As a young teenager, Inshirah Aleem was sure she’d be heading to Harvard Law School in a few years. But the straight-A student went down another road. Within months of her 14th birthday, the quiet girl was telling outrageous lies, running away from home and stealing. She eventually landed in front of a judge and later was sent to foster care, where she lived in a basement, her belongings stuffed into a trash bag.
It would be a year before Aleem, now a 38-year-old schoolteacher living in Greenbelt, was diagnosed with bipolar disorder. The brain condition is characterized by high (manic) moods and low (depressed) moods as well as by fluctuating energy levels. These unstable states are coupled with impaired judgment. The diagnosis explained her racing, disjointed thoughts and almost completely sleepless nights. And it explained her terrifying hallucinations, which were followed by a catatonic state where Aleem couldn’t move or talk.
About 2.6 percent of adults and about 11.2 percent of 13- to-18-year-olds have bipolar disorder, according to the Substance Abuse and Mental Health Services Administration.
The disorder can be hard to recognize and harder to treat. Combining medications often brings substantial improvement, but some patients experience side effects and show minimal improvement. Researchers, who have found that bipolar disorder is inherited more than 70 percent of the time, hope to identify drugs to target the 20 genetic variations known to be associated with the disorder.
Some patients who don’t respond well to antidepressants are treated with transcranial magnetic stimulation (TMS), which involves placing on the patient’s forehead a small magnet that creates a mild electrical current to stimulate a brain region associated with mood disorders. TMS has been found to treat the depression without setting off mania.
Bipolar disorder is a somewhat controversial diagnosis. Research that appeared in the Journal of Clinical Psychiatry in 2008 reported that less than half of a group of people who were said to have the mental illness met the American Psychiatric Association’s diagnostic criteria. (The data came from interviews with 700 psychiatric patients.)
The study showed that bipolar disorder was often misdiagnosed — and more likely to be overdiagnosed than underdiagnosed. The study, which is ongoing, shows an approximate threefold rate of overdiagnosis compared with underdiagnosis, says Mark Zimmerman, a psychiatrist at Rhode Island Hospital in Providence and principal investigator in the study.
Overdiagnosing bipolar disorder can lead to prescribing medications that may have significant side effects with no benefits. It can also create the stressors of wrongly carrying the label of a serious illness and of dealing with social stigmas, says James Potash, chair of psychiatry at the University of Iowa Hospitals and Clinics in Iowa City.
Conversely, underdiagnosing bipolar disorder results in missed opportunities to provide the best treatment. Often people are misdiagnosed with depression and given antidepressants without mood-stabilizing drugs. This can worsen bipolar disorder, leading to more mood swings, Potash says.
Zimmerman says family history can help make the diagnosis.
“We have looked at first-degree family members [parents, children, siblings] of individuals whom we, upon careful evaluation, diagnosed with bipolar disorder. We found they were significantly more likely to experience bipolar than first-degree family members of individuals who were never diagnosed with bipolar.
“We also found no diagnoses in first-degree family members of individuals whom we determined did not present with bipolar disorder,” he says.
Until about two years ago, a broader definition of the ailment for children than for adults resulted in a surge in bipolar disorder diagnoses. This surge occurred over the course of a decade beginning in the late 1990s.
Some researchers believe the increase may partly be the result of attempts to correct historical underdiagnosis. Another factor may be that other conditions — attention-deficit/hyperactivity disorder, for example — may be mistaken for bipolar disorder because of overlapping symptoms.
Now some children who previously would have been diagnosed with bipolar disorder would be said to have disruptive mood dysregulation disorder. Symptoms of that disorder overlap with those of bipolar illness: extreme irritability and frequent, angry outbursts.
And they say that children with disruptive mood dysregulation were not likely to develop hypomania or mixed episodes, two classic bipolar states.
Some psychiatrists are at least as concerned about overlooking bipolar disorder as they are about overdiagnosing the illness, which typically first manifests in the teen years or the 20s.
It’s often missed because people don’t recognize they are ill, especially when they are manic; because family doctors may not be trained to see it; and because some symptoms mirror those of other problems, say clinicians trained to treat it.
