I was prescribed Cymbalta at age 17. Years later, when I tried to get off the drug, the withdrawal I experienced was excruciating.
Illustration by the author
I hated those electric shock games kids had growing up, the ones where everyone would huddle around a little sphere and place their hands on a button that shocks one person at random. The only upside to those games was the fact you came out unscathed most of the time. There was more than a 75 percent chance you would sit there in anticipation and fear, only to watch your friends jump up and down, howling in pain.
When I tried to get off my antidepressants, the odds weren't so favorable. There were months on end of blinding electric pulses, often referred to as "brain zaps," odd shocks that accompanied sudden movements or just hit at random. They happened any time I turned my head. Everything drags in those moments: The world in front of you remains still for a second and then you feel sparks, hot little pinpricks flitting around.
That persistent sticky pain of electricity shooting up your neck and brain is one of the more unsettling feelings I've experienced. Combined with heart palpitations, an erratic appetite, an unreliable sleep cycle, and oscillating mood, it often felt as if getting off of Cymbalta would lead to something much more damaging than what prompted its initial use.
I decided to start taking an antidepressant when I was 17, after my best friend died on the last day of high school. He ditched class to skate and was pulled under the car he was skitching. I went to ask my doctor if she had any advice on handling the situation and she recommended I try Cymbalta at 60 mg.
I felt OK for a while; it definitely helped to quiet my mind for the first year or so. Then came the adverse effects. I never wanted to eat, never really felt up to sex, and gave up on most exercise and sports due to the brain zaps. I slept erratically or not at all. I was constantly drained; I perpetually felt as if I had just left a long movie and was stumbling out of a dark theater into the afternoon. It was stimuli overload without the stimuli, an unearned fatigue.
The first time I tried quitting Cymbalta, I couldn't make it a week without medication.
Cymbalta (Duloxetine) is a selective serotonin and norepinephrine reuptake inhibitor (SNRI), a class of drug often used to help with depression, anxiety, chronic pain, and fibromyalgia. The haziness I experienced was one of many possible side effects of Cymbalta. Others noted by the FDA include nausea, agitation, hallucinations, fever, fast heart rate, overactive reflexes, confusion, tremors, racing thoughts, and vomiting.
A couple years after I started taking Cymbalta, I started drinking a lot of coffee and doing blow. Not the most sensible move, but it helped with the haziness tremendously.
The headaches that year were insane. On Cymbalta, you aren't supposed to drink. Even one or two beers would leave me with a throbbing hangover. I was pairing my antidepressants with a gram of blow and seven or eight drinks, waking up unable to open my eyes, my head splitting apart. An entire year passed by where I was getting wrecked on a nightly basis in a misguided attempt to escape the perpetual mental haze.
This wasn't sustainable. After a while I decided to clean my act up, cut down on drinking, and get off the meds. There was a problem, however: Cymbalta is only prescribed in three doses: 20 mg, 30 mg, and 60 mg. 20 mg is still a significant dosage, making it nearly impossible to taper off the drug. Going cold turkey struck me as the most sensible option.
I had some experience with how Cymbalta withdrawals felt, but I wasn't prepared for how bad things would get when I completely stopped taking the drug. There's even a name for what I was going through: Cymbalta Discontinuation Syndrome was described in a 2009 FDA report that said quitting the drug could result in "injury, distress, and life management impacts."
The FDA report brings up numerous claims that Eli-Lilly, the company that manufacters Cymbalta, downplayed the effects of withdrawal. The syndrome is "more severe and much more widespread than acknowledged by Eli-Lilly," according to claims cited by the report, and "sales representatives and marketing materials do not adequately inform physicians about the likelihood and severity of discontinuation syndrome." Most troubling of all is the claim that "Eli-Lilly has not developed a clinically-proven protocol for safely discontinuing Cymbalta."
These claims have generated a flurry of lawsuits. Claudia Herrera recently took Eli-Lilly to court in California, alleging the company had misrepresented Cymbalta's withdrawal symptoms. Herrera's lawyer described months of agonizing brain zaps, anxiety, spasms, and suicidal ideations that were deemed "serious and life-threatening." The psychiatrist who testified for Eli-Lilly informed jurors that there was no evidence in medical literature of withdrawal symptoms lasting for months. He went on to make the point that Herrera's symptoms might have simply been a manifestation of her underlying depression and anxiety disorders.
