by Jaime Lowe
After Bolivia and Nevada, my spirit quest had more than piqued my curiosity. I saw lithium’s vastness (salt flats and galaxies far away), I saw its future (batteries and tech and electric cars), I felt its past in the waters (soak, soak, and more soak!), and I spoke with doctors and friends and family again (what should I do?). The plan was for Dr. Schwartz to prescribe Depakote, a medicine used to treat bipolar disorder as well as seizures and migraines and epilepsy. It’s also used for delirium tremens caused by withdrawal. The thing was—and this coursed through my brain—the only way to know whether it would work was if I didn’t have a manic episode. And the idea of waiting for that terrified me. I had been with H for three and a half years, we were living together, and he didn’t know what it was like when I was manic. I described it on our first date and would pepper conversations with jokes about that time I scaled a building to shower a city in glitter and granola, but there was nothing I could say that would prepare him. I worked really hard to be in a relationship and all of a sudden it was at risk. I worried that if I became manic again, I might run off and ride the rails or that I’d be accidentally unfaithful or that I’d insist on wearing metallic unitards and Mexican wrestling masks (both actions that straddled the line of manic and normal for me). Or that, worst of all, I just wouldn’t be me, and he wouldn’t be able to remember who I was or that I was in there somewhere, at all. I worried that without lithium I could lose my job, my partner, my home, my mind, again . . . because I’d already been through all this.
I don’t believe in God, but I believe in lithium.
I have seen this mysterious substance completely change my life—allow my life to unfold. But I had to let go.
If I were to give up on lithium, the miracle drug that was no longer a miracle for me, what drug would replace it? Lithium had been my longest relationship yet. Lithium wasn’t easy at first either; there were imperceptible shifts and doubts about who I was and how the drug affected me. I have never really resolved those doubts, except to carry on with the assumption that I am a better me with medication than without. So I looked at other options. I was pretty sure that I would try Depakote. But there was fear. (I wished then as I do now that there were a real structure in place, like Alcoholics Anonymous, for people with mental illness to drop in and get some casual group therapy driven by peer counseling. I even have a good acronym for it—MIA—Mentally Ill Anonymous.) I was told that the transition would not be an instant switch. I’d start Depakote, see how my body reacted to the new medication while on a full dose of lithium. We would slowly increase the dose of Depakote over months until I was on two full doses of mood stabilizers. Then we’d gradually decrease the lithium. That was the plan. In September 2015, I took my first Depakote. It was large and difficult to swallow and I resented it.
Depakote, the brand name for valproate, valproic acid, or divalproex sodium, did not have the same appeal as lithium. For one, it was a real drug that the pharmaceutical industry had made billions from. It did not come from primordial stardust; it was not an essential element in calming waters; it did not make fireworks red. It was a tested and proven drug with an unglamorous origin story. Beverly Burton, a chemist in Würzburg, Germany, synthesized a mood stabilizer compound during early fatty acid research in 1882. For the compound to be impactful, Burton had to figure out how to transform it from liquid to salt form, which he couldn’t. Consequently the compound was shelved. By the 1940s the compound was investigated in Europe as a potential oil replacement during wartime, then shelved again until two decades later when Pierre Eymard under the supervision of George Carraz used valproic acid to dissolve khellin, a plant with potential antispasmodic properties. In the same way that Cade had mistakenly used lithium to dissolve uric acid, Eymard intended to use valproic acid to dissolve khellin. Instead, he found that it prevented epileptic seizures. In 1962, Carraz transformed the liquid into a salt by adding a nitrogen group to sodium valproate that would enhance its psychotropic properties and eventually become valpromide (used for epilepsy) and valproate (geared toward manic symptoms). The medications were tested on patients in a Catholic ward in France, and the nuns proclaimed success in “personality strengthening”—that the patients suddenly looked younger, had less gray hair, and were less irritable. But valproate and valpromide were selling well for epilepsy, or as anticonvulsants, so drug manufacturers did not continue to test their effect as a mood stabilizer. Yet, papers were published in France and in Germany chronicling the effectiveness of Depakote on mania, and by the early 1980s psychiatrists in the United States were starting to use the medication off-label. In 1987 and 1991, Abbott Laboratories filed for a patent on a new stable semisodium valproate. Its formula differed from the original formula in Europe by one sodium ion, making it distinct enough to be considered unique. Charles Bowden, a psychiatrist trained in Fieve’s lithium clinic, developed a far-reaching clinical trial for Abbott and got a license application to study its effect on mania. The drug was patented in 1995—a year and a half after I was first hospitalized—and Abbott made billions. The company, Abbott Industries, and its spin-off AbbVie, reported a Depakote sales peak of $1.5 billion in 2007, but when the drug went off patent in 2008, sales dropped. Lithium—because of its status on the periodic table of elements and because it’s been used in medical practices for more than a century—has never been a big moneymaker. I can take home lithium from the pharmacy without health insurance for about seventeen dollars a month, whereas a full dose of Divalproex (the form of Depakote I was taking) costs closer to seven hundred dollars a month, a completely prohibitive cost if you don’t have health coverage. In 2012, Abbott paid a $1.6 billion fine for remarketing the drug as a way to treat agitation in elderly patients with early dementia and schizophrenia when it wasn’t FDA-approved for those applications. This barely dented its overall profit. In 2012 a class-action lawsuit was filed against Abbott by mothers who gave birth to children with birth defects and cognitive dysfunction as a result of allegedly taking Depakote during pregnancy. In the lawsuit, the plaintiffs claimed the natal risks weren’t clear on the warning labels and that Abbott should be held responsible. By mid-2017 alone, 695 lawsuits have been filed nationwide. (The outcomes of these cases are pending.) Suddenly, my medication went from an anarchistic punk-rocker to a villain of a John Grisham novel.
