Adele Framer, also known by her online handle Altostrata, is the founder of SurvivingAntidepressants.org, a critical and comprehensive peer-support website that features several thousand case histories of psychiatric drug withdrawal. The site is a hub of information on the topic, highlighting methods of safe drug tapering and recovery and underscoring the humanity of those in the grips of withdrawal.
Framer arrived at her expertise through personal experience. In 2004, after three years on 10 mg of paroxetine, she went off under medical supervision and suffered symptoms of withdrawal that her doctor discounted as relapse. She then went on to visit more than 50 psychiatrists, trying and failing to find someone knowledgeable in antidepressant withdrawal. Her own research into the topic, including close readings of journals and FDA recommendations, led her to the creation of SurvivingAntidepressants.org in 2011.
Registered members now stand at roughly 14,000, with around 56,000 visitors per month. The site features 6,000 case histories and contains more than 60 topics covering tips on the gradual tapering off of specific drugs. All of the site’s information is pulled from scientific papers, governmental advisories, and package inserts, and much of it has been shared across Facebook and other platforms on the web. The site has received mentions in scientific journals and mainstream outlets such as Psychiatric Times and Psychology Today.
Framer, who grew up in New York, has lived in San Francisco for more than 40 years. She’s now retired from a career in software user design.
The transcript below has been edited for length and clarity. Listen to the audio of the interview here.
Amy Biancolli: Adele Framer, thank you so much for agreeing to speak with me today. First off: a “why.” Why is SurvivingAntidepressants.org so important? Why was it necessary? What role does it play?
Adele Framer: Hi, Amy, thanks for having me, I appreciate it. When I went off of Paxil in 2004, I was under the care of what I thought was an elite psychiatry department up at the University of California, San Francisco. I went off over a few weeks in October—which is the ordinary, the usual, way of going off. And I immediately got severe withdrawal syndrome, which was misdiagnosed and not properly treated. After that I experienced post-acute withdrawal syndrome, which took 11 years for me to recover.
At that time, I hunted around. I very quickly found papers about antidepressant withdrawal syndrome, and paroxetine [Paxil] withdrawal syndrome in particular. And this was in 2004, so it wasn’t a secret. As a matter of fact, the FDA had put a warning about withdrawal syndrome on Paxil in 2001. So this information was out there—and I did spend quite a bit of time trying to persuade my doctors that that’s what I was suffering. I printed out papers for them. I very earnestly tried to engage them in what I thought were intelligent discussions about my symptoms, and what could be done.
I asked for reinstatement of Paxil, which was [the recommendation] in all of the papers, and it was printed by the FDA on the information insert in the Paxil package. So that was not a secret, either. But they refused to do that, and they insisted that I was relapsing—despite all of this evidence. So I was left without any medical assistance at all. I went from doctor to doctor, asking them for help, and everybody told me I’d relapsed, even though I had these weird symptoms. I had brain zaps for seven months, I couldn’t sleep, I had these overwhelming surges of anxiety—which I had never felt before in my life. I was intolerant to heat. I was having these temperature surges—and a lot of disorientation.
Through this all I was very, very focused on trying to find medical help. But I couldn’t find medical help. I talked to dozens of psychiatrists. Nobody could help. Nobody had any idea what was going on with me. And again, I was saying, “There are these papers.” I was telling them about it—and they just completely brushed that off.
Biancolli: You were more knowledgeable than they were.
Framer: At that point. And that was very strange to me—because I was completely new to this. My Paxil had been prescribed to me by my internist, because I was having what I thought was work stress at the time, and it was really a problem for me. It was during the dot-com crash. I had never thought of myself as a psychiatric patient.
I found a site called PaxilProgress [now defunct.] This was about in 2005. And at first I thought, “Well, I’m not going to take advice from people on the web—I mean, this is, like, rando advice from who-knows-who on the web. That’s not what I want to do for my mental care.” It took me a while to realize that that was the only place I was going to get any, you know, intelligent feedback. So I ended up joining PaxilProgress.org, and I think I was a member there for about five years. I started my own site in 2011.
