack of long-term, independent studies. Patient stories reveal real suffering and are pushing major psychiatric organizations to pay attention. For now, experts recommend individualized tapering plans and more research to uncover who is most at risk for withdrawal, how best to help them, and how to distinguish withdrawal from relapse.
Listeners are cautioned never to stop SSRIs suddenly and to consult healthcare providers for any medication changes.

Transcript

[NPR Sponsor Announcer]

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[Emily Kwong]

You'Re listening to Short Wave from NPR. More than 1 in 10 people in the U.S. 10 take an antidepressant. They're very common. And the most commonly prescribed type are SSRIs or selective serotonin reuptake inhibitors. That's a class of drugs that include Zoloft, Prozac, Lexapro.

[Emily Corwin]

I started using antidepressants when I was in my early 20s.

[Emily Kwong]

Emily Corwin is one of millions of people who have taken an ssri. She was prescribed Lexpro.

[Emily Corwin]

And I went on them really because of circumstantial reasons, probably had mild depression.

[Emily Kwong]

And she stayed on the drug for about 15 years because it was like.

[Emily Corwin]

Nobody ever suggested I do anything else.

[Emily Kwong]

Until around 2022, Emily decided she wanted to stop taking Lexapro. She talked to her doctor and they made a plan to taper to slowly decrease her dose over the course of one month, which can be a pretty common timeline.

[Emily Corwin]

And I just for the first time in my life, experienced a kind of excruciating existential dread that didn't make any sense to me. I'd never had anything like that before. I felt kind of out of body experience.

[Emily Kwong]

Now, stopping SSRIs can cause unpleasant side effects. Doctors have long acknowledged this. There are symptoms like dizziness, anxiety, insomnia and nausea. But what Emily experienced was different. After a few weeks, she went back to her original dose.

[Emily Corwin]

Everything got better.

[Emily Kwong]

But Emily is an investigative journalist. She decided to look into the experience. Was anyone else having long term problems getting off of their SSRIs?

[Emily Corwin]

And suddenly an entire Internet of information about withdrawal opened up to me.

[Emily Kwong]

Ever since, as an investigative journalist for APM Reports, Emily has been looking into people's experiences stopping antidepressants. And she's discovered tens of thousands of people who've turned to online forums to discuss health problems and nonprofit groups calling for more psychiatric research. Because some people are struggling with symptoms for months, even years.

[Michael Hengartner]

The whole problem starts with a lack of definition. And so actually we left quite in the void.

[Emily Kwong]

To understand this growing concern among patients about long term SSRI withdrawal, we called up Michael Hengardner. He's a professor of clinical psychology at Kaleidos University of Applied Sciences in Zurich, Switzerland. And he says this is a symptom of missing research. In fact, experts and psychiatrists disagree on how common this problem is how to prevent it and even what to call it. Today on the show, what we do and don't know about the long term effects of going off an antidepressant and how this patient movement has caught the attention of psychiatry. I'm Emily Kwong and you're listening to Shortwave, the science podcast from NPR.

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[Emily Kwong]

Okay, short wavers. I'm here with Michael Hengartner to talk about some people's experiences getting off their SSRIs long term. And right off the bat, we wanted to state something important. People should not suddenly stop taking their ssri.

[Michael Hengartner]

This is absolutely not recommended. Of course, abruptly stopping a drop is probably the worst thing you could do.

[Emily Kwong]

Is there any like rule of thumb?

[Michael Hengartner]

Yeah, there's no rule of thumb. There is not one single answer to that. But it should be individually tailored towards the needs of every individual patient. There are some people, even if they were on the drugs, let's say for two, three, four years, they can stop the drugs quite quickly, let's say in two or four weeks. For some people it has to go very slowly over a long time and others can stop rather quickly. But to find out who needs what, we of course need more research. And we're not there yet. Not at all.

[Emily Kwong]

Okay. So there's all these patient stories. What kind of symptoms are a certain subset of people experiencing long term?

[Michael Hengartner]

Yeah. So there are many different symptoms, like you can broadly categorize into somatic symptoms. And like sensory neurological symptoms like dizziness or gait instability, brain zaps, this kind of things.

[Emily Kwong]

Yeah, I've heard brain zaps described like electrical shocks in the head. Yeah, go on.

[Michael Hengartner]

So it's not a formal medical term. It's more like people with lived experience chose that term. Yeah. Then we have like flu, like symptoms like general somatic symptoms, like sleep problems, changes in appetite or diarrhea, that kind of stuff. And a lot of psychological symptoms affect mental symptoms, like effective symptoms, mood changes, irritability pan. Yeah, yeah.

