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Tics and Tourette Syndrome Information

What are Tics?

Tics are defined as movements or sounds that are brief, rapid and occur intermittently and involuntarily. Tics are movements or sounds that an individual makes in a habitual, often stereotypical way. They typically present the same way each time performed (stereotyped), with minimal variation. Tics can typically be easily mimicked or can be complex and forceful.  Most classically, a person feels an urge or sensory stimulus that leads him/her to perform the tic.

What types of Tics can occur?

Tics can present in various forms and severities as:

Simple: Occur for less than a second and appear brief and meaningless

Complex: Sustained movement, more purposeful

Examples can include, but are not limited to:

  • Simple Motor Tics: eye blinking, shoulder shrug, nose scrunching, head jerk, etc.
  • Complex Motor Tics: facial expressions, dystonic postures, copropraxia (obscene or offensive gestures), self-abusive patterns, etc.
  • Simple Vocal Tics: throat clearing, coughing sniffing, animal noise, etc.
  • Complex Vocal Tics: repeating phrases, coprolalia (obscene or offensive words), stuttering, repeating others, etc.

Tics wax and wane throughout the patient’s lifespan and can change type or complexity as the disorder progresses. Coprophenomena, or tics that involve typically socially inappropriate words or gestures, are relatively rare. Some children and adults can experience “suppression” of their tics in which they can hold back tics for a short period of time in social situations.  Occasionally, after “suppression” cycles, a patient can notice an increase in tic intensity and frequency.  This is frequently seen for children who are able to suppress their tics at school, then have outbursts and exasperation of tics at home after school.

Types of Tic Disorders based on Diagnostic and Statistical Manual of Mental Disorders (DSM-V-TR)

  • Persistent (Chronic) Tic Disorder: Frequent or intermittent tics that occur “throughout a period of more than 1 year, and during this period, there was never a tic-free period of more than 3 consecutive months”. Can be “simple or multiple motor or vocal tics”, but cannot be both motor AND vocal.
  • Provisional (Transient) Tic Disorder: Frequent tics that occur  “no longer than 12 consecutive months”. Can be “single or multiple motor and/or vocal tics”.
  • Tourette Syndrome: “have two or more motor tics” that have been present, along with at least one vocal tic. Tics occur multiple times a day “usually in bouts”, for a “period of more than 1 year, and during this period, there was never a tic-free period of more than 3 consecutive months”.

Tic Disorder Type

Either Motor OR Vocal

Both Motor and Vocal

Duration

Tic Free Interval

Frequency

Provisional  Tic
Disorder

 √ Possible

4 weeks minimum, 1 year max

Every day during tic periods

Persistent (Chronic) Tic
Disorder

More than 1 year

no more than a 3 month tic-free interval

Occurs frequently/intermittently

Tourette
Syndrome

More than 1 year

no more than a 3 month tic-free interval

Occurs almost daily

The above mentioned disorders are “not due to the direct physiological effects of substance (e.g., stimulants) or a general medical condition (e.g., Huntington’s disease or postviral encephalitis), with an onset before the age of 18. (4)

What causes tics?

Research has shown that tics (not related to injury) are a product of altered function in various areas of the brain.  While the pathophysiology is still partially unknown, there are some clear indicators for causes for tic disorders. Researchers, throughout the world, are still exploring the exact cause/s for a tic disorder.  However, listed below are some of the very brief current theories and research for possible causes and brain matter changes related to tic disorders.

  • Basal Ganglia Dysfunction:  neuroimaging has pointed to abnormalities of the basal ganglia (most notably in the caudate nucleus). However, sizing changes based on studies, have not determined exact impact on tic disorders at this time (3)
  • Cortioc-straiatal-thalamo-cortical (CSTC) circuits and basal ganglia: impaired and disrupted circuits in the part of the brain that disinhibits extraneous movements  leading to malfunction and poor regulation of extraneous movements (1)
  • Frontal Lobe of Cerebral Cortex  changes: this is where planning and executing movements are monitored, as well as complex movement and behaviors (2)
  • Dopamine: high level of the dopamine which acts as a feel good chemical which works in the behavior-reward system of our brain
  • Pediatric Autoimmune Neuropsychiatric Disorders Associated with Steptococcal infections (PANDAS) : This disorder is present with a sudden onset of tics following a bout of frequent “Strep” infections. Related but not linked to cause through research at this point. (2)
  • Genetics: Unable to locate an exact gene, but noted with familial history (2 & 3)

How are tics and Tourette syndrome diagnosed?

Your physician will complete a comprehensive neurological examination and an evaluation of your tics, daily activities, environmental and living situations.  If further testing is needed, an MRI (Magnetic Resonance Imaging) or other neurological imaging might be indicated.

What is Tourette Syndrome?

When tics start in childhood, occur with at least one phonic tic and multiple motor tics, fluctuate over time but last for one year, an individual may meet criteria to be diagnosed with Tourette syndrome.  The condition is named after a doctor who described individuals with symptoms of the condition.

