Dash Mihok doesn't like going to the movies. Despite years in front of the camera—he had his breakout role as Benvolio Montague in director Baz Luhrmann's 1996 adaptation of Romeo + Juliet, and he currently plays Brendan "Bunchy" Donovan on the Showtime series Ray Donovan—Mihok dreads movie theaters. "If I go, I sit at the back so fewer people will notice me," he says. It's not that he's worried about being recognized. He's afraid he'll bother other viewers with his tics. Mihok has Tourette syndrome, a neuropsychiatric disorder marked by motor and vocal tics.
His first symptoms appeared when he was 6 during a karate class in the building where he lived with his actor parents in New York's Greenwich Village. "We were trying to be still, but I had an urge to whip my hair around my head," Mihok, now 45, recalls. "I couldn't stop doing it."

His mother wasn't surprised when she heard. "She had been praying it wouldn't happen," Mihok says. "She burst into tears." Mihok's two older sisters, 10 and 13 at the time, had already been diagnosed with Tourette syndrome. The family suspected Mihok's father had it as well, though he'd never been diagnosed. "It's far more common in boys, so they had all been waiting for that shoe to drop," Mihok says.
Tourette syndrome typically is diagnosed in childhood. In the United States, one in 100 people may have milder symptoms and about 200,000 have a severe form of Tourette's, according to the National Institute of Neurological Disorders and Stroke. It often runs in families, with a history of tics occurring in about half of patients.

The exact heritability of Tourette syndrome is poorly understood. "Although in many disorders the precise gene is known, that's not the case here," says Harvey Singer, MD, FAAN, professor of neurology at Johns Hopkins Hospital in Baltimore. "Despite numerous studies in multigenerational families, a single major gene has not been identified. Rather, current evidence suggests that Tourette's is caused by changes in a variety of genes, and environmental factors are likely also."

Over the course of his life, Mihok has experienced the full range of typical symptoms, including blinking, grimacing, head jerks, and shoulder shrugs—as well as actions that may appear purposeful, such as jumping, sniffing objects, or touching them. He's had vocal tics like grunting, barking, throat clearing, saying words or phrases, and sometimes repeating others' words. At age 12, he had a brief bout of coprolalia, outbursts of inappropriate or offensive words that people often associate with the syndrome. (Only 10.8 percent of those with Tourette's report experiencing coprolalia, according to a 2015 study in Clinical Pediatrics.)

"You're born with a problem that draws attention when that's the last thing you want," Mihok says. "What hurts most is that you're doing things that can take away from somebody else's experience—like watching a movie. It's a sickening feeling sometimes."

This lifelong disorder has no cure, but like many people with the condition, Mihok found that his symptoms improved in his late teens and twenties. And as Mihok's success in the spotlight—both as an actor and a hip-hop musician—illustrates, people with Tourette's can not only manage their disorder but also channel it in productive ways.

"When I started as a neurologist, I could point to very few public figures who had Tourette's," says Donald Gilbert, MD, FAAN, professor at the University of Cincinnati's department of pediatrics and director of the Movement Disorder Clinic and the Tourette Syndrome and Tic Disorders Clinic at Cincinnati Children's Hospital and Medical Center. "Today there are more, and Dash Mihok is an example of someone who made it to adulthood by learning coping strategies, such as channeling mental and physical energy into the arts and sports. People shouldn't feel hopeless about Tourette syndrome, even if they have a bad case."

Many people with the syndrome also have other neurobehavioral problems, such as obsessive compulsive disorder (OCD) and attention deficit hyperactivity disorder (ADHD). "I don't think I had ADHD, but I have tons of examples of being OCD," Mihok says.

One tic during his adolescence entailed turning off a light switch while jumping in the air. "Everything had to be crisp and snappy or I'd have to do it again," Mihok says. "I'd spend an hour and a half getting that jump just right." A more challenging tic involved lying in bed and propelling his body completely into the air without using hands or arms and landing without bouncing. "Bedtime was a whole process that would keep me up for hours," Mihok says.

