No one loves needing to take daily medications for a chronic condition, but confronting your barriers to adherence assures a better outcome for bipolar disorder.
Making the decision to go on medication for bipolar disorder—and sticking with it to find some-thing that works—can be a hard-fought battle.
It’s common to have doubts about the diagnosis itself, to feel frustrated about having to take pills for the rest of your life, to fear that the medication will deaden a vibrancy that is difficult to surrender.
Or maybe you accept that you need medication to improve your quality of life, but as soon as you feel better you’re convinced you don’t need it anymore. Or the drug you’ve been prescribed causes unwelcome side effects, so you stop taking it. Without the meds, you relapse—with all the accompany-ing disruption a mood episode brings into your life.
Another typical scenario: Whether because of side effects or because the medication isn’t helping, you agree to try something else. No luck, so pretty soon you’re starting over again.
You begin to feel stuck in a maddening cycle of trial-and-error with no end in sight.
Caitlin of California has checked off pretty much that whole list—and is happy she struggled through the roughest parts. Originally diagnosed with depression, Caitlin was hospitalized in 2010 after she started alternating between intense irritability and extreme happiness, making impulsive decisions, and having suicidal thoughts.
Troubling side effects ranged from agitation to daytime sleepiness that had her napping at work. At one point she stopped taking her pills without consulting her psychiatrist, which landed her in a partial hospitalization program.
“Stopping meds at first is often accompanied with a feeling of relief and triumph. ‘I did it! I’m free! I didn’t need those stupid meds anyway, I’m fine!’” Caitlin reflects. “But over time, instability inevitably returns, and is often worse. Going off meds has caused me to miss work, go on disability leave, leave jobs. When I am ill, I am less present with my family. And of course, there is the inevitable crash into suicidal ideation.”
Things changed when Caitlin came to see that meds would make her, if not entirely well, at least better in time. She persisted with the medication search and ultimately found an acceptable combination.
“I’m doing really well now, but for so long I was angry and arguing with psychiatrists and clinicians, trying to come to terms with my diagnosis,” she says. “It has been just in the last year that I’ve accepted it, and that has helped my medication compliance and my attitude. I just had to get over myself.”
No quick fix
Bipolar disorder shouldn’t be managed with medication alone—psychotherapy, self-care strategies, social support, and working toward life goals all play a vital part in recovery—but it’s hard to truly manage bipolar without medication, either.
From a prescribing viewpoint, bipolar treatment is complicated by the need to address two conflicting mood phases. Furthermore, there’s growing evidence that there are distinct subtypes of bipolar illness, possibly with different biological mechanisms requiring different optimum treatments. The “subtypes” theory helps explain why only a third of patients with bipolar respond fully to lithium, which has long been a first-line therapy for stabilizing mood. Finding an effective medication also involves finding the right dosage of that medication, and even that can vary over time as symptoms fluctuate.
Response time is another tricky aspect, given that it can take weeks or even months to see whether a prescription is working as intended. It’s understandable that people get discouraged along the way.
“It’s normal that people want things to work out easily,” says Barbara Szelest-Van Dussen, MA, a psychotherapist from Quebec. She says medical shows on TV give the unrealistic idea that “you can show up at a hospital and there will be a team of doctors who will figure it out for you in a couple of days.” Knowing from the start that a quick fix isn’t likely makes it easier to prepare for a long haul.
“This is a process, and people need to be understanding and empathic toward themselves, or the process will be abandoned,” Szelest-Van Dussen says.
Shame’s to blame
Clinicians and researchers use the terms “compliance” and “adherence” to talk about whether someone is reliably following a treatment plan. Nonadherence is a much-studied topic in both medicine and psychiatry. People with diabetes, heart disease, and even a prescription for antibiotics have all the same reasons as those with bipolar for not keeping up with a medication regimen. Yet as Spanish researchers noted in a 2016 literature review, “the best medication at the best dose can never be effective if the patient does not take it.”
Their analysis of adherence to antipsychotic medicines focused on external factors—younger age, lower socioeconomic status, less education, barriers to care (such as financial hardship or no nearby health centers)—and aspects of the illness itself, including delusional symptoms and cognitive impairment.
Other studies take a more “person-centered” approach, looking at how an individual’s attitudes and preferences affect their use of medication. In 2015, Turkish researchers found “not accepting the disease” was among the top three reasons why people with bipolar didn’t stick with treatment. (The others were “being disturbed by side effects” and “not willing to use medication.”)
Internalized stigma can bring up painful feelings of shame, making it easier to push away a bipolar diagnosis rather than accept that you have a treatable condition that responds to medication. Stigma can also complicate the logistics of obtaining medication.