[Emily Kwong]

So a study came out last month in the journal JAMA Psychiatry where the authors did an analysis of previous research and they found there were no significant withdrawal symptoms long term for SSRIs. Can you talk about that paper and what you thought of it?

[Michael Hengartner]

This study, the first part of the analysis, looked at studies where there was a systematic assessment of withdrawal symptoms and they found a few studies. The problem is that these were mostly short term studies. So eight weeks duration. The majority of these studies were eight week efficacy studies. There were a few 12 week studies and one 26 week study, which is nothing compared to the months and years most people are on antidepressants. We know that withdrawal is, is results from neurophysiological adaptations to a substance or something that develops slowly over time. You cannot expect that when you look at eight week studies or when people stop a drug after eight weeks, that this is informative or tells me something about what happens if someone stops the drug after five years. Of course, they found rather small effect sizes.

[Emily Kwong]

Yeah. Now, most of the research out there regarding long term withdrawal symptoms is survey studies, anecdotal information coming from patients, some of whom have formed online communities and even nonprofits calling for more research. If you could wave a magic wand, what kind of SSRI research would you want to see done?

[Michael Hengartner]

If you really want an honest study that really wants to know what happens long term, you have a large diverse sample of rather short term users, let's say six months. And then you got people who were on the drugs for 12 months, 24 months and so on. Okay. And then what you do then you randomize those abrupt discontinuation, possibly then a slow taper, a faster taper, and a very slow hyperbolic taper you can also control with people who are abruptly switch to placebo, for instance, and then you follow up those people for several months.

[Emily Kwong]

Yeah.

[Michael Hengartner]

But such a study has never been done.

[Emily Kwong]

Why do you think that is?

[Michael Hengartner]

Well, most drug trials, of course, they are sponsored by the pharmaceutical industry. The vast majority are efficacy trials. No one is interested in studying something that they actually they could find something that they do not want to see, you know. So the best way to avoid this problem is you don't study it. And drug regulators don't require such studies. That's the problem.

[Emily Kwong]

Got it. Okay. Not to mention it would be like a tricky ethical question to give some long term SSRI patients placebo suddenly. But I hear you that there's not enough research basically into the long term impacts of tapering from an ssri. And you've done some research, what does your research show?

[Michael Hengartner]

Well, how do we know that, let's say if someone experiences like mood disturbances or that kind of stuff, anxiety, panic, that this is not a return of the mental disorder.

[Emily Kwong]

So relapse, so depression or anxiety symptoms coming back. How did you look into that?

[Michael Hengartner]

So what we did is we looked at relapse prevention trials, for instance, and then we tried to figure out what happens when people discontinue their drugs as compared to people who go on with the drugs. And what would we expect if this is in most cases or largely a withdrawal reaction? Of course you would expect that symptoms appear quite rapidly and quite instantly after drug was discontinued. And then after that early risk period, actually it was. There's not much difference to those patients who remain on the drug. And that's actually what we see in the data. So actually that challenges the notion that the drugs actually prevents the reoccurrent or the relapse into a mental disorder, because then we would see that the risk of relapse actually constantly increases with time, which we would expect. And not that the large bulk of relapses or event coded as relapses occur quite quickly after discontinuation and thereafter, there's mostly salient.

[Emily Kwong]

As for Emily Corwin, the investigative journalist we met in the beginning of the story, she wants to see more research too. In her reporting, she reached out to Dr. Alan Schatzberg, a Stanford psychiatrist and consultant to the American Psychiatric Association, a prestigious group that represents psychiatry. He told Emily that the APA's Research Council has begun to review the existing literature on long term problems with antidepressants and plans to publish their results. In an email to Short Wave, APA spokesperson Erin Connors confirmed this is true and Emily thinks that's great.

[Emily Corwin]

I think it's a real credit to the patients who have been organizing and lobbying on their own behalf that the APA is paying attention. I very much hope that the apa, when they do their literature review, that they recognize that the literature has overwhelmingly looked at short term use of antidepressants and I hope that they recognize that most of the people who are complaining to them asking for more research, have used these drugs for many, many years before they experience debilitating withdrawal experiences. So I just hope that the APA is aware of that and considering that when they do their review and until.

[Emily Kwong]

Then, Emily plans to keep going with this reporting. This episode was produced by Rachel Carlson and edited by our showrunner, Rebecca Ramirez. Tyler Jones checked the facts. Jimmy Keeley was the audio engineer. Special thanks to John Hannah Hamilton, Beth Donovan is our Senior Director and Colin Campbell is our senior Vice President of Podcasting Strategy. I'm Emily Kwong. Thank you for listening to Short Wave from N.

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