It isn’t supposed to feel this way.
I’m 24, lying in my bed at my apartment, doing all I can to will myself to get up. My morning class comes and goes. So does the one at 1 p.m. I’m wide awake, but my thoughts won’t stop spinning. I can’t convince myself that getting up is worthwhile.
I was diagnosed with bipolar disorder when I was 12. Since then, I’ve gone through a slew of medications and treatment options in the hopes of curbing crippling depressions and high-energy manias. Constantly cycling through ups and downs defines this disease. But just recently, I discovered a grey area, a third state that isn’t a manic or a depressive, a high or a low. This is something different, and it hurts more than either extreme. I can’t think. I can’t move. I’m irritable and unmotivated, frantic and morose, all at once.
The medicine isn’t working, I think. What is this weird middle ground, and why is it so much more difficult to endure?
Over the next few days, my feelings of panic and isolation start to recede. I find motivation, and calm, again.
In the middle of my third semester of graduate school at MU, I make a decision to tell my story. I’ve told few people in my life about my illness, and I’m afraid of what may happen when I do, but I’ve tried to do this many times before and always given up. I’m a journalist, and this time my subject is myself. I realize that I have to tell this story, explain myself, both for the sake of those around me and for my own.
I’d been mostly stable since 2011, with minor hiccups in my mood here and there. This most recent incident was one of the harshest in about a decade. And as I worried about another episode, I found myself grappling with the disease itself.
I want to know why this happens to me. Why, after four years of feeling relatively stable on my medications, did I have this breakdown? Did something change? Is there something different going on in my brain? And what can I do — and other bipolar sufferers do — to prevent it?
That’s where my reporting began.
It started mid-April 2015, with about a dozen phone calls to national and international bipolar organizations and scrounging through about three dozen studies of bipolar disorder in the past five years. I hoped to find out what was new in the field of bipolar treatment, where I should start with my reporting and how I could tell not just my story but that of all the people working to make this disease manageable.
Two weeks later, Dr. Thomas Jensen of the International Bipolar Foundation provides what seems to be an answer.
He mentions the mixed state, something I’d never heard of but that immediately makes sense. It’s that grey area that shuts me down between cycles.
“Those are so remarkably uncomfortable,” Jensen says. “It’s associated with racing thoughts. There’s just intense irritability and an intense dysphoria (unease) that is much greater than what you see in other mood states. It’s during such states that people are most likely to become suicidal.”
I can relate to all of that. As much as I hate to admit it, suicidal thoughts are a part of my everyday life. They’re never serious, but they’re there. They come in passing, like thinking about what you want for dinner, and then they fade.
Prozac, I think as he talks. It’s an antidepressant I take, and it’s the one I’ve had to shift around the most often. After that two-day episode in March, I upped my prescription from 40 milligrams per day to 60. I suffer from two of the side effects of the drug: tremors and suicidal thoughts. Both are intermittent and, I used to think, minor. Now, as Jensen speaks, I start to believe they might be more serious than I imagined.
“Mixed states can be induced by exposure to antidepressants,” he says, “and in my view, the observation that some people become suicidal while on antidepressants is consistent with the depressant putting people into a mixed state.”
That’s news to me. I have always been on the common cocktail of drugs for bipolar: antidepressants plus mood stabilizers, drugs to balance out endorphins. It turns out that research over the past five years has suggested that atypical antipsychotics – the drugs used to treat schizophrenia and other behavioral disorders – might work better than antidepressants. Some commonly known drugs are Abilify, Seroquel and Clozaril. Clozaril was the first of these drugs, developed in 1971. It was first used in the U.S. for mood disorder treatments in 2002.
I thought about medications I’d taken in the past. Abilify used to be in my regimen, and when I was on it, I felt fine between outbursts. The problem was that it didn’t rein in my cycling. Was the Prozac working any better, though? I’m not so sure now.
There’s still a ton of research left to do, and solving the mixed state problem is the next big to-do for researchers when it comes to effective treatment of bipolar disorder. Medication keeps bipolar sufferers such as myself from falling over the edge. But that middle ground, the one that causes more suicides than any cycle, the one that cripples me from time to time? It remains a problem, not just for me, but also for bipolar patients around the world.