Many healthy, normally developing children may have tics and grow out of them with no intervention.  In fact, most people eventually experience improvement or even resolution of tics, although some can have persistence or progression over time.  While tics may be mild and nonintrusive for some people, in other cases, tics can cause social distress, lead to bullying, or hinder academic or professional success by distracting from attention or physically intruding on reading or writing (ex. Eye blinking tics or tics of compulsive looking to the side).

It is important to know that people with Tourette syndrome very commonly experience co-morbidities that may be as or more disabling than tics.  These can include attention deficit disorder, obsessive compulsive disorder, impulse control or rage difficulties, anxiety or depression.  These need to be screened for and attended to when present and relevant to a person’s quality of life.

What treatments are available?

Pharmacological & Surgical:

  • Medication
  • Deep Brain Stimulation (experimental)

Non-pharmacological:

  • Other rehab services: Occupational, Speech and Physical Therapy
  • Holistic Treatments (not evidenced based): acupuncture, supplements, dietary changes, environmental modifications, massage therapy , etc.
  • Traditional Behavioral Therapy
  • Comprehensive Behavioral Intervention for Tics (CBIT)

Medications for tics most commonly work on a neurotransmitter (brain chemical) called dopamine.  Although the complete pathophysiology of Tourette syndrome is yet to be unraveled, evidence suggests that an overactive dopamine system is a key component.   Medications that block or deplete dopamine make up much of the currently used therapies. The only FDA approved medications for Tourette syndrome in the United States are Haloperidol and Pimozide.  These can be very effective, but desire to avoid potential side effects including tiredness and weight gain or an involuntary movement problem called tardive dyskinesia make some providers look to off label applications of other medications as first line options.  These include Risperidone, Aripiprazole, Fluphenazine, and others.  Central adrenergic inhibitors (alpha-2-agonists)  Guanfacine and clonidine may be used  especially when impulse control and attention are present along with tics.  Sleepiness and low blood pressure are potential side effects.  Benzodiazepines, antidepressants, and even anticonvulsants like Topiramate have some therapeutic role in some cases.

Deep brain stimulation surgery is experimental but promising.  This involves implanting a device that allows electrical pulses to help modify firing patterns deep in the brain, potentially improving tic severity.

What are the prevalence & prognosis of tic disorders?

The majority of the current research indicatea that approximately 3-8% of all school age children suffer from a form of tics.  (2) As tics wax and wane throughout a child’s lifespan, there is an increase in severity/frequency of tics around the age of 9-13 during puberty and adolescent years.  It is important to know that many healthy, normally developing children may have tics and grow out of them with no intervention. In addition, approximately half patients who had tics at a young age are tic free by adulthood with spontaneous improvements in tic severity by age 18. (2)   In fact, most people eventually experience improvement or even resolution of tics, although some can have persistence or progression over time.   Having a tic disorder will not lead to death unless in extreme and rare cases, abusive or self-injurious tics occur and are not managed.

What co-morbid conditions can occur with Tourette syndrome?

It is also important to know that people with Tourette syndrome can experience co-morbidities that may be as or more disabling than tics.  These can include:

  • Attention Deficit (Hyperactivity) Disorder
  • Obsessive Compulsive Disorder
  • Mood Disorders: Anxiety and Depression
  • Autism
  • Behavioral Difficulties
  • Impulse Control/Disinhibition Difficulties

These need to be screened for and attended to when present and relevant to a person’s quality of life. These co-morbid conditions can lead to school or home difficulties such as:

  • Dysgraphia/Handwriting Difficulties
  • Social Skill Limitations
  • Executive Functioning (organization, planning, self-modulation)  Difficulties
  • Attention and Behavioral Difficulties
  • Hyper/Hyposensitivities to touch, sound or taste
  • Sleep Limitations

It is an important part of Tic Disorder management to address co-morbid conditions appropriately to ensure success with work, school and leisure.

What kinds of environmental issues can affect tic or Tourette patients?

Tics related to tic disorders can have large environmental stressors that can lead to possible exasperation or increase in tics for a short period of time.  These environmental influences can be (but not limited to):

  • Stressful situation
  • Stressful environments
  • Anxiety/increased excitement
  • Prior to bedtime
  • Illness or being sick
  • Talking about tics
  • Social Situations

It might be helpful to create a log or mental tally of frequent stressful situations and begin to make environmental modifications and adjustments to ease in managing one’s tics.

Who should I contact if I have tics or Tourette syndrome?

Tics and Tourette syndrome may be managed by neurologists or psychiatrists in addition to some primary doctors who have comfort and experience in this area.  It is important to have good patient and family education to be aware of all the therapeutic options (including no treatment when appropriate).  The Tourette Syndrome Association is a another great resource for educational materials online.

References: 

1. Woods D, Piacentini J, Chang S, et al (2008) Managing Tourette Syndrome; A Behavioral Intervention Parent Workbook. New York; Oxford University Press

2.  Walkup J, Mink J & McNaught K (Ed.) (2012) A Family’s Guide to Tourette Syndrome. Bloomington; iUniverse, Inc.

3. Bruun R, Erenberg G & Leckman J (unknown) Guide to the Diagnosis & Treatment of Tourette Syndrome.

4. Center for Disease Control-CDC (2015) Tourette Syndrome.  Retrieved from: http://www.cdc.gov/ncbddd/tourette/diagnosis.html