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The Lonely Hell of Quitting Antidepressants

Why do doctors seem quicker to prescribe you another pill than talk about the mental and physical symptoms of withdrawing from SSRIs?

It’s been 18 months since Chris Clarke, a 40-year-old TV and film lighting director in London, began progressively lowering the dose of Zoloft he had taken every day for 15 years. He remembers the exact date that he actually stopped taking it altogether: Nov. 26, 2018.

It was a bit of a triumphant day, considering all those months of misery he forged through while trying to wean himself off the antidepressant. The problem is that, every day, the ghost of the drug reappears. “Things are easier than they were in the first months, but one of the major symptoms I still feel is this sensation that someone’s squeezing your eyeballs from behind,” Clarke tells me, bringing his hands to the temples of his lean, close-shaved head. “And if I try to move my eyes instead of moving my whole head, I get these little zaps in my brain,” he continues. “I don’t get them if I move my head to look around. I feel like a fucking pigeon. The longer the day gets, the worse it gets.”    

Search “brain zaps” on the internet and you’ll find a long string of Reddit posts, forum questions and medical papers all trying to explain why and how these debilitating shocks appear. Yet few who get prescribed an antidepressant seem prepared for the possibility that they could suffer from the zaps, or other side effects, after trying to get off of it. All-day lethargy, spurts of irrational rage, anxiety, overwhelming sadness, an out-of-body sensation and even suicidal ideation can all derail someone who’s either transitioning to a new antidepressant, or more commonly, trying to quit them.

I first met Clarke while writing about men with disabilities who are hardcore flight-simulation players, and he told me how a mysterious diagnosis of chronic fatigue syndrome in 2004 destroyed much of his social life because of the pain and exhaustion he felt every day. He grappled with depression in the aftermath of the diagnosis, and soon got a prescription to help stabilize his mood. The most common antidepressants fall into two categories, SSRI and SNRI, which both manipulate the brain’s chemical messages, notably the “happiness” neurotransmitter serotonin. Clarke tried three different kinds over the course of 15 years. “Eighteen months ago, I figured it was maybe time for me to try not to take it,” he says. “That’s when all hell broke loose.”

After consulting the physician who had put him on the medication, Clarke embarked on a plan for 50 percent reduction in dosage every few months, cutting down from 150 milligrams a day to the smallest chunk he could cut off the smallest available pill — 12.5 milligrams. Somehow, even going from that small amount to zero proved an exercise in agony. Clarke tried not to draw attention to his sudden bouts of crying while on set, or the fact that basic tasks overwhelmed him into a frozen, anxious state. He wondered if his physician had advice on how to manage the transition to zero. “He sort of laughed when I said that I was struggling even going from 25 milligrams. He told me, ‘Well, at that dose, it’s almost homeopathic, anyway,’” Clarke recalls. “It’s those kind of idiot comments that really don’t help at all.”  

For Clarke, figuring how to safely transition off his antidepressant last year was mostly a solitary task, supported by the observations from having tried, and failed, several times before. About one in nine Americans use antidepressants, according to 2011 to 2014 data from the Centers for Disease Control and Prevention, and nearly 25 million adults have used them for at least two years, representing a 60 percent bump since 2010, per the New York Times. Experts say a majority of these users will not experience “discontinuation syndrome,” more commonly described by users as withdrawal symptoms, and that the problems are “usually mild… and usually last for one or two weeks.”

In reality, people who try to quit their antidepressants can suffer for far longer. Surprisingly, there is little research on the long-term effects of antidepressant use, and some medical experts are now pushing to re-evaluate the common wisdom that withdrawal isn’t a problem worth discussing with patients. “It’s something that’s not really talked about, and part of that reason is that doctors are trained to skim over side effects and move on. Another reason is the way that these drugs are marketed. They’re marketed as relatively safe,” says Reef Karim, a psychiatrist in L.A. with extensive experience in holistic mental health care. “They’re marketed as non-abusable and they’re marketed as something you should be able to go on, and then if you need to, you can get off them or find another one.”

The reasons for wanting to quit an antidepressant are varied. In Clarke’s case, it was simply confronting the fact that he didn’t want to rely on a pill for the rest of his life. Others move on because of common side effects, including feeling “like a zombie,” their libido disappearing or mood swings. Karim notes that while those with clinical depression may benefit from a long-term antidepressant regimen, other patients with shorter-term issues are informed by doctors that they can stop using the drug when they choose to — only to find out that it’s not so simple. The difficulty of getting off an antidepressant leads many to feel like they’re reliant on daily doses, even if the drugs aren’t technically addictive in the way opiates or alcohol can be.