Biancolli: At what point did you realize: “Wait. Maybe this isn’t a relapse. Maybe this is withdrawal.” And at what point did you have to take it into your own hands?
Framer: I realized immediately it wasn’t a relapse. The symptoms were so bizarre. There was no way that somebody could say that’s a relapse when you’re having brain zaps, and these bizarre electrical surges throughout your body. I mean it’s absurd that this is presumed to be relapse. You know doctors must not be listening to what their patients are telling them.
Biancolli: Why aren’t they listening? And to back up a little bit, brain zaps: Those are those involuntary, seizure-like things that attack you out of the blue, right? How would you describe a brain zap for someone who’s never had one?
Framer: People feel them in different ways, but I’ll tell you how I feel them. I felt it as a little electrical zap, a little bzzzzz-zzzzt inside my brain. And it generally occurred when I moved my eyes, but it didn’t seem to be associated with moving them in one direction or the other. But people feel them in different ways. I mean, some people feel them in the front part of their heads, and it doesn’t have anything to do with eye movement.
And then there’s an associated phenomenon where people will feel electrical sensations in their bodies. They’ll feel them in their arms, or in their backs, or legs, or wherever. So the biochemistry of the body’s electrical system is definitely involved.
Biancolli: Right, and you talk about that a lot, that there is a difference between acute withdrawal and long-term withdrawal. Can you address that—and the difference physiologically? What do we know about what’s going on?
Framer: First of all, all psychotropics—a prescribed psychotropic, a psychotropic that’s not prescribed, street drugs—if you take [a psychotropic] regularly, your nervous system will adapt to it. And for many drugs, this adaptation takes the form of downregulation of certain receptors. It differs from drug to drug what receptors are involved. But there must be a more universal nervous-system adaptation, because withdrawal syndromes from different drugs have so much in common.
The receptors “downregulate”—that means they’ve adapted. They’ve adjusted themselves to a high amount of a substance, so they turn off their intake valves to reduce, to compensate, to maintain a relatively homeostatic level of that substance.
So when the drug is removed, the little intake valves are still turned off—and the way the nervous system works, the way our bodies work, is that there’s a web of interconnected feedback mechanisms. One system tells the other system what’s going on, and then the other system makes an adaptation, and then a third system makes an adaptation—and they all feed back to each other.
Let’s say with antidepressants, the serotonin system is sending out signals to the rest of your body that doesn’t really represent the true level of the substance, because the sensors are desensitized. So the rest of your body goes, “What the heck?!” And everything gets a little haywire. It takes some time for that downregulation to correct itself—and my theory is that that is the period of acute withdrawal.
And then the sensors come back online, to some extent. For some people this adaptation is extremely slow, and that contributes to a very prolonged post-acute withdrawal period. But that period of acute withdrawal is generally over, [for] all psychotropics, in some number of weeks. Like one to nine weeks.
After discontinuation, withdrawal syndrome from antidepressants has been assumed to last only a couple of weeks. That’s been the classic understanding of doctors: That withdrawal symptoms are very trivial and only last a few weeks—and then you’re done with them. And then anything that persists after a few weeks must be relapse. And that means anything.
Biancolli: No matter how unusual, and how strange it feels to you, and how outrageous.
Framer: Right, even if it’s brain zaps and nausea and insomnia. Anything after that is considered to be a relapse. So my belief is that for 30-odd years—maybe even going back to the TCAs [tricyclics], maybe 50 years or 60 years—psychiatry has been mistaking acute withdrawal for all of withdrawal. And they’ve been disregarding the post-acute withdrawal syndrome.