What’s most significant about Depakote’s rise to prescription power is that it was one of the first drugs that was actively marketed when a simpler, cheaper alternative was available. There was no incentive for doctors to prescribe lithium when Abbott would send boxes full of samples and swag. Patients would begin treatment on Depakote and were reluctant to switch if it worked.
When I looked at the pill, I was hesitant. I hated it. And then I felt it in my body and hated it more. I almost instantly gained seven pounds and I was bloated all the time. I couldn’t stomach any food that I was used to. Lemons, hot sauce, kombucha, grease, cheese—any food that was acidic or complicated to digest—became my enemy. Even raw vegetables. I was limited to crackers and soup for the first weeks, and I still felt rough with every bite. I was more dehydrated than I’d ever been on lithium and couldn’t speak for long periods of time without getting extreme dry mouth. For someone who talks a lot, this is a major problem. I chewed gum, I carried water with me, but I felt like I was so dry that I had turned into one of those old, kind creatures in The Dark Crystal who moved so slowly and whose skin was so cracked that it was hard to tell them apart from the desert they walked on. My skin was dry and I cried a lot. More than I ever have. Dr. Schwartz said some of the intensity could have been from taking both medications at the same time—they could have been interacting in some way that amplified the side effects. He wasn’t sure, he said, because it’s different for every person.
Another gross side effect (and you should stop reading for the next few paragraphs if you’re squeamish) was a complete change in bowel movement schedule—I pooped all the time and sometimes with very little warning t
hat I was going to need to. That kind of indigestion is not something a person can live with easily. At least not this person. Mania is much more appealing. I felt lethargic; I could barely wake up and when I did I would want to stay in bed, comatose. But Dr. Schwartz and friends who had been on Depakote said I should try to power through, that my body would adjust, that it was possible that the Depakote could still work. What was more troubling than the physical side effects were the mental and emotional ones. I didn’t feel like myself. I was drowning and far away, irrationally angry, disturbed by things I would normally find okay. I snapped at H, I snapped at my mom on the phone when she would suggest I keep a diary. Nothing seemed to soothe me—not boxing or painting or my favorite pastime, watching bad police procedurals. L.L. Cool J, Scott Bakula, and Lucy Liu had helped me through many rough times but not these.
I felt off. I didn’t have the words at the time, and I still don’t fully, but it resembled what had always happened a few days before my period when I wasn’t yet taking the kind of birth control that regulated my hormonal cycle. During my period week, I would turn into a lunatic. For those days, every part of my life was falling down. I would pick fights with H, assume we needed to break up, want to quit my job, be angry at the weather, glare at the moon. My gynecologist suggested a different birth control and all of sudden my monthly outbursts were tamed. I know it was the birth control that was responsible because when my pharmacy would send me home with the generic form of Generess Fe (which happened more often than not because of my insurance company), I slipped right back into the k-hole of psycho anger and flailing about. That was how Depakote felt on week one. That was bad.
The worst, worst part of trying to assess a new medication was the not knowing. Not knowing whether your feelings are valid, whether the symptoms are real, whether what you’re feeling is coming from the medication or from one thousand other life variables. How would I—and Dr. Schwartz and those around me—determine which side effects were bad enough to stop taking it? Week two, I felt the same. Week three, same. Week four, I wanted to murder Depakote. Week five, I was barely able to keep it together at work without fistfights and naps in the nap room. Week six, I called it. I felt too bad and I didn’t like it. I couldn’t see transitioning to life like this. I thought I would happily sacrifice a kidney to stop feeling this way. This wasn’t me. Dr. Schwartz agreed, and I went home and flushed those horse pills down the toilet. (Not literally, they were too big to be flushed! And I would never subject the fish to that torture!) I was eager to try the other possibilities—Dr. Schwartz and Dr. DeAntonio and the current literature had all listed Tegretol as the next drug to try. Then Lamictal was next up, and a handful of others were in the wings. It felt like I’d be fine, with plenty of options, 90 percent sure. There were so many options that it would be okay if my body rejected the first one. The world of psychopharmacology was ripe with fruit. That was what it always seemed like on pharmaceutical ads—that life was one pill away from being a blissed-out golden retriever chasing a red balloon on a lazy Sunday. That we all could be happy, would be happy, should be happy. (No one ever pays close enough attention to the litany of side effects speed-read while the golden retriever is chasing sunbeams.)
