What is Tourettic OCD (TOCD)?
Imagine this: You’re twisting a bottle cap, but something feels off. You can’t put it down until the tension in your hand settles into a sensation that feels “just right.” It’s not just about the movement—it’s about easing that nagging, uncomfortable feeling in your body (Mansueto & Keuler, 2005). This is a glimpse into what living with Tourettic OCD (TOCD) might feel like.
For some, tics and compulsions exist separately as symptoms of Tourette Syndrome (TS) and obsessive-compulsive disorder (OCD). However, for others, these experiences intertwine, creating a "grey zone" where behaviors don’t neatly fit into TS or OCD categories. This overlap can lead to confusion and misdiagnosis, with individuals being told they “just have tics” or “just have compulsions,” which doesn’t fully capture their experience (Mansueto & Keuler, 2005).
Although TOCD isn’t officially recognized in the DSM-5, researchers and clinicians are increasingly acknowledging it as a distinct condition. If you or someone you know exhibits both tics and compulsions, TOCD might be the key to understanding these intertwined behaviors (Katz et al., 2022).
What is TOCD and Who Does It Affect?
TOCD typically emerges earlier in life and is more common in boys than girls (Katz et al., 2022). Unlike traditional OCD, individuals with TOCD are less likely to engage in compulsions like checking, cleaning, or seeking reassurance (Katz et al., 2022). Instead, they often display behaviors such as rubbing, tapping, or touching, which are usually linked to a need for symmetry or a sense of exactness (Katz et al., 2022).
In TOCD, the uncontrollable movements characteristic of TS blend with the ritualized actions of OCD, resulting in a unique mix of behaviors (Katz et al., 2022). For example, someone might feel the urge to tap their finger on a table—a tic-like movement—but continue tapping until everything feels balanced or “right.” Alternatively, they might repeat a word not out of fear, but simply because saying it once doesn’t alleviate the tension in their body (Mansueto & Keuler, 2005; Katz et al., 2022).
What Connects Tourette Syndrome and OCD?
The overlap between TS and OCD is more common than you might think. Research indicates that about 60% of people with Tourette Syndrome also experience OCD symptoms, nearly 50% of children with OCD have tics, and around 15% of kids with OCD meet the criteria for TS (Mansueto & Keuler, 2005). Understanding this connection helps clarify the nuances of TOCD.
Tourette Syndrome (TS) involves involuntary tics—movements like blinking, shoulder jerks, or sounds like throat clearing (Lombroso & Scahill, 2008). These tics are often preceded by a premonitory urge, a physical discomfort that compels the tic to relieve it (Lombroso & Scahill, 2008). This urge is purely a physical sensation without a specific fear or thought behind it (Katz et al., 2022).
Obsessive-Compulsive Disorder (OCD), on the other hand, is driven by intrusive thoughts (obsessions) that generate anxiety (Lombroso & Scahill, 2008). Compulsive behaviors are deliberate attempts to reduce this anxiety, such as excessive hand-washing to avoid germs or repeating phrases to prevent something bad from happening (Lombroso & Scahill, 2008).
Both conditions involve a sense of discomfort before the behaviors occur (Katz et al., 2022). In OCD, the discomfort is tied to anxiety, while in TS, it’s a physical or sensory urge (Katz et al., 2022). Repetitive actions in TS are mostly involuntary and require significant effort to suppress, whereas compulsions in OCD involve conscious thought and intention (Katz et al., 2022). Additionally, the brain circuits involved in both TS and OCD share notable similarities (Katz et al., 2022; Mansueto & Keuler, 2005).
However, TOCD isn’t just a simple mix of TS and OCD—it’s a unique experience where behaviors fall somewhere in between. For instance, the discomfort driving a TOCD behavior is often physical or sensory, like tics, but the actions taken to resolve it—such as repeating a motion or touching an object “just right”—resemble OCD compulsions (Mansueto & Keuler, 2005).
How TOCD Behaviors Show Up
In TOCD, the primary goal isn’t to avoid danger or neutralize fear, as in OCD. Instead, it’s about relieving discomfort, which can feel overwhelming, like a buzzing energy or pressure in the body that only the right action can resolve (Katz et al., 2022). Here are some real-life examples of TOCD behaviors:
Repeatedly turning a light switch on and off until the sensation feels “just right.”
This behavior resembles a tic but focuses on achieving sensory relief, indicating a compulsive aspect of TOCD.
Saying a word like “Top” after saying “Bottom” to counteract discomfort.
This combines OCD’s compulsive rituals with TS-like tics, driven by the need to relieve discomfort rather than fear.
Pressing a button or locking a door repeatedly to achieve a specific feeling or sound.
While this may appear as a tic, it involves a compulsive drive to resolve discomfort or attain a “just right” sensation.
Such behaviors can make daily routines frustrating or exhausting, especially when the urge to get it “right” interrupts tasks or relationships.
The Emotional Weight of TOCD
Living with TOCD is challenging. The premonitory urge—the uncomfortable sensation before a behavior—can be hard to ignore, and resisting it often leads to increased discomfort (Mansueto & Keuler, 2005). Combined with the repetitive nature of the actions, TOCD can significantly interfere with everyday life.
Many individuals with TOCD also feel misunderstood because their behaviors don’t fit neatly into one category. This can lead to misdiagnosis, resulting in inadequate support or treatment (Mansueto & Keuler, 2005).
How Can You Tell if It’s TOCD?
If you’re wondering whether you or a loved one might be experiencing symptoms of TOCD, it can be helpful to take a moment to reflect on some key questions. These questions can provide valuable insights into your thoughts and feelings and may serve as a starting point for a deeper conversation with a therapist. Consider exploring these questions together to better understand your experience and identify the support you might need.
Do you experience repetitive behaviors or tics that feel uncomfortable or “not quite right” until you complete them?
Do these actions become more intense or harder to resist, even when you try to stop?
The urge to perform a tic has often been compared to the sensation of an itch you can’t scratch. It brings a persistent feeling of “I need to get rid of this” (Mansueto & Keuler, 2005).
Do you feel compelled to repeat actions because of physical discomfort or a sensation of unease in specific body parts, such as your fingers, hands, or head?
Have you noticed a connection between your tics or compulsions and a sense of physical relief in your body after completing the action?
For example, you might feel compelled to repeatedly turn the ignition key in your car to relieve an uncomfortable pressure in your fingers (Mansueto & Keuler, 2005).
Have these symptoms been present since childhood or adolescence, or did they begin suddenly in adulthood?
By reflecting on these questions, you may gain a clearer understanding of your experiences, which can be valuable when seeking support from a therapist.
Why Awareness Matters
Understanding TOCD and how it differs from TS or OCD alone is crucial for obtaining the right diagnosis and support (Katz et al., 2022). Managing TOCD often requires a combination of therapies tailored for both OCD and TS. For instance, OCD treatments typically focus on managing intrusive thoughts and reducing compulsive behaviors through cognitive and behavioral strategies, while TS treatments often address tics with behavioral techniques or medications (Katz et al., 2022).
Misidentifying TOCD as only one condition can lead to incomplete care, leaving some symptoms unaddressed. Properly identifying TOCD ensures a more personalized and effective treatment approach, enhancing the individual’s ability to manage symptoms and improve their quality of life (Katz et al., 2022).
In our next post, we’ll explore treatment options for TOCD, including strategies to manage both tics and compulsions. Whether it’s therapy, mindfulness, or medication, there are ways to find relief and regain control.