Antidepressant and antipsychotic medications were a mixed blessing, and Mihok does not currently take them. "They helped get me through school but made me gain weight, feel like a zombie, or both," Mihok says. "I felt they were threatening my health, so I stopped taking anything around age 14. We did it pretty cold turkey, but I was okay." (A new American Academy of Neurology guideline for treating tics in people with Tourette's notes that abruptly discontinuing antipsychotic medications can cause withdrawal symptoms such as involuntary muscle movements.)

In school, some of Mihok's classmates made things worse for him. "The power of suggestion is crazy—and that's how kids would mess with me," he says. "They'd say 'Don't do this' or 'Don't touch that' as a trigger to get me in trouble. Those nerves would start firing, and I'd maniacally have to do it."

But he remembers other people who helped him. Once, when he and a friend were heading home after playing sports, "I had to touch his head with four fingers," Mihok says. "I said, 'I'm so sorry,' and—I'll never forget this—he said, 'That's okay, George is fine.' 'George?' 'Yeah, like your alter ego.' To this day, I call my Tourette's 'George' or 'Jorge.' My friends and family adopted it, and it makes it easier to imagine that it's not just me but this thing inside me that makes me do what I do."

He also appreciates the elementary school teacher who encouraged him to tell classmates about his disorder. "That was the scariest thing, but having it out in the open was a huge factor in my growth and education," Mihok says.

What stands out as well are the times he learned useful ways to cope—like when his mother bought him a drum set at age 7 or 8. "Playing drums uses the arms and legs and the brain, which helped get things out of my system," Mihok says. Perfecting the timing of the jumping tics helped him develop rhythm. "These are reasons I still make music today," he says. Mihok has written songs, collaborated with various performers, and in 2015 formed a hip-hop group called Diz and the Fam.

Tourette's shaped Mihok's career choices in other respects. "I was constantly studying how to hide my tics or morph them into something else that looked normal," he says. He also was studying people, especially during the subway ride to his high school in the Bronx. While trying to control or cover up his tics on the train, "I'd notice quirks in others and sometimes try to mimic them," he says. The combination of feeling frustrated with his urges, masking his actions, and observing others made him able to embody characters and access feelings quickly.

"I'm not a Method actor," Mihok says. "I don't do a lot of prep to tap raw emotions. But the brain doesn't forget staying up all night with a tic until I cry myself to sleep. In some ways, Tourette's is my Method."

While filming a movie or TV show, he suppresses tics by focusing on his role or on not being a distraction. When the director yells "Cut!" Mihok may succumb to a tic in which he winks and turns his head to obscure his view of a circular light. "Those massive lights on set are the worst trigger of all time," he says.

People often have trouble understanding what tics are like, says Mihok. Dr. Gilbert calls them "a voluntary capitulation to an involuntary urge." They are sometimes compared to the impulse to cough or scratch an itch. "But it's like the strongest itch you'll ever have in your life," Mihok says. "People say, 'If you can control it in some situations, why can't you control it all the time?' If I did, controlling tics is all I'd be doing in life, and what kind of life would that be?"

Mihok makes a point of speaking publicly about the disorder through organizations such as the Tourette Association of America, which he has been involved with since appearing in one of its videos when he was about 10. "The press always asks me about it, so I hope that helps educate people and reduce the stigma," he says.

Mentoring kids is especially close to his heart. "I say to them, 'Tell everybody that you have Tourette's, you can't help it, and you're not trying to ruin their experience,'" Mihok says. He advocates a view of Tourette's that's more blessing than curse. "In Tourette's there is a gift under the surface," he tells young audiences. "You'll discover something that you're talented at or passionate about that Tourette's backhandedly supports. For me, that's acting and music. Keep looking for that thing, and as you do, educate, accept, and love yourself."

What Causes Tourette Syndrome?

Medications for Tourette syndrome can affect people differently, but they offer clues about the mechanism behind the disorder. “Antipsychotics that block the neurotransmitter dopamine, which is involved with control of movement, are among the most powerful treatments,” says Tamara Pringsheim, MD, FAAN, director of the Calgary Tourette and Pediatric Movement Disorder Clinic at Alberta Children’s Hospital in Canada. “So, Tourette’s is often considered a disorder of dopamine transmission.”