So there’s this period of readaptation that lasts some number of weeks, or a couple of months, and then people feel a little bit different. I mean, they still feel terrible, and they still might have quite severe symptoms, but it changes. It becomes a little bit more predictable. And that’s the post-acute syndrome, and in my belief, that arises from the more extensive adaptation of the nervous system in the rest of the body to that drug over time—and it just takes a really long time for all of those body systems to get straightened out again. I mean, they are knocked for a loop.
Biancolli: You’re talking about the autonomic nervous system, right, and how it’s different in everybody.
Framer: A lot the symptoms seem to be autonomic. And so a lot of the symptoms have much in common with dysautonomia [dysfunction of the systems controlling involuntary bodily functions], which in neurology can arise out of unknown circumstances and fluctuates a great deal, and comes and goes. The autonomic system dysregulation is a mystery across medicine, but it can be observed in all psychotropic withdrawal.
I hope that this makes sense to people, because I’m not an expert in this area, and I’d really like an expert to come in and take a really good look at what’s going on in acute withdrawal versus post-acute withdrawal.
Biancolli: Your website, SurvivingAntidepressants.org, has 6,000 case histories. It’s got more than 60 topics specific to tapering. For somebody who is going through something similar: What can they do? How do they get involved? What happens when somebody is looking for help on withdrawal protocols?
Framer: From our experience, we believe that the severity of withdrawal syndrome is related to the rate of tapering—and this makes sense. If you read the literature, it makes sense that once the nervous system is adapted to a psychotropic, a very gradual decrease of that psychotropic will better enable adaptation without causing a tremendous disruption to the entire nervous system.
So we emphasize the importance of tapering to avoid withdrawal syndrome. And if somebody has been taking—let’s say—an antidepressant like Cymbalta for some number of years and they want to go off the drug, before they do anything, what they should do is read up on the drug on drugs.com so they understand what the FDA has published about that drug. They should understand the side effects of the drug, and then they should consider tapering.
Cymbalta has its own withdrawal issues. It appears to be quite difficult to go off. On my website we have a topic on tapering Cymbalta, and it will explain how you can taper by opening a capsule and counting out beads. Now, that’s the only way you can taper it. A compounding pharmacy could take the beads and put them into smaller capsules for you, but otherwise, you have to work with those capsules.
What we want people to do is to start off with gradual tapering instead of making those big decreases that their doctors recommend—because that generates withdrawal syndrome.
Biancolli: A few minutes ago you said you’re not an expert. But you are an expert—you just happen to be a lay expert. You are one of the most knowledgeable people in the world on this topic, and you’ve created this website that has been a godsend for a lot of people. In the past you’ve referred to your own experience with withdrawal as a “psychiatric hell”—and a lot of people going through it seek out this kind of peer support that you’re describing. The question is: Why is it that psychiatrists don’t know more, and don’t listen more, to patients? Why does it have to be lay people like you who are tackling this?
Framer: That’s a question that as far back as I can remember patients have been asking each other. “Why doesn’t my doctor understand this?” You know, it’s in the literature! There are hundreds of papers about antidepressant withdrawal. Most clinicians, most practitioners—and certainly not your GP—don’t read those papers. Still, in every form of guideline there is a line somewhere that says, “Tapering off should be gradual.” The thing is that “gradual” is never defined, so they’re a bit in the dark about this.
The only reason that I’m an expert is because it’s like the dark ages out there in the field, as far as tapering and withdrawal is concerned. I would like to say, very humbly, the only reason that I’m an expert is because there’s virtually no competition—and doctors really should be doing this. Doctors really should be the ones who are knowledgeable about this, and not me!
That’s pretty awful for people to realize. Every single person who’s taking a psychiatric drug for any length of time is at risk for withdrawal syndrome.
Biancolli: Everybody going on has to be careful going off. That’s basically it. That’s the bottom line.
Adele Framer: Yes. Anyone going on the drug should know going in that they might have a terrible time going off. And [according to] a recent paper by [James] Davies and [John] Read, and also the other literature on withdrawal syndrome, it really appears that the incidence of withdrawal syndrome is upwards of 40 percent. Now, that’s not a minor problem.