Mike, a 33-year-old data analyst in Richmond, Virginia, first tried antidepressants after a series of out-of-the-blue panic attacks that struck him over the course of a single week. He showed up at a walk-in clinic near his home, and was surprised to discover the general physician could write him a prescription for Lexapro, even without any formal psychiatric diagnosis. “I’ll be honest, I didn’t want to go on antidepressants because of the stigma. I’ve never been on any kind of medication,” Mike says. “But the thought of another panic attack wasn’t acceptable. I had to do something. Plus, the doctor told me it would be no problem to quit Lexapro.”

A month in, however, Mike was feeling worse than ever. He had extreme nausea, a constant ringing in his ears, depressive thoughts, and oddly, constant yawning. After struggling to get a timely appointment with his doctor, a frustrated Mike decided to consult his friend’s physician, who suggested transitioning to Paxil. “He did give a gentle warning that it could be hard to quit,” Mike recalls. “But by this point, I was at my breaking point. I told myself the second I started feeling really better, I’d get off it.”

Lo and behold, the Paxil worked. Mike felt more focused and less anxious about panic attacks, and even saw a therapist in order to figure out what might have triggered them in the first place. (“I apparently have OCD tendencies, and fixate on things, which can create the panic.”) After three months, he figured he should quit Paxil and get back to his normal routine. Day one off the pill went off without a hitch.

Day two off the drugs, however, sent everything crumbling down. He could barely walk from his car into his office because of vertigo, a common withdrawal symptom. He felt a painful pressure against the back of his eyes, like Clarke. Most frightening of all was the cold, random wondering about suicide. On day three, Mike experienced an out-of-body sensation as he walked up the stairs, into the kitchen, and put a butcher knife in his hand. “I had only taken antidepressants for three months, so I thought quitting cold turkey wouldn’t be a huge deal. But those two weeks following that decision were extremely, extremely hard for me,” he says. “Every second it feels like you’re going to die. I had to go back to a quarter-dose and learn how to taper down.”

May 15, 2018 is the day that Mike quit Paxil for good, and the following four months brought more “bad trips” where he felt disassociated from his body and like he was floating through a bizarre parallel universe. Thankfully, the only lingering symptom as of late is random spurts of vertigo. Mike is grateful to feel like his old self again, but is shaken by how badly things went. “I did try to get advice from my doctor about what was going on, but there’s no universal understanding of how to manage this. Even tapering is unpredictable,” he says. “It’s hell, man, to not know what you’re getting yourself into, and you’re left with more questions than answers when trying to quit. It’s the worst position you can be in.”

Suicidal ideation, aggression and violent thinking are the most severe and dangerous side effects of antidepressant use, and developing research suggests that SSRI use can actively raise the chances of violent behavior among patients. The fix, in theory, is consistent monitoring and communication with one’s doctor in order to quash dangerous symptoms. But real-life patients like Clarke and Mike say that asking questions has either left them feeling dismissed, stupid or like they’re wasting their doctors’ time for an answer that won’t address their specific needs. Many are pushed to internet forums and medical journals to figure out, for themselves, how a successful withdrawal from antidepressants is supposed to work. In turn, trial and painful error becomes a fact of life.

Then there’s the fact that more and more antidepressants are being prescribed without a psychiatric diagnosis, which has been linked to an overall increase in usage in the U.S. To be clear, it’s hard to parse whether the number is growing because Americans are embracing mental-health treatment versus an overprescription problem. But experts say that the phenomenon of primary care physicians doling out antidepressants for non-psychiatric conditions has consequences for how informed and responsible a patient can be while taking the drug and eventually quitting it.

Cheyanne, a 26-year-old in Reno, Nevada, admits she’s dealt with depression and OCD-like instances of spiraling, fixated thinking for much of her life. In college, she struggled through an eating disorder and moments of self-harm, but believed she could figure it out alone. Then, two years ago, Cheyanne hit rock bottom. She was swallowed up by suicidal thoughts and on the verge of derailing her successful career as a freelance graphic designer.

