One day in the middle of January, I abruptly stopped taking Cymbalta. The drug was supposed to help me with my depression, and I think on a neurochemical level it did. Alas, the side effects made me less happy, which conflicted with the core purpose of the pill. My brain was sluggish, my body heavy, my ability to feel pleasure dulled across the board. I was supposed to see my doctor the following week to talk about tapering off the drug, but having made the decision, I just couldn’t wait.
It turns out that I’m far from alone in struggling; more concerning, the medical profession as a whole is still trying to figure out how to help people like me. There’s just not much financial incentive in researching how to get people off of drugs.
When I told my wife I had gone off my medication cold turkey, she pointed out that I was being reckless with my health. She was, of course, correct. I started taking Cymbalta again. I felt ashamed of having been so rash, but was also completely sure that I wanted this drug out of my body. Immediately. Next week, supported by three different medical professionals (a general practitioner, a therapist, and a psychiatrist), I began a slow tapering-off of Cymbalta (the drug for my depression) while maintaining the same dosage of Wellbutrin (the drug for my anxiety).
The next two months were absolute hell. Not just on me, of course, but also on the people around me. I either couldn’t sleep or I had to sleep all the time. I felt full after just a few bites of any food, stripped of appetite, but at other times had trouble convincing myself to stop eating as I binged. Like many people, my depression manifests first as anger and then as self-loathing for the anger. Wellbutrin, my psychiatrist explains, is supposed to help me feel more joy, but can also make people twitchy. The Cymbalta had helped smooth out the emotional peaks and valleys. Without it, I oscillated quickly from anger to joy and back to anger, becoming erratic and unpredictable (and no fun to be around). I turned manic one night and found myself pondering going for a walk or run around the neighborhood at midnight. It was February in Minnesota, and midnight perambulation is strictly discouraged in that season. Instead of a run, I poured myself into the guest bed and kept myself safe.
Worst of all were the “brain zaps.” Imagine a sound like a fly stuck between two window panes. Imagine a vibration like a cell phone in your pocket. Now put those together, except the sound and sensation were located in the back of my skull. When I began to describe these symptoms, I was comforted to find other mentally disabled friends who had experienced the same, and even peer-reviewed literature on the phenomenon. I felt comforted to learn that this wasn’t all just some bizarre hallucination, but the symptoms persisted, off and on, for weeks, especially at night. I still get them sometimes.
Being depressed was terrible, but also in some ways easy. It can be easy to dwell in a state of joylessness with little attachment to life. Going off Cymbalta was much harder.
Before you get worried about me, I’m relieved to report that my new medication regimen, which includes Wellbutrin plus a drug called Lamotrigine, seems to be working well, without the side effects of my previous combination. I feel close to finding my balance again. (Please also note that I am not a doctor, and no one should be taking medical advice from me. Especially because I keep making terrible, irrational decisions.)
Rachel Aviv recently published a long piece in The New Yorker about the challenges of “de-prescribing” anti-depressants. Aviv’s story focuses on the life-threatening withdrawal symptoms experienced by a woman named Laura as a way to illustrate how many people have serious difficulty getting off these drugs—and how little we still know about how the drugs work. Aviv writes that psychiatric drugs come to market after just 12-week trials on average, and that the industry rarely invests much time in studying potential problems with withdrawal.
“Antidepressants are now taken by roughly one in eight adults and adolescents in the U.S., and a quarter of them have been doing so for more than 10 years,” Aviv writes. “Industry money often determines the questions posed by pharmacological studies, and research about stopping drugs has never been a priority.” Medical researchers are just now coming to recognize the need to develop standardized, and slower, withdrawal regimens. “De-prescribing” for antidepressants seems to be a field in its relative infancy.
Researchers are trying to catch up, but simply collecting the data can be difficult. A recent study in the Journal of Biomedical Informatics argues that patients are just as good at identifying and reporting adverse symptoms of withdrawal as medical professionals are, but “patients often do not report … due to negative attitudes toward clinical providers and drug makers, not recognizing the availability of these systems, or due to the severity of their illness.”
Instead, patients like me go on the Internet, sharing our symptoms and asking for guidance. I discovered the term for “brain zaps” by tweeting. The authors of the new study collected data on symptoms by aggregating anonymous reports from askapatient.com, then built a large, publicly available database called “Pharmacovigilance in Psychiatry.” It’s a clever approach, but shouldn’t we have begun seeking this information before the drugs were prescribed so broadly?
I love my brain drugs. Right now, even in the midst of grief (my mom died) and general unease about the state of the world, I feel better than I’ve felt in years. I’m more grounded. I’m able to feel joy when joyous things happen. But I was not warned about withdrawal when I began my first drug regimen almost a year ago. And even with excellent medical care—which not everyone has, especially for mental-health needs—getting off Cymbalta was hell.
Ultimately, of course, this is a story about Big Pharma and for-profit medicine. SSRIs and SNRIs do good work helping people with depression. But why would the industry care about helping people to stop taking drugs? These companies make money when people use their products. But for the sake of public health, we need basic research, publicly funded, that engages with the entire cycle of all drugs. Because if you think we’ve got a problem with de-prescribing antidepressants, wait until you learn about how the pharmaceutical industry has behaved with opioids.
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