Blinking, clearing your throat, grimacing – diverse symptoms of Tourette’s syndrome

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„I’m going under and this time I fear there’s no one to turn to“ – Lewis Capaldi is singing this line from his world hit “Someone You Love” when the convulsions suddenly begin and his voice fails. „This all or nothing way of loving got me sleeping without you“do the visitors of the Glastonbury Festival in England for him.

Capaldi coughs, jerks his head and upper body. „Now, I need somebody to know, somebody to heal, somebody to have, just to know how it feels“, if he keeps trying, then his voice fails him completely. He twitches uncontrollably.

Tens of thousands of spectators take over for him, a sea of ​​supportive, smiling people. They sing his song to the end. The goose bumps moment was not only visibly close to the Scottish singer. Footage of his performance went viral on social media. A BBC video has already been viewed more than 20 million times.

Capaldi cancels tour, citing Tourette syndrome as the reason

Shortly after his performance, Capaldi announced the end of his tour. He thanked him in that Statement also with the Glastonbury viewers for singing along and the touching messages he received afterwards. “It really means the world to me,” he wrote.

And: “The truth is, I’m still learning to adjust to the effects of my Tourette’s Syndrome. It became clear that I need a lot more time to get my mental and physical health in order.”

But what exactly is Tourette Syndrome?

Don’t yell swear words – Tourette’s syndrome can manifest itself in so many different ways

Tourette syndrome is a neuropsychiatric disorder characterized by the simultaneous occurrence of motor (movements) and vocal (sounds) tics. The syndrome is named after the French doctor Georges Gilles de la Tourette, who first described the symptoms.

According to the German Tourette Society, the symptoms/tics can be broken down as follows:

Motor tics

simple motor tics lead to short, circumscribed movements on only one part of the body
Examples: eye blink, eye roll, wink, sniff, grimace, head shake
complex motor tics are larger or seemingly intentional movements that involve multiple muscle groups
Examples: jumping, hopping, turning around your own axis.
Special forms: copropraxia (showing obscene gestures) and echopraxia (imitating the movements of others), palipraxia (repeating one’s own movements)

Vocal Tics

simple vocal tics are involuntary, unintentional vocalizations that are often not recognized and are dismissed as a habit (allergy, smoker’s cough, asthma).
Examples: hawking, coughing, sniffling, or other nasal and pharyngeal sounds; vocal tics of significant volume (such as screaming loudly) are rare
complex vocal tics are broader or seemingly intentional utterances
Example: atypical use of language, calling out fragments of speech, blocked speech
Special forms: palilalia (repeating self-pronounced words similar to stuttering or speech blocks), echolalia (repeating heard noises or words of others) and coprolalia (pronouncing obscene words/swear words)
Incidentally, coprolalia occurs in only 10 to 20 percent of patients with Tourette’s syndrome and can also occur in other neuropsychiatric and neurodegenerative diseases.

Tip: The Hannover Medical School has published a list with even more specific examples (tics) here

Tourette’s syndrome goes in one Majority (80 percent) of those affected with other disorders associated, especially ADHD and obsessive-compulsive disorder. In addition, depression, anxiety disorders, auto-aggression or impulse control disorders can also occur.

cause and frequency

The exact cause is still unclear. Clusters in families, however, suggest a genetic cause. Experts also assume that there is a malfunction in the control circuit of the brain.

According to expert estimates, around one percent of people develop Tourette’s syndrome. In Germany that would be more than 800,000 people. Boys are affected four times as often as girls. Here, too, the reasons are not yet known.

Typically, symptoms first appear between the ages of six and eight. In almost all cases (99 percent) but before the age of 15. In most people affected, the symptoms improve after puberty and can even disappear completely. But some are affected by it for the rest of their lives.

Diagnose

A diagnosis must always be made clinically. In addition to the occurrence of motor and vocal tics, two other criteria are crucial for the diagnosis:

Tics must last more than a year and present before age 18.

Treatment

A tic is usually preceded by a “anticipation”. This means that those affected feel that the tic is about to begin. So-called behavioral therapies can start here. One of them is the so-called “Habit Reversal Training” (HRT). Those affected practice an alternative movement that is not compatible with the tic, for example by sitting on their hands or tensing the neck muscles so that the head cannot twitch. If they feel the anticipation, they can perform the alternative movement.

Confrontation therapies are also discussed, as well as drugs that are intended to suppress the development of the movement impulse.

Important: Always talk to a specialist doctor about potential treatment strategies.

Does Capaldi really have Tourette’s Syndrome? German expert assumes misdiagnosis

Kirsten Müller-Vahl is a specialist in psychiatry and neurology and senior physician at the Hannover Medical School and has examined over 3,000 people with Tourette’s syndrome herself. “I would not classify the symptoms that I see and hear on the videos as tics and therefore would not diagnose Tourette’s syndrome based on what I see on the recordings,” said the doctor to the editorial network Germany (RND ).

She thinks another mental illness is more likely. “Remote diagnosis is difficult. But what we are currently seeing very often are so-called functional disorders with ‘tic-like’ movements, which are unfortunately often misdiagnosed as Tourette’s syndrome,” she explained. Especially during the corona pandemic, these cases have increased massively.

According to Müller-Vahl, functional movement disorders would occur particularly in patients who suffer from other mental illnesses, such as anxiety disorders or depression. The singer had also reported mental problems and panic attacks.

Other points do not fit in Capaldi’s clinical picture of Tourette’s syndrome:

Movements: “I only see relatively stereotyped, complex, always uniform twitches of the shoulders and head. These types of movements are not typical of tics associated with Tourette syndrome. Tics are primarily localized on the face and especially around the eyes. Tics are also shorter, more abrupt and less uniform.” Course of the disease: “Those affected usually experience the peak of the disease between the ages of ten and twelve. After that, the tics decrease spontaneously in the majority of patients, so that the prognosis is usually favorable and in adulthood there are often only minor tics. A Tourette’s syndrome, which you hardly notice until the age of 25 and then manifests itself with tic attacks, that you even have to stop a song on stage, that kind of thing just doesn’t exist.” “Tourette attacks”: “Tics in the context of a Tourette syndrome vary in type, frequency and severity, with good days and bad days. But seizures are not part of Tourette’s syndrome.”

The difference is that a functional disorder is psychologically treatable, while Tourette’s syndrome is not.