“So my logic was that, well, it’s hard to make an appointment with a therapist and it’s going to take a while to develop a relationship with them and get the help I need, anyway. Not to mention that I was making too much money to have a good, subsidized insurance plan. Each therapy session was looking like $150,” Cheyanne says. “I saw an antidepressant as a Band-Aid but knew that an SSRI could kick in around three or four weeks.”

Instead of a mental health care provider, she found a general physician who scribbled off a 20-milligram prescription for Prozac and told her not to fuss about potential side effects. And for a while, the drug worked wonders: “I never felt so good in my life. I didn’t have pestering negative, violent thoughts and I felt free.” After two years of use, though, the drug’s highs had worn off. Cheyanne was left with a daily numbness that seemed to sap the color out of her weeks. Even worse, her eating disorder made a return, perhaps because her zombie-like demeanor made it easy to justify skipping meals for days at a time. Frustrated and feeling impulsive, Cheyanne quit Prozac cold turkey in November, believing that she could ride out the withdrawal for the 4- to 6-week comedown period.

It took just two days for Cheyanne to collapse into an uncontrolled rage, directed inward at herself. The urge to self-harm reached a fever pitch, in a way she had never experienced before. Vertigo derailed random walks. And those brain zaps kicked in — even today, three months after quitting Prozac, she feels a slash of pain through her skull if she so much as turns her head too quickly. While Cheyanne is grateful for the improvement during her two years of Prozac use, she considers herself “basically worse off” than before taking the drug. She’s also unsure of whether those painful zaps will fade away anytime soon.

“Because of my insurance situation, I’ve fallen through the cracks. I just got accepted into a very good eating disorder treatment program, which was extremely validating for me, considering how long I’ve struggled with it. But I found out it’s $90,000 for 45 days of treatment,” Cheyanne says, her voice quivering. “I also did see a therapist for a while, but she was just telling me to focus on meditation, and I dunno, drinking juice or something. I don’t know what comes next.”

Cheyanne, Mike, Clarke and others I spoke to for this story all expressed that support was hard to come by. Most had to rely on loved ones, not medical professionals, to get through their discontinuation symptoms. Clarke’s girlfriend, Hannah, says she’s noticed a “huge difference” now that he’s not worried about taking a pill every day. “Whether he knew it or not, I think he sort of planned his life around taking the drug and a reliance on it,” she says. On the flip side, she’s frustrated by the way Clarke has been treated by his physicians, whom she says showed little interest in helping him achieve his mission of quitting SSRIs. “When he actually sought medical help after quitting, rather than praising him for accomplishing his goal, they just wanted to get him back on another drug,” she says. “Someone is vulnerable and looking for help, having done so much hard work to get off a medication that they didn’t want, and they just want to throw another antidepressant in the mix, with all the side effects. So it seems like there isn’t support for people who want to come off it.”

Karim notes that it is an established medical practice to use a secondary “long-acting” antidepressant, which tend to have less severe side effects, as a stabilizing force in treating discontinuation syndrome from certain short-acting drugs. Regardless, he still sees a broader issue in the ways doctors talk to their patients about antidepressants, and suggests that the hazy relationship between doctors and pharmaceutical companies, who spend huge cash each year lobbying for the proliferation of drugs like SSRI/SNRIs, presents problematic implications.

Then again, patients themselves are also responsible for pushing quick fixes during an evaluation, he adds. People often want instant relief for their suffering, and sometimes don’t have as much interest in holistic lifestyle changes like diet and exercise, which multiple studies show can have a similar impact as an antidepressant regimen. “There are all sorts of things you can do to regulate your mental health, but you don’t see commercials for meditation and exercise. You see commercials for antidepressants,” he says.

Everyone I spoke to made sure to note that antidepressants should not be demonized. Mostly, they spoke of the loneliness of suffering discontinuation symptoms without feeling heard. While a 2017 report notes that “around 20 percent” of antidepressant users have withdrawal issues, other experts note that the figure may be significantly underreported. In his 15 years on an antidepressant, Clarke observed that his doctors seemed more eager to give him a new pill to quell the symptoms than to seriously guide him through the challenge of quitting.

He wonders how many others are out there, left with the sinking feeling that quitting just isn’t worth it. “It’s not the giving of these drugs that bothers me. I’m grateful for it,” Clarke concludes. “It’s the lack of help to get off them. I’m not mentally great right now, it’s not like life is perfect off the pills. But it’s something I had to do on my own terms.”