Bipolar affects 5.7 million people in the U.S., according to the National Institute of Mental Health. That’s one in 50 people.
Bipolar disorder is the 12th leading cause of disability in the world, according to the World Health Organization, ahead of asthma, glaucoma, Alzheimer’s and drug abuse problems. All of those illnesses are highly prevalent in national discussion of disease and treatment. We see ads on TV for ADHD and erectile dysfunction. But bipolar? Non-discussion for the most part.
So little seems to be known about this disease that even I, who have been suffering from it most of my adult life, don’t know about something as important as the mixed state until Dr. Jensen mentioned it in passing during our interview.
The mixed state was first recognized in 1969, but it wasn’t considered treatable. Curbing the cycling of patients, most thought, would lessen the effects of the mixed state. At the time, bipolar was pretty misunderstood, as well, so more of the focus went toward the disorder as a whole than its transition stage.
“Conventional descriptions of bipolar disorder tend to treat the mixed state as something of an afterthought,” Johnathan Cavanaugh wrote in his 2009 study “A Novel Scale for Measuring Mixed States in Bipolar Disorder.” “There is no scale that specifically measures the phenomena of the mixed state.”
The scale is important because it helps categorize mixed states as their own portion of the treatment and can help doctors decide how best to treat patients. No two cases of bipolar are the same. Some people are more prone to manias, some to depressives, and some, it seems, might be most affected by the mixed state.
Cavanaugh, along with Matthias Schwannauer and Mick Power of the University of Edinburgh, and Guy Goodwin from the University of Oxford, attempted to create such a method for finding where the mixed state occurs and the severity of it. Around the same time as this research, the field came toward a consensus that antidepressants, a long-accepted pairing with mood stabilizers to combat bipolar, might make manic stages more intense, much like alcohol makes depression more intense in antidepressant users. Antidepressants, much like painkillers, can dull the brain’s control of its reactions to stimuli.
“It is important to pursue the question of whether mixed states represent a separate category or are an important dimension,” of bipolar disorder, Cavanaugh and his team wrote. The mixed state might require separate drugs for treatment, or it might need to be considered in balancing drug regimens, just as mania and depression tendencies are.
This research became more and more relatable. I’d lived through mixed states, and slowly, I was beginning to understand them. The medical jargon was actually easier to digest than when I tried to dissect the disease itself.
For me, the mixed state is hard to describe. It’s like losing control of your limbs. You know they’re there, you know you can normally move them, but for whatever reason you can’t. Take that, and apply it to your brain. After so many years of coping with bipolar, I know what my triggers and tics are. But even so, at times, it’s impossible to control my reactions to things or the thoughts that start cycling through my head. I’m not in control, and that makes the mixed state all the more powerful.
Sometimes I become obsessive about cleaning. Others, I give up on getting out of bed. Sometimes I talk faster than most ears can handle. Others, I refrain from talking.
Brains work on millisecond-by-millisecond firings from neurons that help process information. Brain chemicals known as neurotransmitters (serotonin, dopamine and noradrenaline) help keep a balance. An imbalance in serotonin and dopamine, which are the calming and pleasure chemicals, respectively, likely cause bipolar,. Over time, this imbalance affects the way neurons fire, and portions of them start to degrade.
I take Prozac, an antidepressant, as well as Lamictal, a mood stabilizer. Lamictal, one of the biggest breakthroughs in mood stabilizers for bipolar, is also used to treat epilepsy, which is also caused by abnormal electrical discharges in the brain.
I email countless foundations, international scholars, the editors of the Diagnostic and Statistical Manual of Mental Disorders-5 (the handbook on disagnosis of treatment of mental disorders) . I reach out to attendees of a meeting in Cappadocia, Turkey, where leading researchers in bipolar discussed trends and issues in the field. I download dozens of studies from 2009 to present.
This, of course, all happens during a mania. I’m productive but almost too excitable. I often forget why I’m doing what I’m doing (my short-term memory is completely shot) so I just do everything at once. I was so excited. A breakthrough in my treatment! When I started coming down, none of it made sense any more.
This article didn’t make sense. My story didn’t make sense. What I’d written looked foreign. What I’d learned seemed insignificant, unhelpful.
