Stroke Smart Sep/Dec 2003
Out-of-control laughing and crying are rare for most people. The isolated incident, while embarrassing, is easily forgiven and forgotten. For some stroke survivors, however, these outbursts are chronic. Some cry 10 or more times a day. Some laugh when they’re sad. Some tend to laugh or cry without any direct connection to emotion or mood. A stroke survivor, when asked why he cries, is apt to say, “I don’t know, but I can’t help it.”
Several terms describe this condition. Emotional incontinence. J Pseudo bulbar affect. Pathological laughing and crying. Emotional Lability. Labile means “open to change.: A labile emotional response comes “out of nowhere.”Regardless of what doctors call it, it’s not funny when someone laughs at news of a loved one’s illness or troubles. Or when someone cries over nothing.
Scientists believe emotional Lability is caused by lesions in the lower areas of the brain. That explains, in part, why people suffering from other diseases affecting the brain – multiple sclerosis, Alzheimer’s disease and Lou Gehrig’s disease, among others – share the same problem with stroke survivors.
At present, there is no FDA-approved drug to counteract emotional Lability, although doctors do prescribe antidepressants with some success. But now there’s hope, thanks to a drug in the pipeline. Neurodex was initially developed by Avanir Pharmaceuticals to slow the progress of Lou Gehrig’s disease. Unexpectedly, patients participating in trials reported that after taking the drug their bouts of laughing and crying stopped.
A capsule taken twice daily, Neurodex contains dextgromethorphan, an active ingredient in cough syrup, which makes sense considering that coughing, laughing and crying originate in close proximity in the brain.
Richard A. Smith, director of The Center for Neurologic Study in La Jolla, Calif., discovered Neurodes and licensed it to Avanir. The trial results have been very promising. “It isn’t just squeaking by, it’s breezing by.” He said. “It’s been robustly successful.” Mild side effects such as drowsiness and dizziness can be reduced or eliminated by adjusting the dosage, Smith said. He hopes Neurodex will be approved by the Food and Drug Administration 2005.
More studies are needed prior to approval, but it is possible for stroke patients to obtain the drug at centers involved in the trials. (Call 1-800-669-0281 for information about a center near you.)
That’s good news for Mary Simpson, who suffered a stroke nine years ago and still can’t talk about anything faintly emotional without bursting into tears.
“I even cry over potato salad,” said Simpson who, fearing an episode of weeping, answered questions by e-mail. “Potato salad reminds me of my mother and summers past.”
Inappropriate laughing and crying is “a difficult symptom to deal with because it affects people’s relationships and causes problems on the job,” said Dr. Nancy Holland, vice president of clinical programs for the National Multiple Sclerosis Society.
Simpson, who lives in western Colorado, is a case in point. Her Lability has made her distance herself from people. “I have to be on guard all the time,” she said. “I have trouble, for example, saying a simple goodbye to friends or relatives that I don’t see often. Come parting time, we have to make it short and sweet with hardly any hug at all.”
Because she must avoid matters of the heart, she finds that misunderstandings between her and friends and family members tend to fester. Adding to her problems is her occasional “weird laughter” that makes people recoil. Many stroke patients also report labile anger and frustration.
For Simpson, anger is “the hardest emotion to regain control over and requires the most self-insight and forgiveness. I get angry easily now. Pounding the desk or table or slamming the door is bad enough, but what’s worse is the self-hatred I feel afterward. Getting past the anger at myself takes so much time. Being startled is another problem. If someone comes up behind me and surprises me, it can take two minutes to catch my breath. I get through most days, but only because I live a very regular, boring life.”
It is no wonder that emotional Lability patients suffer a loss of self-esteem. The normal feelings of warmth, companionship, adventure and discovery are difficult to achieve if you always need to keep your emotions in check.
“Emotional Lability is a very important issue for stroke patients,” Smith said. “It can slow down the course of rehabilitation. It is not only difficult for the patient but also it can wear down the family. And it’s so misunderstood. Most observers, even doctors, assume the problem is depression. It’s important to distinguish emotional Lability from depression.”
Kate Adamson, author of “Kate’s Journey,” a book about her paralyzing 1995 stroke and recovery, recalled an embarrassing episode at a restaurant gathering in which, to the puzzlement of others, she struggled to stop laughing while giving her order to a waiter. Ordering food over the telephone was just as difficult; sometimes she simply had to hang up. The first time she went to church after her stroke, the pastor stopped to acknowledge her presence while she sat in her wheelchair and sobbed in front of the entire congregation. Today, she travels around the country giving motivational speeches and her remarkable recovery has been documented in magazines such as REDBOOK.
Control of her emotions still eludes her. “Once, I was at a Passover Seder and I started laughing and couldn’t control it,” she said. “The rest of the room was listening to the service and I was laughing. If someone is joking and then switches to a serious subject, I’m still laughing. My kids are used to it now. My daughter will tell me she has herself and she’s serious about, but I’ll start laughing. And I’ll cry at any movie that doesn’t have a happy ending. I can’t ever watch ‘E.R.’ It’s too close to home.”