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Insult to injury. For many people, this saying describes what it feels like to be diagnosed with Pseudobulbar Affect (PBA). PBA is a neurologic condition that appears in some people who already have certain major brain injuries or diseases, such as stroke, traumatic brain injury or multiple sclerosis. The most common symptoms of PBA involve unexpected, intense laughing or crying which usually don’t match what the person is actually feeling inside. These outbursts tend to be brief, lasting for a few minutes each time, and can happen at the “wrong” time, such as laughing in a tense or sad situation, or weeping uncontrollably in a happy one. Some people with PBA flip back and forth between laughing and crying within the same episode.
How Pseudobulbar Affect Feels
One person with PBA from our community very clearly described what it feels like when a PBA episode hits:
“At the time I was having this reaction I was completely unable to control it. It was like standing at a train station watching a train wreck but without ANY emotional involvement…Very strange. Hysterical crying, stop….giggle, stop, then here it comes again, crying…laughing…stop.”
The Impact of Pseudobulbar Affect
The impact of having PBA on a person is complicated and often frustrating or humiliating. Laughing or crying without control or in the wrong situation can lead to feeling misunderstood, judged, isolated or ashamed. It can also intensely impact the people close to the individual with PBA, such as in the case of one community member we recently heard from:
“It’s uncontrollable and makes my family embarrassed. Not being able to control your emotions.”
On top of the PBA symptoms, people with PBA are managing another very complicated illness, since it only happens in people with certain other neurological problems. So they are juggling at least two illnesses, often with limited treatment options and no real cure.
Another person with PBA shared with us their greatest challenge from having PBA:
“Having to constantly check to see if my emotions fit the situation.”
Getting Diagnosed with Pseudobulbar Affect
For some people, it takes a while to get diagnosed with PBA. This delay happens for many reasons, including the fact that PBA can sometimes be confused with depression, people not knowing that their strangely-timed laughing or crying is a medical condition, and people having complicated health situations that take higher priority. It is always best to consult a health care provider, a neurologist, if possible, when PBA is suspected.
Treating Pseudobulbar Affect
In 2011, the first (and only) medication for PBA was approved by the Federal Drug Administration (FDA). It was designed to help reduce the number of PBA episodes people have. Not all people who have PBA choose to or can take it, though. And some health care providers chose to use medication approved for other conditions to treat PBA, such as anti-depressants (even though PBA is NOT depression), in part because they are less costly. However, they are also found to not always be effective.
Some people with PBA also try to use certain internal tools to prevent or shorten PBA episodes. In certain cases, people can actually feel a PBA outburst coming on before it shows on the outside. While it hasn’t been tested scientifically, it is recommended that people consider changing their body position or their focus in these cases. Others get value in trying to concentrate on something very hard when they start feeling the crying or laughing come to the surface. Still others believe that the frequency or intensity of PBA episodes can be reduced with self-care, including getting enough rest, good nutrition, meditation and, when possible, some form of physical movement or exercise.
Talking About Pseudobulbar Affect
One of the common and undesirable side effects of having PBA is isolation. When people are at risk of an episode of public laughing or crying, sometimes the easiest solution is to just stay out of public. But the impact of this choice can lead to boredom, loneliness and even depression. One thing people with PBA can do to try to prevent isolation is to share their story or join a support group.
In 2016 a documentary about people with PBA was released. The film is called Beyond Laughter & Tears and it follows the lives of multiple people with PBA and/or those who care for people with PBA, to try to increase awareness of PBA and its impact. The movie comes with an information kit which includes facts about PBA, some background about the making of the movie, and a discussion guide to help encourage and shape conversations about PBA.
One thing is clear: There is still a lot to be learned about PBA. Increasing the information that is available about living with PBA could be very meaningful for everyone it affects, from the person themselves to their family, friends, care takers and health care providers. If you want to help with this learning, we welcome you to share your story.
Have you been affected by PBA or another health condition? Sign up to share your experiences with Health Stories Project.