Next batter! Tegretol. Aka carbamazepine. It was also developed as an epilepsy medication in the 1960s by Swiss chemist Walter Schindler, but it was hard for me to care if it had a cool or uncool backstory. I just wanted it to work. The pills were normal-sized capsules, half yellow and half black like a wasp, Wu-Tang pills. They were already an improvement from Depakote’s horseness. The first couple weeks went smoothly. I didn’t feel markedly different. Tegretol seemed to be working. Great, this was going to be easier than I thought. The most frequent side effects, particularly during the initial phases of Tegretol-taking, were dizziness, drowsiness, unsteadiness, nausea, and vomiting. I didn’t feel any of that. I took regular blood tests to confirm that the Tegretol was not adversely affecting my kidneys or thyroid. All the levels seemed great, more perfect than one might imagine. Then I went for my routine physical, got all my annual labs done, and my primary doctor, Dr. Lane—alarmed once again and saving the day once again—inadvertently found that the Tegretol was causing a toxic reaction in my liver. When he told me, my eyes got hot and wet. He said it was a rare side effect. Lucky me. I felt like my options were dwindling and that maybe finding another miracle medication might not be in the cards. That I might not have an option at all. And I was not into the idea of another damaged internal organ.
It was a blow to my liver, my kidneys, my body. I put on my headphones, played one song because I could not think of another anthem I needed to hear: embarrassing but whatever, Chumbawumba’s “Tubthumping (I Get Knocked Down).” I tried really hard to internalize the exuberant horns and the relentless uptempo. I got teary in spite of the persistently perky chorus that defied the reputation of the anarchist band. I wrote in my medication diary that I was “sad that one path of survival, one scenario was erased. I’m not dead or dying, just sad. Sad that one thing didn’t work when I felt certain that it would.” But then, I knew I still had lithium. At least I had that. A lot of people don’t have that. About 3.5 million people with mental illness receive no treatment. I wrote, “Fucking internal organs. I’m ready to carve out my spleen and hand it to the Pharma Gods. I will give you this, just give me that. Give me something to make me feel ok.” But wah wah, so many people have to juggle combos of meds and have all the side effects I was experiencing and can’t get a break from mania or depression or anxiety or obsessive thinking. I had twenty years of a good run and I knew I was still lucky to have an option in lithium.
CHAPTER 21
THE CALM WATERS OF BAD KISSINGEN
AROUND THE SAME TIME the Tegretol got flushed down the toilet (again, not literally, I love fish), my cousin Gavin e-mailed. He had been researching my paternal grandfather’s family and it turned out that this magical place Opa had described visiting every summer before the war—Bad Kissingen—was known for its waters. Bad Kissingen was among the most popular spa towns in Europe during the turn of the century, largely due to the confluence of seven natural springs loaded with minerals, including lithium. During its heyday, Goethe, Schiller, Otto von Bismarck, and Chopin spent summers taking in the waters—bathing in them and drinking the licensed medicinal waters for cures from ailments or just to alleviate stress. It was called the water cure. I decided to go to Bad Kissingen and then to a lithium conference in Rome to gather intel. I wanted to see where my paternal grandfather, probably the calmest human I’ve ever met, soaked and swam and ran through the virgin woods as a child. I wanted to talk to international psychiatrists and see what they thought about my lithium situation. I’d been trying to get in touch with the godfather of bipolar disorder, Dr. Jules Angst, for months, but a language barrier prevented any real communication. He was set to lead the meeting and I thought, if I sat in front of the very person who chaired bipolar disorder’s definition for the DSM 5—the standard classification of mental disorders used by mental health professionals in the United States—that maybe he could help guide me toward a solution or an understanding. I talked with Dr. Schwartz, who thought that when I returned, we should consider trying Depakote again. I said I would think about Depakote and that I would think about the lithium/kidney option as well. Maybe the Depakote side effects had been psychosomatic. Maybe I was ride-or-die with lithium. I was back to the beginning with no questions answered, no medication issue resolved.
On the flight to Frankfurt, a man as thick as he was wide as he was tall, with an army cut and an army-issue backpack, sat down next to me. He was clearly military. He immediately unloaded several small bottles of booze and arranged them in the seat pocket in front. He introduced himself and we started talking. He had completed four tours in Iraq and had just finished cyberintelligence training in Norfolk. We had six or seven hours to kill and it was easy. We talked about General David Petraeus’s strategy. We talked about the time he m
issed a chopper because he went back to get some gear for the flight and took the next one. The first chopper crashed. His dad saw that he was on the manifest; his wife was completely distraught until they realized he was alive. It was fate, he lived. What surprised me the most was how openly he talked about the emotional residue of war. The way it haunted him and changed him. We talked about PTSD, and he kept saying, “It’s a real thing. It really is. No one wakes me up in my house because they’re not sure how I’ll wake up.” He explained that he had been trained to behave a certain way, and being in civilian life was not the same. “I will sit down, like right now and assess a situation and figure out who I might have to take out and who I might be able to save if it came to a survival situation. I feel like I am constantly aware of everything in front and behind me and reevaluating what might be a problem. I can’t stop that. That’s just who I am now, it’s who I’ve been for too long.”