That is the truth about withdrawal syndrome: It’s like a 50-50 chance that you’re going to have a problem. Because it’s a 50-50 chance, you’ll also see people on the web saying, “I didn’t have any problem at all quitting my drug. I went off cold turkey.” But if you’re in the unlucky half, you’re gonna be really unlucky.
But to get back to your question about why doctors don’t know: It would be great if somebody could bring together a symposium and ask them why they don’t know.
Biancolli: I’m wondering: Is it reflective of this kind of larger irony that medicine isn’t always about science?
Adele Framer: I’m glad you brought that up, Amy. See, antidepressants are really the model drug for psychiatry. Because when the new generation of antidepressants were introduced—the SSRIs, SNRIs and the ones that have come on since then—they did have less initial adverse effects compared to the TCAs and the MAOIs, which were the tools that psychiatrists were working with prior to that. And they were really crappy tools, and the psychiatrists knew that. As a result, there were relatively few people taking TCAs and MAOIs. But the SSRIs made it possible to mass-market antidepressants.
The pharmaceutical companies really shaped a culture around this. The hard work and millions of dollars the pharmaceutical industry put into popularizing antidepressants for 20 years has paid off tremendously in that it truly shaped the culture of psychiatric treatment. There’s a tremendous mythology about antidepressants—and one of [the myths] is that they are extremely safe and have very little in the way of adverse effects. So the expectation is that an adverse effect is extremely rare.
The issue, the problem with treatment in psychiatry, is that an adverse effect often looks like a psychiatric symptom. For instance, if somebody starts taking Prozac, and then finds they can’t sleep—which is very common, actually—their not being able to sleep is held to be a symptom of depression. Don’t ask me why this logic makes sense, because I can’t tell you why. It’s just the way they think. So not being able to sleep is held to be a symptom of depression, which means that possibly that the dosage of Prozac might be raised, or a benzodiazepine added, or some other kind of sleep drug [prescribed]—which brings in other dependency issues, because those drugs are technically addictive and they will, like antidepressants, incur dependency after a while.
Biancolli: So it’s a domino effect leading to cocktails, which incur their own issues.
Adele Framer: Well, yeah, that’s been a tradition for 20 years. So being able to prescribe those cocktails—mixing and matching, making up something that’s really tasty and crushes all the symptoms—is held to be part of the art of psychiatry. And the practitioners really want to hold onto that.
Amy Biancolli: Now, you used the word “mythology,” which popped out at me, because that was one of my questions—about the various myths that you tackle. And what strikes me is that you’re talking about the culture and, really, a larger narrative that the wider culture accepts, too. When you look at SurvivingAntidepressants.org and you read people’s stories, they’re telling a very different narrative. And I’m wondering if you can speak a little bit to the power of sharing stories in trying to change the narrative. Do you think it can change the conversation?
Framer: When people read other people’s stories, they realize that they’re not the only person that’s experiencing that problem. There are 6,000 relatively complete case histories [on SurvivingAntidepressants.org]. You realize it’s all the same story. It’s one story. And each person who experiences it is so surprised that it happened to them—people go through a period of absolute disbelief. They realize that they’ve been trusting their doctors to have a certain amount of knowledge, and their doctors don’t actually have that knowledge.
And you know, this is heartbreaking. I went through this, and I felt that the world had fallen out from underneath me. There wasn’t any medical safety net. So the sociological phenomenon exists, and has not yet filtered into medicine. Medicine has its own ways of gathering information, and in psychiatry, for some reason, they keep asking each other what the truth is instead of asking their patients. The patient voice is not very well recognized in psychiatry at all.