Early clinical trials sponsored by Lilly, however, found that among users of the drug, nearly 54 percent "had not resolved (withdrawal symptoms) after up to two weeks. What happened to these patients after two weeks is unknown."Herrera's lawyers also cited a 2005 study by the Journal of Affective DisordersJournal of Affective Disorders on Cymbalta withdrawals. The study revealed that more than 44 percent of patients who abruptly discontinue Cymbalta experience serious withdrawal symptoms. The warning label on Cymbalta states that such symptoms occur only at a rate of 1 percent or more, a discrepancy that representatives from Eli-Lilly opted not to address when I approached them for comment.
Claudia Herrera lost her case against Eli-Lilly; the drug company was not found liable for her withdrawal symptoms, in a decision that may give Eli-Lilly leverage over the 5,000 pending lawsuits over Cymbalta. Herrera filed an appeal on the verdict earlier this month.
Legal issues are nothing new to the drug manufacturer. In 2009, Eli-Lilly was ordered to pay one of the largest criminal fines in US history: $1.415 billion over illegal marketing practices regarding the antipsychotic medication Zyprexa. Hundreds of internal emails were released, revealing Lilly's efforts to suppress dangerous side effects and promote unapproved usage.
The first time I tried quitting Cymbalta, I couldn't make it a week without medication. It took another couple of years, a move to New York, and a renewed commitment to try again before I was able to kick my dependency.
Cymbalta's sales hit nearly $5 billion in 2012, $4 billion of that in the US alone. Before their patent expired in 2014, they were able to block a generic from being made and charge a retail price in 2013 of $538 per month. I often ended up paying about $200 a month with insurance (which, considering I can barely afford living in New York as is, was completely unsustainable).
I decided to see a new doctor about getting off the medication. He told me how hard it is to get off Cymbalta, and said he was reluctant to recommend the drug to his patients. In order to taper down, he told me, I would have to open the pills and take out the little balls they contain, periodically removing more little balls until I was off the stuff completely.
Thus commenced one of the hardest winters I've been through. There were months of heart palpitations, muscle spasms, and debilitating brain zaps. Tapering off proved difficult and tedious, and the physical withdrawals weren't much better than my first attempt.
The brain zaps and heart palpitations lingered the longest, probably six months after getting off Cymbalta.
It became hard not to doubt myself when everything got under my skin. Mundane daily tasks completely unraveled me. All of my anxious traits took over. I couldn't decide what to eat, what to wear, what to do with my time when I wasn't working. I could never sleep and when I did, I would wake up erratically, sweating and panicked. I lost weight and considered moving back home.
But as bad as these withdrawals became, I couldn't bring myself to get back on the medicine. I could still remember how distant I felt taking Cymbalta, how removed I was from the world. There was one day that stood out, in late August, or maybe early September, before I moved to New York. The weather was no longer insufferably hot and it was early evening, just before sunset. I was in a particularly bad mood so I opted to bike down to the Platte River that runs through Denver. I sat on one of the blocks that juts out over the water. Everything was cast in early-evening glow and you could see lower downtown stretching out over the carefully-manicured park, people walking their dogs, kids playing in the water, all the common scenes of summer bliss.
I remember sitting there and watching this perfect scenery and waiting for something to click, waiting for my surroundings to affect me. They never did. I sat there watching this idyllic scene and I felt tired and trapped. My panic began to churn. It became clear that I had to get off Cymbalta because nothing could get through its haze. I made my way home and realized I no longer cared to live like this; by the time I came down from the panic I was sitting on the floor, scared shitless and completely drained. This haze was a constant during my time on Cymbalta; nothing could ever get through.
I've been off any sort of medication for a couple of years and I'm genuinely happy. I don't like thinking about the amount of time I spent on the medicine, how many years I spent under the influence of something that numbed my outlook on the world, softened the borders of my personality. Not only was the drug rather ineffective for me, it felt as if it was handed to me without warning, without indication of what it would take to quit. One in ten Americans are on antidepressants, and medication can be a viable, beneficial, and sometimes life-saving option for those suffering from clinical depression; it's important, though, that patients are armed with a full understanding of potential side-effects, both while they're on a drug and if they should choose to come off it.
I still have low points, and so does everyone else. Anxiety and depression are incredibly common. It doesn't mean you throw medication at the problem without thoroughly assessing alternatives. I paint, I write, I run. I have many projects that keep me occupied and many people I love to keep me happy. As excruciating as it was getting off Cymbalta, I never would have realized how little I needed the medicine otherwise.