Unpredictable Laughing and Crying? You Can Take Back Control!

By Susan H. Connors, President/CEO, Brain Injury Association of America

Imagine yourself at a funeral or other solemn occasion when a gentleman in the pew next to you suddenly bursts out laughing. Other mourners turn and stare while embarrassed family members hide their eyes. There’s nothing funny about the situation, but the man is unable to control his emotions. He may have pseudobulbar affect or PBA.

PBA is a medical condition causing sudden, frequent, uncontrollable crying and/or laughing that doesn’t match how a person feels. It is common among people who have experienced neurologic injury or illness, such as brain injury, stroke, multiple sclerosis, Alzheimer’s disease, and ALS (amyotrophic lateral sclerosis). There may be as many as two million people living in the U.S. with pseudobulbar affect.

For more than a decade, the Brain Injury Association of America (BIAA) has been learning about PBA, the proportion of people with brain injury who experience PBA, and how to get control over the condition. In our first survey of individuals with brain injury and their caregivers, conducted in summer 2010, we learned approximately half of the 248 respondents exhibited PBA symptoms frequently or often. Two-thirds of those who experienced PBA said the episodes were burdensome, reporting that it interfered with friendships and social activities and contributed to becoming housebound. One survey respondent stated: “I have found myself staying inside, avoiding interaction with others, high anxiety when participating in family activities due to knowing I may break out in tears… Makes others very uncomfortable, and I do not want others to feel sorry for me or have my injury be the center of all communications with others.”

In autumn 2018, BIAA conducted another survey about pseudobulbar affect. This time, 151 respondents described the condition as “frustrating,” “embarrassing,” “unpredictable,” and “misunderstood.” The majority of respondents discussed their PBA with a neurologist or primary care physician, but almost one-quarter did not discuss it with a doctor, claiming it was too embarrassing or nothing could be done about it. About one-third of respondents said they talked to a psychologist or psychiatrist about their PBA, suggesting their belief that PBA is a mental health disorder and that the laughing or crying outbursts are somehow willful. More than half of the survey participants said they had not received treatment for their PBA.

It was time to found out why!

BIAA conducted a third survey in September 2021. A total of 110 respondents reported having experienced PBA. Slightly more than half were male and age 50 or older. The primary causes of injury were motor vehicle accidents (40%), falls (14%), and strokes (14%). The vast majority of respondents sustained moderate or severe injuries. The PBA symptoms appeared anytime immediately following the injury to 2 or more years later.  One respondent explained: “I was having a lot of uncontrollable crying/breakdowns for no reason. After I would be like, why was I crying over something stupid? Or the laughing was really bad, certain times it’s not appropriate and I couldn’t control that.”

In this year’s survey, the majority of people with brain injury (or their loved ones) talked with a clinician about the PBA symptoms, but 25% of respondents did not. Of the majority who did talk about the condition, many found it was difficult to get an accurate diagnosis, much less treatment. As one person stated, “Doctors never mentioned it. Learned about PBA & Nudexa from an NPR story.”

Of those who did discuss the condition with their physicians, 21% were referred for psychological counseling, but most said that treatment didn’t work. About 55% of respondents said they were prescribed an antidepressant for their sudden, frequent, uncontrollable crying and/or laughing, and 73% of them still take the medication. Those who discontinued the treatment said they did so because the antidepressant didn’t work or the side effects were intolerable. As one respondent explained: “It took 4 different doctors before being referred to a psychiatrist, who then properly diagnosed me with PBA. Other doctors just kept trying me for depression, even though I explained I was not depressed. I am still having trouble accessing a Medicaid waiver and have been on a waiting list for 3 years… There is not enough awareness & understanding about how debilitating PBA can be. Pseudobulbar affect is more than laughing & crying; it affects my ability to organize, remember things, multitask, or control emotional outbursts.”

Of the 110 survey respondents who said they had experienced PBA symptoms, 18 had been prescribed Nuedexta®. Of those who were prescribed the medication, slightly less than half (47%) still take it. More than half (65%) of respondents who received Nuedexta for their PBA symptoms said it improved the quality of their life. One respondent explained: “When I was taking Nuedexta, my brain felt more clear – clarity and focus, not overtaken by the desire to cry or laugh or even my depression and severe anxiety. It enabled me to act, to move, to execute plans and trust my brain, which had been unreliable and very noisy until then. Nuedexta lowered the noise and improved my confidence and tolerance, which also improved the suicidal ideation.” 

Those who stopped taking Nuedexta did so for a variety of reasons, including because it was no longer covered by insurance. In fact, 44% of survey respondents were denied insurance coverage for Nuedexta despite the positive results the medication produced. As one person said, “I wish I could get the medication again. It was beyond helpful – it was life changing.”

Of those who were denied, 75% appealed, but the results were mixed. Many were denied a second time; some are still waiting for the results.

In our survey, respondents’ insurance varied widely: Medicare (15%), Medicare Advantage (18%), Medicaid (18%), Employer or Individual Health Plan (28%), Uninsured/Self-pay (9%). Individuals with brain injury and their loved ones are familiar with being denied access to necessary treatment regardless of the type of health plan/insurance coverage they may have.

Assess Your Need

Click here to download the Center for Neurologic Study-Lability Scale (CNS-LS) for Pseudobulbar Affect (PBA). The CNS-LS is a short questionnaire that can help individuals with neurologic illness or injury identify the presence of Pseudobulbar Affect symptoms and their frequency. After a week of tracking, patients can share the questionnaire with their physicians.

To learn more about pseudobulbar affect, visit biausa.org/PBA.

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This article originally appeared in Volume 15, Issue 4 of THE Challenge! published in 2021.