The Trials of Living With Tourette Syndrome

The Trials of Living With Tourette Syndrome
Doctors and therapists hope to bring relief to those with the odd condition.PlayCourtesy Kyle Lee
WATCH '20/20' Full Show: Teens Take on Tourette's

Kyle Lee was "pumped up" to see his idol Sylvester Stallone in "The Expendables" on opening weekend. But just 20 minutes into the Saturday evening screening, after he and his girlfriend settled into their seats with popcorn and drinks, the theater manager asked Lee to step outside. The manager had received a dozen complaints about Lee's verbal and physical tics.

Lee, 28, who has struggled with Tourette syndrome since age 7, had gone out of his way to choose seats to the side of his local theater in Wichita, Kan.

"I do that to be courteous. I do have a disability," he said. He recalls having perhaps three bouts of twitchy tics and throaty clicks during those opening minutes, but thought they would be drowned out by the loud action film.

After Lee pleaded his case, the manager apologized and then gave him a choice: watch from the smudge-windowed "cry room" where mothers soothe and breastfeed crying babies, or take his chances with the 10 p.m. screening and see if people would complain again.

Irate and disappointed, Lee asked for his money back, telling his equally incensed girlfriend, "Honey, just get the car ready."

Retelling the story a month after the incident still angers him: "This isn't the first time this has happened to me." When Clint Eastwood's "Gran Torino" came out, "I got kicked out of the exact same theater."

These humiliations cap 21 years of trying to prove himself in high school sports while being forced into special education classes despite testing high enough for regular classes.

As an adult, he's been unable to land full-time work: "Every time I go to apply, they see me 'tourette,'" he says. Today he works as a handyman.

Tourette Today: More Acceptance, But Also More Shunning

Doctors and therapists are working to help those suffering with Tourette syndrome to get relief from the verbal and physical tics that characterize the neurological condition. Those with Tourette uncontrollably spew words, guttural sounds, barks, or throat clicks, and rapidly, repetitively move their heads, necks, arms, or legs in ways that can be distracting to others. Only a minority suffer from coprolalia, the involuntary cursing often misperceived as a frequent Tourette symptom.

Today, more of the estimated 200,000 Americans with Tourette participate in school and mainstream activities, thanks in part to better education about the disorder, which has been portrayed in a variety of movies, television shows and news programs. "Tourette Uncovered," a documentary airing on Discovery Health Channel on Monday, portrays four children coping with varying degrees of symptoms -- ranging from annoying to disabling -- and trying to overcome the associated stigma.

A particular tic "may wax and wane in its severity and frequency, it may change in location, and that in part contributes to the mystery of Tourette syndrome," Dr. Cathy Budman, director of the Movement Disorder Center in Psychiatry at North Shore University-Long Island Jewish Health System in Manhasset, N.Y., says in the documentary.

The syndrome was named for Dr. Georges Gilles de la Tourette, a French neurologist who diagnosed it in an elderly French noblewoman in 1885 and tried treating it with isolation, tonics, hydrotherapy and static electricity. Tourette usually appears before the age of 18 and is three to four times more common in boys than in girls. There is no laboratory test to confirm it; instead, diagnosis is made by observation over time.

Where Do the Tics Come From?

Most of Tourette syndrome is inherited. Tics occur along a spectrum, so mom or dad might have mild tics that went unrecognized. Researchers worldwide have been studying families to pinpoint what they suspect are multiple genes responsible for the disorder, and then identify environmental factors that cause only some people to express Tourette syndrome.

There have been published and controversial suggestions that Tourette may be partly rooted in infections with Streptococcus bacteria, which trigger immune system changes, according to a review study led by Dr. James Leckman, from the Yale Child Study Center in New Haven, Conn. It was published in a special August issue of the Journal of Child and Adolescent Psychopharmacology devoted to Tourette and obsessive-compulsive disorder.

What Can Be Done?

Medications: In many cases, Tourette occurs in tandem with two other neurological conditions, obsessive-compulsive disorder and attention deficit hyperactivity disorder. Some doctors prescribe antidepressants for OCD, and drugs like Adderall or Ritalin for ADHD. Only limited medications seem to ease the tics, among them, the blood pressure drug clonidine (Catapres), and the antipsychotics pimozide (Orap) and haloperidol (Haldol), both of which have side effects such as weight gain, sedation, tremor and jerky movements called tardive dyskinesia.

One of the novel antipsychotics, aripiprazole (Abilify), has been shown to suppress tics and control behavioral symptoms in a two-month study reviewed in the special theme issue of the Journal of Child and Adolescent Psychopharmacology. Even nicotine gum has yielded improvement, but it "lasted no longer than 1 hour after chewing," according to an overview of Tourette and tic treatments in the same issue.

Behavioral therapy: Many families have tried behavioral therapy, which teaches Tourette sufferers to manage their tics, or suppress them temporarily to function better at school or work. This can be done with a technique called habit reversal, which substitutes another behavior that competes with the tic, such as rhythmic breathing or deliberately lengthening muscles contracted during repeated shrugging.

Self-hypnosis: In July, Dr. Jeffrey E. Lazarus of Palo Alto, Calif., published an article in the Journal of Developmental & Behavioral Pediatrics, describing 33 children and teens he instructed in self-hypnosis to manage tics. Although he reported that the majority were able to get some control over their tics, his data didn't demonstrate long-term results, nor has self-hypnosis been subjected to a randomized, double-blind clinical trial. Nevertheless, parents may be drawn to it because it is non-invasive and doesn't involve medication.

Psychotherapy: Therapy can help sufferers deal with the social and emotional ramifications of suffering from a stigmatized disorder.

Experimental Treatments

Deep brain stimulation: Some families have turned to deep brain stimulation to temper tics. In the case of Jonah Hinds, one subject of the television documentary, DBS reduced, but didn't eliminate, them. With DBS, tiny electrodes are placed inside various regions of the brain to regulate electrical activity. But to date, "there is no consensus about patient selection, stimulation target, or stimulation setting," according to an article on tic suppression in the special journal issue. Surgical complications included bleeding near the tip of the stimulator lead, poor scar healing and infection; complications from the stimulation included eye changes, vertigo, fatigue, mood changes, nausea, and sexual dysfunction.

Non-invasive transcranial stimulation: This technique places a magnetic coil over the scalp and then provides magnetic pulses that have shown promise in depression, More studies are needed, according to the review article on tic suppression.

In case you're wondering whether Kyle Lee ever managed to see "The Expendables" all the way through, here's your answer. A week after being asked to leave the theater, he says, "I went to the drive-in." But the avid fan, who has posters at home of Rocky Balboa and dressed as him for Halloween, has one unfulfilled wish: to share his story with the film hero whose own tribulations include having an autistic son and a daughter who underwent open-heart surgery within months of birth.

"It's been a dream of mine to meet the guy."

For more information, visit the Tourette Syndrome Association website at