On the surface it doesn’t sound like a big deal—you’re going about your day, then boom: suddenly, you break into fits of uncontrollable laughter or tears.  Experts say less than one percent of the U.S. population experiences this first hand but for those who are afflicted by pseudobulbar affect (PBA), a medical condition triggered by damage to an area of the brain—often from a brain injury—this affliction is no laughing matter.

Delanie Stephenson found this out firsthand in 2012 after suffering a stroke.  Then 33 and the mother of a 4- and 6-year-old, Stephenson initially hoped the laughing and crying episodes would pass. Instead, they began to impact her personal life. Stephenson explained, “I’d try to do simple things, like having dinner out with my family…. and laugh and laugh. People would look at me like I was drunk. Sometimes I’d leave the table and let my family finish their meal to spare them embarrassment.”

Stephenson thought she “was going crazy” and felt relieved when her doctor diagnosed the condition in 2013.  She explains, “I was lucky. PBA is often misdiagnosed and mistaken for conditions like depression, bipolar disorder, PTSD, schizophrenia…” Her doctor described PBA as a mismatch between what you are feeling on the inside and showing on the outside.

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Pseudobulbar Affect Treatment

So far there is just one FDA-approved medication designed specifically for PBA—Nuedexta. It’s not a cure but it helps to somewhat curb the symptoms.

Some sufferers are lucky and PBA, acquired in the early stages of a stroke or brain trauma, can totally dissipate within a few months or years.  That hasn’t been the case for Stephenson, who has been on Nuedexta for six years.

Unfortunately, for Stephenson, who has written two books outlining her life since the onset of her medical condition, Mom Had a Stroke and The Calm Before the Storm: A Stroke Survivor’s Story, her PBA symptoms can be extreme.  “PBA takes over your entire body.  It feels like the world is closing in on you and I sometimes hyperventilate. Sometimes there is urinary incontinence.  Sometimes my husband has to actually remind me to breathe.”

There can be triggers that lead to an episode–frustration, anxiety, feeling overwhelmed or tired. Other times a PBA outburst can happen out of the blue. Sometimes she has an episode weekly; it can also occur several times a day.

Surviving a stroke offers physical challenges. Add in the unpredictability of PBA and Stephenson finds a normal life to be impossible. “I stopped teaching after my stroke. And I try to avoid areas where I have to be around people – church, the movies… I never know when it can hit…”

Pseudobulbar Affect and Depression

Not surprisingly, given the extent that PBA dictates her day-to-day routine, Stephenson finds depression is a side effect of her illness.  “It’s depressing to feel like you are missing out on so much in life… But I feel the worst for my kids. They are teenagers now and often don’t want to have friends over.”

And she’s lost friends since the onset of this condition. “I have kept a few long-term friends but former colleagues, many people I’d known for years—have gone on with their lives.” This condition is not like a broken leg where you put on a cast and others express their concern and ask if there is anything they can do.  In the case of PBA, many people don’t understand why their friend is avoiding many social situations because of what seems like as Stephenson expresses it, “a little extra laughing or crying.”

To find people who “walk in her shoes and understand” her feelings, Stephenson sought out kinship from nurses, fellow stroke survivors and people involved in stroke organizations including the National Stroke Association and the American Stroke Association. She joined support groups. She strongly recommends Retreat and Refresh Stroke Camp which gives attendees the opportunity to bond with other survivors. “I went to the camp last year and now those of us who are local meet monthly.”

She also receives nurturance and support from two Facebook groups—Unseen Effects of Stroke and Stroke Warriors.  Stephenson explains, “These don’t just focus on PBA but on a range of emotions and a lot of people in the group have PBA.” She adds softly, “I do wish there was more of a PBA support network. It’s a relatively new stigma.”

Writing her books  “was therapy,” she said, adding, “I wrote the first one a couple months out of the hospital. It did involve revisiting a horrible time in my life but it also offered me a chance to see how far I’d come.”

Her dearest wish is “for people to understand what PBA feels like.” Illness or not, depression or not, Stephenson wants what every human being needs: to be accepted for who you are no matter what.

Last Updated: Oct 1, 2018