During an interview with David Letterman for his Netflix series, “My Next Guest Needs No Introduction,” singer Billie Eilish made a sudden movement, whipping her head around and opening her mouth. Letterman asked her what was going on — was it the fly that had been flying around them earlier?
“No. I’m ticcing,” she said. When Letterman asked if he could ask her more about it, she said, “Sure … I have Tourette syndrome.” She went on to say, “I’m very happy to talk about it. I actually really love answering questions about it, because it’s very, very interesting, and I am incredibly confused by it, and I don’t get it.”
The 20-year-old Grammy winner explained that she was diagnosed at the age of 11, when she had multiple small physical tics. The frequency of the tics varies but they are never completely gone. “… the main tics that I do constantly, all day long, are like, I wiggle my ear back and forth and raise my eyebrow and click my jaw … and flex my arm here and flex this arm, flex these muscles. These are things you would never notice if you’re just having a conversation with me, but for me, they’re very exhausting,” Eilish said.
She said the tics decrease when she is focusing on tasks, such as singing or riding horses, and she almost never has them when she is performing.
She also talked about the way that people react when they see her having a tic: “It’s really weird …. The most common way that people react is they laugh because they think I’m trying to be funny. They think I’m [ticcing] as a funny move. And so they go, ‘Ha.’ And I’m always left incredibly offended by that. Or they go ‘What?’ And then I go, ‘I have Tourette’s.'”
Eilish said she’s made peace with her diagnosis: “It’s not like I like it, but I feel like it’s … part of me. I have made friends with it. And so now, I’m pretty confident in it.”
What Is Tourette Syndrome?
Tourette syndrome (TS) is a neurological disorder characterized by sudden, repetitive, rapid, and unwanted movements or vocal sounds called tics. TS is one of a group of disorders of the developing nervous system called tic disorders.
The first symptoms are almost always noticed in childhood, typically between the ages of 5 and 10 years. The tics may start in the head and neck area, and progress to include the trunk, arms, and legs. Frequently, tics lessen over time and become controlled by the late teens or early 20s.
The Tourette Association of America, currently estimates that one out of every 160 children between the ages of 5 and 17 in the U.S. has TS. One of every 100 children has TS or another tic disorder.
There are two types of tics — motor and vocal. Examples of motor tics include:
- Eye blinking and other vision irregularities
- Shoulder shrug
- Facial grimacing, sometimes combined with a shoulder shrug
- Head or shoulder jerking
Examples of vocal tics:
- Repetitive throat clearing, barking, or grunting sounds
- Repeating one’s phrasing, or those of others (echolalia)
- Uttering swear or vulgar words (coprolalia)
Tics can also be characterized as simple or complex. Simple tics are sudden, brief, repetitive movements that involve a limited number of muscle groups, and are more common than complex tics.
Complex tics consist of distinct, coordinated patterns of movement involving several muscle groups. An example of a complex motor tic might be facial grimacing with a head twist and shoulder shrug. A complex vocal tic might include repetition of words or phrases, echolalia, or coprolalia.
Common triggers for tics include:
- Stressful events, such as a family fight or poor performance at school
- Boredom, physical illness, or fatigue
- Anger or excitement
Tics decrease with calm, focused activities, adequate sleep, and engaging in new activities that are of great interest.
Some people can suppress their tics to minimize their impact on day-to-day functioning. However, those with TS who do this often report a buildup of tension when suppressing the tics, which ultimately leads to involuntary expression of the tic.
Co-Existing Conditions
Many individuals with TS experience additional co-occurring neurobehavioral problems. These often cause more impairment than the tics themselves. And though the tics may resolve over time, the co-existing conditions may continue into adulthood.
The most common co-existing conditions are:
- Attention deficit hyperactivity disorder (ADHD)
- Obsessive compulsive disorder (OCD)
- Learning disabilities
- Behavior or conduct issues
- Difficulty sleeping or staying asleep
- Social skills deficits and social functioning difficulties
- Sensory processing issues
Treatment
Although there is no cure for TS, there are treatments available to help manage the tics. Many people with TS have tics that do not get in the way of their daily life and, therefore, do not need any treatment. However, medication and behavioral treatments are available if tics cause pain or injury; interfere with school, work, or social life; or cause stress.
Medications include:
- Dopamine blockers are the most consistently useful medications to suppress tics (for example, haloperidol and pimozide)
- Alpha-adrenergic agonists such as clonidine and guanfacine
- Stimulant medications such as methylphenidate and dextroamphetamine can lessen ADHD symptoms in people with TS without causing tics to become more severe: previously, these drugs were not recommended for children with tics or TS and those with a family history of tics; some studies show the short-term use of these drugs can help children with TS who also have ADHD
- Antidepressants — specifically, serotonin reuptake inhibitors (clomipramine, fluoxetine, fluvoxamine, paroxetine, and sertraline) — have been proven effective in some people to control symptoms of depression, OCD, and anxiety
Other therapies and treatments can include:
- Behavioral treatments such as awareness training and competing response training can be used to reduce tics; a recent NIH-funded, multicenter randomized controlled trial called Cognitive Behavioral Intervention for Tics (CBIT) showed that training to voluntarily move in response to a premonitory urge can reduce tic symptoms
- Other behavioral therapies, such as biofeedback or supportive therapy, have not been shown to reduce tic symptoms; however, supportive therapy can help a person with TS better cope with the disorder and deal with the secondary social and emotional problems that sometimes occur
- Psychotherapy can help individuals cope with the disorder and deal with accompanying problems or conditions, including ADHD, depression, anxiety, and OCD
Michele R. Berman, MD, is a pediatrician-turned-medical journalist. She trained at Johns Hopkins, Washington University in St. Louis, and St. Louis Children’s Hospital. Her mission is both journalistic and educational: to report on common diseases affecting uncommon people and summarize the evidence-based medicine behind the headlines.