Bipolar disorder has several phases, with the most recognized being mania and depression.
“With mania, their minds race and they talk very fast in a way that is disjointed. It’s like the volume being all the way up in your brain to the point where it is painful and you are out of control. Depression is the volume turned way down,” says Potash.
In a more subtle phase, hypomania, the volume is just high enough to be pleasurable.
“You think and talk somewhat faster, though in brief conversation someone may simply think you are in a good mood. But your judgments and behaviors can be off and get you in trouble,” Potash says.
The least-understood phase is mixed states, with lows and highs at the same time. For instance, mood might be low and energy high, a state known as agitated depression. Mixed state worries practitioners most; it comes with a high suicide risk.
Scott Aaronson, director of clinical research programs at Sheppard Pratt, a psychiatric hospital in Towson, Md., begins to seriously suspect bipolar if he finds three or more episodes of depression in 12 months.
Accurate diagnoses have taken months to years, he says.
“You must identify and understand stretches of time where a person’s thoughts and feelings were not quite right. And then work through each stretch to recognize signs and symptoms that would indicate a phase of bipolar disorder,” Potash says.
Aleem’s parents and her therapist thought she was simply acting out for a year after the signs surfaced.
“I had transferred to a public school where I was the ‘different girl,’ teased and ostracized. They thought it was just the transition,” she recalls.
Still, once a psychiatrist determined she was bipolar — after a faulty diagnosis of schizophrenia — there was no easy fix.
She took 30 pills a day, enduring major side effects: weight gain of more than 100 pounds, eye seizures, hand tremors and the loss of some of her hair.
“I couldn’t go to college, work or drive. My 8-year-old niece became my best friend,” recalls Aleem, who spent her days at her mother’s side in Springfield, Mass., until she was 21.
But she chose the side effects over the hallucinations and feelings of spiraling out of control. As she remained relatively stable, her dose was eventually halved. She began to feel closer to whole again.
With genetic testing, psychiatrists hope to do better on the treatment front.
“We want to reach a point where these tests could tell us what brain pathways are disrupted and be able to interrupt those pathways,” Potash says. His recent work identified genetic markers in people who were likely to respond well to lithium after multiple other medications failed.
Aaronson says he has had “terrific results” with TMS, particularly in addressing depression in bipolar patients who have what are called clear manic episodes — defined by the APA as a period of at least one week when a person is very high-spirited or irritable and shows such other symptoms as less need for sleep, talking more than usual, increased risky behavior and racing thoughts.
Aaronson considers TMS’s effectiveness in those with both depression and manic episodes a breakthrough because treating these patients’ depression without setting off their maniahas been tough.
People with bipolar disorder often also are dealing with emotional trauma and substance abuse. Sixty percent at some point will meet the criteria for drug and or alcohol abuse. And staying sober affects prognosis more than medication does, according to Aaronson.
“I advise my patients to sleep well and to not drink. And I encourage them to have insight about their illness because a good prognosis depends on getting to a point where they recognize when they are falling down or going into a manic or mixed episode,” he says.
He also incorporates yoga, meditation and other relaxation training. Research suggests that combining meditation and therapy may help with memory and executing tasks in bipolar patients.
Aaronson suspects that research will eventually show that diet plays a role in mood regulation. Omega-3 fatty acids in fish oil may help. This dietary supplement inhibits, or slows, protein kinase, which is part of a signaling pathway in the brain associated with bipolar disorder, explains Lauren Marangell, a psychiatrist in Houston.
Marangell says that adding omega-3s will do no harm and may provide benefits, cautioning that people should not stop taking their traditional medications unless they have a mild form of bipolar and want to avoid side effects.
Aleem, who had no idea what was happening to her 20 years ago, will have to deal with bipolar disorder all her life. She speaks about her illness at universities and elsewhere, and she has written books on her life with bipolar disorder while working full time and raising a daughter.
Down to four drugs and with intermittent cognitive behavior therapy to help her reframe her thoughts, she says, “I’m back in society for 10 years now. What’s changed is I know my illness and how to care for myself. It’s a journey with ups and downs. You have to keep fighting.”