Going Viral: Social Media May Be Increasing Cases of New-Onset Tics

This transcript has been edited for clarity.

Kathrin LaFaver, MD: Hello. I'm Dr Kathrin LaFaver, a movement disorders specialist at Northwestern University here in Chicago. It is my great pleasure today to interview Dr Tamara Pringsheim on the topic of acute-onset explosive tic-like behaviors. Dr Pringsheim is an associate professor in the Department of Clinical Neurosciences, Psychiatry, Pediatrics and Community Health Sciences at the University of Calgary. In addition, she is the lead for the Tourette and Pediatric Movement Disorders program at Alberta Children's Hospital and the deputy director of the Mathison Centre for Mental Health Research and Education. Dr Pringsheim, thank you so much for speaking with us today.

Tamara Milka Pringsheim, MD: Thank you very much for inviting me.

LaFaver: This topic of seemingly new-onset tic-like behavior has really sparked a lot of interest over the past several months. Many neurologists, especially pediatric neurologists, have noted an increased number of patients presenting with the explosive onset of complex tics over the past year. Can you tell us more about this?

Pringsheim: At our center in Calgary, we started seeing a number of adolescent girls presenting to the emergency room or for urgent assessment with the rapid onset of complex motor and complex vocal tic-like behaviors, starting in October 2020. In approximately 70% of these cases, there was no prior history of tics.

The tic-like behaviors develop rapidly over the course of hours to days. The level of disability was extremely high, with many of these young people unable to attend school due to the severity of their symptoms and some even requiring hospital admission.

Subsequent discussions with colleagues in the United States, the United Kingdom, Europe, and Australia revealed that they all were seeing comparable cases with striking similarities in the phenomenology of these tic-like behaviors. Since October, the number of cases has continued to grow, and we are also seeing an increasing number of young adult women with similar symptoms.

Why It's Different From Tourette Syndrome

LaFaver: Some of these behaviors and tic-like movements don't seem to quite fit the typical clinical profile of patients with Tourette syndrome. What do the key differences seem to be?

Pringsheim: We've distinguished two subtypes of these rapid-onset cases. The majority present with the first-ever onset of complex motor and vocal tic-like behaviors, and some have a previous history of typical mild, simple motor, and vocal tics and suddenly developed severe complex tic-like behaviors.

The first-onset explosive complex tic-like behavior cases are different from those in our Tourette syndrome population in many aspects. First, the age of onset is significantly older. Children with Tourette syndrome typically have onset of their tics at a mean age of 6. In these rapid-onset cases, the age of onset is older, between 12 and 25 years.

The sex distribution is also very different. We usually see three to four boys with Tourette syndrome for every girl. In the rapid-onset cases, 95% of the cases we've seen so far are in girls or young women.

The evolution of tic symptoms is very different in these rapid-onset cases compared with children with Tourette syndrome. In Tourette syndrome, children usually start with simple motor tics of the face, and often in early childhood have one or two tics at a time that change in character over a period of weeks to months. Complex motor and complex vocal tics develop over a period of years and rarely occur in the absence of simple motor or simple vocal tics. Many people with Tourette syndrome never develop complex vocal tics, and the most common vocal tics we see in practice tend to be sniffing, throat clearing, coughing, or grunting.

In the rapid-onset cases, the majority of tic-like behaviors we are witnessing are complex, with large-amplitude movements resulting in self-injury or directed toward other people, and complex vocalizations consisting of the repetition of random words, as well as coprolalia in the majority of cases. Many of the same words and phrases are in common between patients.

There's also great variability between rapid-onset cases with respect to the presence of premonitory sensations, suppressability, suggestibility, and distractibility, which are core features of tics. Most patients in the rapid-onset cases note the suggestibility and the distractibility, but it's about a 50/50 distribution when it comes to those experiencing premonitory sensations and being able to transiently suppress tics.

Finally, the comorbidity profile of the rapid-onset cases differs. A relatively larger proportion of these young people have comorbid anxiety and depression, in contrast to attention-deficit/hyperactivity disorder or obsessive-compulsive disorder, which are the most frequent comorbidities we see in youth with Tourette syndrome.

In some of the children, there is a family history of neurodevelopmental disorders. Many of our patients report psychosocial stressors at the onset of their symptoms, some related to pandemic lockdowns and social isolation, school or exam performance, or concerns related to parental acceptance of their sexuality or gender identity.

In the second subtype, where there's a previous history of simple motor and vocal tics, the age and sex distribution is similar to the rapid first-onset cases, as is the phenomenology of tic-like behaviors.

Is Social Media Triggering New-Onset Tics?

LaFaver: I understand that some have labeled this new-onset tic-like behavior "TikTok tics." Could you elaborate a bit on the role of social media here?

Pringsheim: When we started seeing these cases, we began looking for a common disease model to explain the similarities in phenomenology we were observing. For example, I have seen six people in the past 4 weeks who are saying the same low-frequency word as one of their complex vocal tics. In the previous 20 years, I have not seen a single patient with this specific word as a tic.

So I started looking at YouTube, but my teenage daughter brought to my attention the videos on TikTok assembled under the theme of Tourette syndrome. There are hundreds of videos of tics and tic-like behaviors posted by young people from all over the world, with some accounts having millions of followers and views. During the pandemic, TikTok reported a tripling in their number of active viewers.

We believe that these TikTok videos may be a trigger for functional tic-like behaviors on the basis of a disease-modeling mechanism, and also be a trigger for tics similar to the echophenomena that we frequently observe during social gatherings of people with tics.

Pandemic-related psychosocial stressors may be acting as a crucial second hit, which triggers the clinical expression of symptoms in susceptible individuals, with social and environmental reactions to symptoms inadvertently reinforcing or intensifying them.

Diagnostic and Treatment Strategies

LaFaver: For a neurologist in practice encountering a patient with these sudden-onset tic-like movements, what additional investigations do you suggest?

Pringsheim: The key to the diagnosis is a careful history of the onset and evolution of the tic symptoms and any associated mental health symptoms. Many of our patients have identified TikTok and other people with tics as a trigger for them. So it is important to discuss social media use and whether there are any friends or family members affected with tic-like behaviors or Tourette syndrome.

A careful neurologic examination should be performed. We have not been routinely performing neuroimaging in patients with a consistent presentation and a normal neurologic exam.

LaFaver: That is very helpful and hopefully reassuring for many neurologists seeing these patients. After a diagnosis is made, what should the next steps be? How do you specifically approach treatment for these patients?

Pringsheim: The level of disability experienced by young people with these rapid-onset tic-like behaviors is extremely high. If I were to compare side by side, I would say that for many, the level of disability associated with these tic-like behaviors is higher than it is for most of my patients who have a diagnosis of Tourette syndrome.

As this clinical entity is so new, we have not yet collected data systematically on the treatment approach or outcomes. We have been recommending first-line treatment with the comprehensive behavioral intervention for tics, which consists of habit-reversal therapy and a functional intervention to minimize triggers and reinforcing factors. We have also been recommending cognitive-behavioral therapy and/or medication for comorbid anxiety and depression if present.

We spend time discussing functional neurologic symptoms and how these tic-like behaviors may be a physical manifestation of the extreme psychosocial stress, anxiety, social isolation, and loneliness affecting millions of people worldwide during COVID-19. We also discussed echophenomena in people with tic disorders and how social media exposure may be triggering tics.

LaFaver: That resonates well with my own experience of seeing some of these patients. Hopefully, raising awareness of this issue will help other neurologists to recognize and manage these patients appropriately. Thank you again so much for the interview today, and thank you, everyone, for listening.

Pringsheim: Thank you.

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