By JAIME LOWE
WHEN I was 16, I was admitted to U.C.L.A.’s neuropsychiatric institute. I’d been suffering from increasing paranoia (I thought war was imminent; I thought I would be called into battle) and lack of sleep (I paced our staircase into the early hours of morning). Most profoundly, I thought my parents were actually secret agents, wearing masks, sent to monitor my behavior.
My hallucinations encompassed a wide range of cultural references — Michael Jackson, the Muppets, the Night Stalker, Bob from “Twin Peaks” and the clown from “It.” My parents told the doctors at U.C.L.A. that my behavior had been erratic for two months — I was obsessing over odd things, I wasn’t eating and I was convinced that the end of the world was on its way. In short, I was manic. I was hospitalized for almost a month, and I left the institute with a diagnosis of bipolar disorder.
My cure came in the form of three pink pills: 900 milligrams of lithium. It worked when I was on it. But a few years ago, my general practitioner had discovered heart-attack-level blood pressure and high creatinine measures — side effects that I couldn’t feel but were serious enough to warrant a visit to the E.R. As a result of my taking lithium, my kidneys were breaking down — I basically had a 60-year-old’s kidneys in my 37-year-old body. I was given a choice: I could stay on the lithium and get a kidney transplant eventually, or I could switch medication and risk having mania return.
I chose to try a new medication.
No drug could ever be as cool as lithium, a mysterious element that was present during the Big Bang and lingers throughout the galaxy as primordial stardust. Lithium has a medicinal history that dates to the Greeks and Romans, yet no doctor or researcher knows exactly how or why it works. It just does. It’s on the periodic table of elements, unpatentable and therefore cheap. Depakote, a drug officially approved for bipolar patients in the United States in the mid-1990s, has none of this cachet, and yet it’s known to be as effective as lithium in bipolar cases like mine. So my psychiatrist prescribed it to replace my pink pills.
When I first made the switch, in the fall of 2015, I was resistant. Depakote pills were difficult to swallow, and taking them made me vomit. Almost instantly, I felt bloated all the time and gained seven pounds. I couldn’t stomach the food and drinks I’d been used to consuming without thought: lemons, hot sauce, kombucha, fried anything, cheese, even raw vegetables. I got so dehydrated that for long periods I couldn’t speak. I was increasing the Depakote while on a full dose of lithium — standard practice. My psychiatrist said that some of the intensity of my reactions could have been from taking both medications at the same time. He wasn’t sure, he said, because it’s different for every person.
The worst part of a new medication is not knowing — not knowing whether the symptoms are real, whether what you’re feeling is coming from the medication or from a thousand other life variables. I didn’t feel like myself — I was irrationally angry, disturbed by things I would normally find O.K. Week 1, I felt terrible. Week 2, worse. Week 3, same. Week 4, I wanted to murder Depakote. Week 5, I was barely able to keep it together. Week 6, I called it quits. This was so much worse than sacrificing a kidney, I thought.
I was still on lithium, but I was eager to try the next option. There were so many choices that it would be all right if my body rejected the first one. The world of psychopharmacology was ripe with possibility. At least, that’s what it always seems like in pharmaceutical ads — that a normal life of chasing a red balloon with my golden retriever on a lazy Sunday is only one pill away. That we all should be happy, could be happy, would be happy.
I tried Tegretol. For about two weeks, things were looking up. Until, that is, blood work showed that Tegretol was causing toxicity in my liver. A year had passed since I initially tried the Depakote, so my psychiatrist suggested I try it again. Warily, I agreed. This time the Depakote felt different. The side effects weren’t as bad. I wasn’t crying every day. I didn’t tear up at the mention of cheese. Maybe I was experiencing psychosomatic symptoms the first time.
Then I refilled my prescription and noticed that the pills were slightly different from the month before — blue and oval. The originals were larger and white and had a different stamp on them. Though both were generic, one was known as Depakote D.R. (for delayed release), the other as Depakote E.R. (for extended release). I asked my pharmacist if there was a difference and he said, no, they are the same chemical makeup. It turns out there are studies that claim that the two different forms of Depakote are interchangeable. Why any drug company would distinguish medications with the nearly interchangeable words “delayed” and “extended” was beyond me.
Within a day of taking the Depakote D.R., I was bloated again — angry, irritated, fat-feeling, hair-losing and sobbing. I was increasing the dose at the same time, so I assumed that my symptoms were just a reaction to the amount I was taking. I kept taking the D.R.; I kept sobbing. After a month, my general state got so extreme, I considered ditching Depakote again.
In October 2016, I refilled my prescription again. And within 24 hours, I felt better. This time the bottle said “Depakote E.R.” Two days later, I still had side effects, but they were mild by comparison. I wasn’t murderous and I didn’t feel as if there was an alien baby growing in my stomach. I realized that the first time I tried Depakote, in 2015, I had probably been given D.R. I was responding well to one form of Depakote but not to another, yet my pharmacist had sent me home assuring me they were interchangeable.
According to my body, they are not.
When I asked Dr. Richard Brown, a clinical psychiatrist and an early advocate of Depakote, why I would be given two different kinds of the drug interchangeably, he said that historically it has been the pharmaceutical companies themselves that educate doctors and pharmacists on new medications.
“What’s happened is that most psychiatrists have no clue that E.R. is better than D.R., and many prescribe generic D.R.,” he answered. “And because it’s been off-patent for several years there’s no economic incentive to educate doctors.” He mentioned that some patients don’t even get a psychiatric evaluation; medication is prescribed by a general practitioner. One study led by researchers at the Yale School of Medicine found that 58 percent of people who were prescribed a psychotropic medication within the study group of roughly five million had no psychiatric diagnosis.
Dr. Brown, addressing my situation in particular, told me that sometimes a pharmacy makes the mistake of assuming one Depakote is the same as another, and then there is also the problem of generics. This communication gap is potentially catastrophic — I might never have gotten the right Depakote, I might have stopped at Depakote D.R. Who knows how many others are on the wrong versions of medication, and suffering?
Medicating people with mental illness, and encouraging them to stay on their medication, is one of the most challenging aspects of managing the disease. “There should be a separate specialty board in certification in psychopharmacology,” Dr. Brown said, a process that isn’t in place at all right now for doctors.
I took the pills blindly and trusted a dysfunctional system.
Getting medications right for any disorder is considered a science, but my experience was more nebulous. E.R. was better for me; D.R. may be better for someone else. Medication education is barely a consideration in our health care system. I’m a well-informed patient with a very strong support system, and it still took me by surprise when the Depakote changed shape and then turned out to be hurting rather than helping.
Small shifts in disseminating information would make a big difference — psychiatrists, general practitioners and pharmacists could play a more active role in suggesting other options for the same type of medication, in being still more aware of individual responses and in educating themselves and their patients about the nuances of psychotropics.
If I had not realized that E.R. worked for me and D.R. didn’t, I might have given up on a new medication altogether and stuck with lithium. In that case, my name would be among the more than 100,000 people on the kidney transplant waiting list.
This article originally appeared in The New York Times