Tony lives in a small town in Indiana. To lower the chances of running into anyone he knew, he would drive 20 miles to a pharmacy in another town to pick up his prescription. After he was admitted to the hospital during his first psychotic episode, he became more open about having bipolar I and transferred to a pharmacy closer to home.
Tony has weathered unwelcome offshoots from his medications, including excessive weight gain. Yet he realizes that without his meds to control bipolar symptoms, he would have problems at work and with his wife and children.
“I weighed the costs and benefits of the medication,” he says, “and determined that the benefits were greater than the cost.” Deciding to stay the course to find meds that work goes “even deeper than that,” he adds. He describes “a discipline of faith and hope, that things are going to get better. That’s what can help you make it through those very difficult times.”
Doctors can’t consult a chart of bipolar symptoms and pick the best medicine for you. To figure out a treatment approach, New Jersey psychiatrist Chris Winfrey, MD, takes a detailed patient history starting from childhood. He looks at how frequently episodes occur and whether they have mixed features (depressive and hypo/manic symptoms together). He uses assessment tools that measure personality and temperament. He considers any seasonal changes in behavior. He takes into account other variables such as age, weight, and sex.
That kind of extensive information-gathering is fundamental because there aren’t any lab tests or biological markers that pinpoint the best medication options for a particular individual. Figuring out how to tailor interventions, known as personalized or precision medicine, is of growing interest to researchers.
Scientists looking for genetic clues have some leads, including a DNA variation on chromosome 21 that seems common to people who respond well to lithium. But it’s early days yet for any practical applications.
For now, the closest way to predict if lithium will work for you is to find out if it has been effective in any close relatives, according to North Carolina psychiatrist Chris Aiken, MD, co-author of Bipolar, Not So Much: Understanding Your Mood Swings and Depression.
Given all the complexities of prescribing for bipolar, it’s crucial to have a knowledgeable practitioner who keeps up with best-practice recommendations. Case in point: the continuing widespread use of antidepressants for bipolar depression, especially when not paired with a mood stabilizer.
“The public needs to be aware that their doctor’s opinion, I’m politely saying, might be wrong,” Aiken says.
Data going back 10 years shows that antidepressants help in perhaps just one in five cases of bipolar depression, Aiken says. They may actually worsen mood cycles over time and, in some cases, trigger a switch from depression into hypomania or mania. So a better choice would be one of the safer and more effective antipsychotics approved for bipolar depression.
You should also have a doctor whom you trust, who communicates well, and who treats you as a respected partner. Researchers have identified a “healthy therapeutic relationship” as an important determinant of sticking with meds and improving long-term outcomes.
For the partnership to work, you need to be completely honest about symptoms, side effects, and whether you’re actually taking the meds as prescribed. If you’re not liking a prescription, you may find your doctor can recommend relatively easy fixes. Trying a different dosage or changing what time of day you take it might be enough to make a medication tolerable. A medication that makes you drowsy could be better scheduled for bedtime. Having meds you take once in the morning may make it easier for you to keep up with your regimen, or you might discuss the option of a longer-lasting injectable antipsychotic.
Saundra A. Maass-Robinson, M.D., a Georgia psychiatrist who specializes in bipolar disorder, also stresses the importance of finding a practitioner who will be thorough and attentive.
“This is something that’s going to be with you your whole life, and you don’t want to be managing it on your own,” she says.
She notes that you should feel comfortable discussing sensitive topics. For example, some medications affect serotonin levels, which can affect your sex drive. It’s important to educate yourself about what a medication is supposed to achieve and what side effects are likely. Winfrey, the New Jersey psychiatrist, insists that his patients discuss what to expect from a prescription and how to interpret changes in mood symptoms. He says it’s also important to address fears and misconceptions that make you reluctant to use a medication.
For example, someone who associates their hypo/mania with productivity and creativity may feel anxious or even terrified about losing that energy. Exploring different medications or med combos that don’t leave you feeling “dulled down” would be a better solution than opting out altogether and risking a relapse.
Vijay, who lives in Ontario, used to relish the fast-paced, euphoric hypomania of his bipolar II. After he started on medication, he interpreted the slower speed of his thoughts “as an end to my life—the start of a vegetative state.”
Through working with his general practitioner and a psychologist, he was able to shift his perspective and see that the meds actually allow him to think more clearly and effectively about long-term solutions. His treatment team also kept him buoyed during the slog to find his current combination of medications. He recalls his GP’s words of encouragement to “‘just hang on.’ She constantly assured me that relief was coming.”
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