Dopamine is the target of a new medication called ecopipam that’s not yet approved by the US Food and Drug Administration but is in clinical trials. “It uses a novel pathway to control movement, blocking a different receptor than any medication currently on the market,” says Donald Gilbert, MD, FAAN, director of the Movement Disorder Clinic and the Tourette Syndrome and Tic Disorders Clinic at Cincinnati Children’s Hospital and Medical Center, who is researching the drug. “The hope is that it will help people who don’t respond to what’s now available.”

In Tourette’s patients, other brain chemicals besides dopamine interact in multiple areas of the brain through a neural loop known as the cortico-basal ganglia-thalamo-cortical circuit. “Just because a transmitter-specific medication successfully suppresses tics, it doesn’t prove it’s the primary abnormality causing the tics,” says Harvey Singer, MD, FAAN, professor of neurology at Johns Hopkins Hospital in Baltimore. “Tourette syndrome is very complex. We know a lot more about it than we used to, and extensive research is happening, but do we have all the answers? Not yet.”

AAN Treatment Guideline for Tourette Syndrome

In May 2019, the American Academy of Neurology (AAN) published its first guideline on treating tics in people with Tourette syndrome and chronic tic disorders. Based on a review of the evidence, the guideline consists of 46 recommendations on assessing and treating tics.

"We wanted to provide an overview of different options," says the guideline's lead author, Tamara Pringsheim, MD, FAAN, associate professor in the department of clinical neurosciences at the University of Calgary's Cumming School of Medicine in Canada. "Now we can tell physicians, 'This is the evidence, these are the treatments, these are their effects, and these are their side effects.' Then they can discuss these options with patients in a consistent way."

The guideline emphasizes that Tourette's often occurs with other neurobehavioral syndromes, such as attention deficit hyperactivity disorder and obsessive compulsive disorder, and requires individualized treatment. Tics that don't cause significant problems with daily life may not need to be treated and are likely to decline with age.

For those people who are seeking treatment, the guideline recommends a nondrug therapy known as comprehensive behavioral intervention for tics (CBIT). "Behavioral therapies are not something neurologists are routinely educated about, but they can be highly effective and are among the most promising treatments," Dr. Pringsheim says. "Behavioral therapy doesn't mean correcting bad behavior but teaching skills and strategies to recognize urges, manage them, and suppress the tics."

One such strategy entails doing another action when the tic or impulse occurs, like placing your hands on your knees to counteract an urge to rub your head. Therapy also can help people understand when tics tend to be at their worst and make appropriate accommodations—for example, switching to a less visible seat in a classroom (or in Dash Mihok's case, the back row of a movie theater).

Beyond behavioral interventions, the guideline notes that some people use cannabis to ease the urge to tic and finds limited but increasing evidence that it may be effective. In particular, dronabinol, a synthetic version of the cannabinoid delta-9-tetrahydrocannabinol (THC), may be more likely than a placebo to reduce tic severity. Not enough evidence exists to determine whether cannabidiol (CBD) or different strains of medicinal cannabis may be as effective. Whatever people use, the guideline strongly recommends that patients use the drug under appropriate medical supervision in states where it's legal.

The guideline also describes such treatments as injection of the neurotoxin botulinum into muscles that produce tics to weaken or paralyze them, noting that relatively weak evidence suggests it may reduce tics in older adolescents and adults with a severe form of Tourette's. Regarding deep brain stimulation, in which an implanted electrode alters activity in brain circuits, the guideline says it may help people with severe Tourette's when drugs and behavioral strategies don't but should only be considered in the context of a multidisciplinary evaluation that includes a neurologist or psychiatrist, a neurosurgeon, and a neuropsychologist.

"The guideline is designed with patients' best interests at heart," Dr. Pringsheim says. "Physicians now all have the same evidence-based information, which should decrease variation in patient care."

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More information about comprehensive behavioral intervention for tics, and what causes Tourette syndrome.