What I would like to see is that patients talk more directly to their doctors—and be more assertive about holding their feet to the fire about adverse effects of the psychiatric drugs that they are so readily prescribing, and the issues having to do with tapering off the drugs. Anybody who gets a psychiatric drug prescription should be asking their doctor, “When and how am I going to be able to go off this drug?” And if the doctor goes, “Oh, don’t worry, we’ll get to that when we come to it,” the patient has to ask again. And to speak to a doctor, what’s important is that you maintain an even tone, and be insistent, and be reasonable. Do not raise your voice. Don’t get angry. Don’t cry. Don’t show any emotion—because if you show emotion, the doctor will think that you’re mentally unbalanced.
So it’s important to be assertive in a very determined fashion, but be firm and polite at the same time. Still, don’t let them get away with weaseling out of these hard questions. If you start taking an antidepressant, and then you find you can’t sleep, or you’re more nervous than when you first started, or you’re throwing up all the time—whatever your side effects are, if that occurred after you started taking the antidepressant, it’s probably due to the drug. And don’t let them tell you that it’s something else. They have to address the problem of the drug having an adverse effect. If they can’t address the problem, then you can’t trust their advice about the drug.
The whole culture of medicine is about to change because of this, by the way. The patient participation is rising as an important movement throughout medicine.
Biancolli: Something you just said jumped out at me. You were basically advising patients, yes, to speak up, to advocate for themselves, to hold their doctors accountable, but to be a little careful. Because if they get a little too emotional, the doctors will frame it in terms of their psychiatric model. And they’ll say, “This is yet more evidence of diagnosis ABC.” Does this all speak to the larger issue of the stigma, and that even the doctors are at the whim of stigmas surrounding all of these issues? Is that part of it?
Framer: In my opinion, where stigma about so-called mental illness radiates the most intensely is in the medical profession. Doctors are well-intentioned, a lot of them are very nice people, but their culture is such that a lot of them consider patients to be “less-than” and a patient with a psychiatric diagnosis is even more “less-than.” Nowhere is this more true than in psychiatry—and that’s really kind of a disgrace to the profession. Once you have a psychiatric diagnosis, even if it’s been incorrectly applied, if a doctor sees that in your chart, a lot of what you say is likely to be discounted. Medicine itself disenfranchises people with those types of diagnoses. And that’s on medicine.
Earlier you were talking about how the mythology has been embedded in the way everybody thinks about psychiatric disorders, or mental health, or whatever it is that you want to call it. And it’s true that those assumptions have been embedded in public-health programs and funded by billions of dollars in government funds. This is sort of absurd, but every year, you’ll read about how enormous numbers of people are suffering from mental illness—and that’s because the public-health machinery is justifying its funding. Because it wants to provide services to more and more people, and those services often are drugs. I mean, that’s it. That’s the cheapest, fastest way of providing so-called treatment.
It’s almost becoming a class distinction, that vast numbers of people have these psychiatric labels, or are candidates for these psychiatric labels. There’s some kind of stratification going on. And that’s a stigma problem that’s embedded in the whole culture of mental health.
Biancolli: One final question: What gives you hope?
Adele Framer: Recently there have been some developments in the UK that were spearheaded by the patient movement and have gotten some traction in the British government, some recognition in British psychiatry, [which] may influence the national guidelines and also the European guidelines for the treatment of depression.
And now there are so many people who’ve been on and off psychiatric drugs that there’s actually a population of doctors who’ve experienced withdrawal syndrome—and [they] get it. They get that it’s a problem. Some of them have gotten very active, and some of them are publishing. Mark Horowitz is publishing, and David Taylor is. That makes headway in the journals. Then the academics start to discuss the papers in the journals, and if the academics start to discuss the papers in the journals, then eventually it filters down to your local prescriber. But that takes a long time—and as I said, those prescribers don’t read the journals, and they might not even pay any attention to academic discussions.
So I think that the patients need to bring [this information] to them.
Biancolli: Thank you, Adele Framer, for all of this. Your website, once again, is SurvivingAntidepressants.org.
MIA Reports are supported, in part, by a grant from the Open Society Foundations