Looking back, this might have been a result of my new drug regimen. I was most likely in a mixed state. That makes my research and this article all the more important to me in my good moments.
I want to understand this grey area and maybe even control it. But to do that, I need to know more.
The term bipolar disorder was first recognized in the Diagnostic and Statistical Manual of Mental Disorders in 1980. Since, the definitions of what bipolar is and isn’t have changed dramatically. The length of manias necessary to diagnose bipolar has increased. Researchers added degrees of bipolar states, such as hypomania, a less severe up stage. Bipolar I, the more manic form of bipolar, was separated from Bipolar II, which features stronger depressive states.
And in the past two editions, the DSM-IV and DSM-5, authors have made the qualifications for diagnosing bipolar more stringent in an effort to curtail overdiagnosis of the disease. That’s been a trend in both bipolar and attention deficit hyperactivity disorder.
However, treatment of bipolar has remained mostly stagnant as definitions of the disease have changed. Anti-psychotic drugs are slowly becoming a norm in drug regimens, but the field itself has an identity crisis: cautious of new treatments on one end, excitable and quick to act on the other.
“Right now, it’s kind of variations on a theme,” Jensen says. “Every now and then, a new atypical anti-psychotic will come out, and they’ll test it for bipolar disorder, and it seems like every typical anti-psychotic that works for manias will get the FDA approval. Whether those are real breakthrough treatments or not is pretty questionable.”
It’s 2 a.m., a couple days after my interview with Jensen. This time, I can’t get myself to lie down. The wheels won’t stop turning. Everything’s fuzzy.
I can’t focus. Moments from years ago dart around my head as I try to close my eyes. Why would you say that? What the hell is wrong with you? God, that was so embarrassing. How could you do that?
The internal dialogue makes it impossible to sleep. When I’m around others, it makes me unable to participate fully in conversations. I can’t form words. I can’t keep my mind on what’s going on around me.
Music always helps. I can’t remember the last time I went to sleep without it. My dog, Wrigley, a 2-year-old pit bull and Labrador mix, helps too, despite how annoying her bed-hogging is.
I try to push the thoughts away and rest. I’m used to the routine by now. It takes me a couple hours to drift off.
Despite all the steps we’ve taken in society, mental disorders remain taboo. We can talk about sexuality and race. But I’ve never felt comfortable admitting I’m broken.
Most people don’t use “retarded” or “gay” as insults anymore — educated people, anyway — but you’ll still hear “the weather is so bipolar here” or “my girlfriend is acting bipolar.” Those are references to volatility, insanity, something that is uncontrollable and to be feared.
Meanwhile, my struggles continue. Minute tasks become mountains. Life becomes labor.
I love what I do. I love where I’m at in life in the rare moments when things are normal. But how do you do that, how do you do anything, when your brain stops letting you feel love, joy, peace, excitement?
You just try. It’s all you can do.
A week after staying up all night, I’m in the bathroom and staring at two bottles.
Sixty milligrams of Prozac: three slim aspirin-shaped pills. Four hundred milligrams of Lamictal: two diamond-like tablets. Every day, between 8 and 10 a.m., until it stops working again.
I wonder what people will think when they read this story. Will anyone care? I’d like to think that others will be sympathetic. I want to tell this story. I just don’t know how. Not yet.
I twist open the vials, and the caps clack on the sink. In they go, with a splash of water, and I promise myself I won’t make any more excuses.
This experience taught me so much about my mind, why I face the struggles I do and how to address them. My depressive states happen more often and are more severe than my manias, so Prozac is a good call in my treatment. But maybe I’ll talk to my psychiatrist about adding Abilify again. I want to be safe. I want to be as healthy as I can be.
I sit on my bed. The TV is off, and my dog is napping. I silence my phone. Nothing can stop me. Not my fears, not my limitations, not this damn disease.
No music this time. I listen. And then, I write.
It takes me 18 hours — pushing, resting, thinking, struggling, straddling the line of typing and quitting — but the words come, slowly. At 1 a.m., I shuffle into bed. The story was done. I got it all out.
For whatever reason, perhaps a bit of serendipity, sleep comes easy tonight.