In July 2019, Pennsylvania added Tourette syndrome to the list of conditions that qualify for medicinal cannabis use. Contributor Lorena Cupcake explains what Tourette syndrome is and looks at the place of cannabis when it comes to Tourette syndrome, using their own experiences as a medical cannabis patient.
Tourette Syndrome Awareness Month is recognized from May 15th to June 15th each year, inspiring some of the estimated 100,000 people living with Tourette Syndrome nationwide to share their stories with the hashtag #TouretteAwarenessMonth. As a medical cannabis patient — qualified due to my diagnosis — I’m sharing my experiences managing my condition with cannabis to help fill in the gaps in a field with little published research.
The research of neurology is hindered by the limitations of non-invasive techniques; my brain may only reveal some secrets after I’m dead. I’m telling my story while I’m still here so the conversation on the future role of cannabis in treating Tourette Syndrome can grow and gain momentum, leading to more high-quality studies, a better understanding of the behind-the-scenes biological functions, and increased access to decriminalized cannabis. Currently, only seven states including Arkansas, Illinois, Minnesota, Missouri, New Jersey, Pennsylvania, and Ohio have specifically approved Tourette Syndrome as a condition for medicinal cannabis use.
According to the National Institute of Neurological Disorders and Stroke, Tourette syndrome (often shortened to TS, or Tourette) is a neurological disorder characterized by involuntary movements and vocalizations known as “tics.” Every human experiences involuntary actions; we cringe when embarrassed, yelp when startled, and reflexively snatch our hands away from hot surfaces. These types of unconscious reactions are governed by the nervous system, which is divided into the sympathetic nervous system (SNS) and parasympathetic nervous system (PNS).
To understand why people with TS have tics, and how cannabis may help with both tics and related medical conditions, it’s important to know the difference between the two divisions and the role in their body.
Fight, flight, or freeze
The SNS is most famously associated with “fight, flight, or freeze,” three evolutionary responses to danger tracing back to the caveman days. While this system can keep us out of danger, it’s overactive in people with TS, causing uncomfortable symptoms of anxiety, like rapid heartbeat, skin tingling, and chest tightness. The pressure builds unbearably until it’s released with an involuntary movement. Suddenly, there’s a wave of relief … until the pressure returns.
It’s a cycle familiar to anyone with neurobiologically similar conditions like Obsessive-Compulsive Disorder (where the relief comes from giving in to a compulsion) or body-focused repetitive behavior disorders (which include conditions like Trichotillomania, a condition also called “hair-pulling disorder” by the Mayo Clinic). It’s important to realize that people with these medical issues aren’t simply lacking willpower; the basal ganglia, which would normally send inhibitory signals to suppress unwanted behaviors, isn’t functioning as effectively as it would in a neurotypical brain.
Pharmacological treatments for TS usually focus on suppressing dopamine, a messenger molecule your neurons use to initiate movements, both voluntary and not. I’ve personally had better results from cannabis, which has helped me learn to control and, more importantly, comfortably cope with tics through activation of the PNS.
Rest and digest
The parasympathetic nervous system, which slows the heart rate, increases saliva production, and stimulates the digestive tract, is nicknamed the “rest and digest” response. Many techniques exist to help activate this system, including mindfulness, meditation, and stimulation of the vagus nerve.
This 2017 Iranian journal details how the endocannabinoid system modulates the release of GABA, a neurotransmitter with receptors found throughout the parasympathetic nervous system with the ability to decrease blood pressure, reduce stress, and stimulate appetite. Rather than directly blocking tics, the right type of cannabis-based product puts me in a relaxed state where tics are less likely to occur, easier to control, and less uncomfortable to endure.
Recognizing the importance of accessibility to this treatment, numerous states have approved medical marijuana as a treatment for TS. The key to gaining acceptance nationwide may lie in raising awareness of the many biological similarities between a relatively-rare syndrome and more well-known disorders that are widely recognized to be effectively regulated with cannabis.
Cannabis and movement
Movement disorders are neurological conditions that affect the ability to control movement. There’s evidence that cannabinoids produced naturally by the body assist in motor control, and that dysfunction of the endocannabinoid system plays a role in the pathophysiology of movement disorders like Parkinson’s Disease.
An anonymous survey conducted by the Prague Movement Disorder Centre found that one-quarter of the respondents had tried cannabis, with 45.9% of them going on to describe some sort of benefit. “Once I started taking CBD oil, I never had a sleepless night because I couldn’t relax my muscle groups,” septuagenarian Garry Griffin told CBD Denver following his participation in a University of Colorado study on the use of cannabidiol oil in patients with Parkinson’s Disease. “I’m not a stoner, but I am a proponent.”
The basal ganglia, mentioned earlier for its role in regulating unwanted movement, contains many endocannabinoid receptors. When cannabinoids bind with these receptors, they can help alleviate involuntary movements by assisting in the regulation of neurochemicals linked to signaling and movement.
Tics respond well to cannabis, with 82% of participants in a 1998 German study reporting improvement and one patient remaining symptom-free for an entire year. What’s missing is research that clearly explains the full role of cannabinoid receptors and the endocannabinoid system (ECS) in TS pathology and treatment, along with education, therapies, and medications that utilize those findings.
The potential of cannabis to calm spasticity, tremors, muscle tightness, muscle jerks, and pain associated with disorders like dystonia, epilepsy, and restless leg syndrome is documented, allowing insight into the significant biological impact of marijuana on movement. Until larger and more through studies can take place, the positive experiences with cannabis reported by many people with Parkinson’s, TS, and other movement disorders suggests that we have more to learn about the role of the ECS in governing movement.
Life on the spectrum
Tourette Syndrome is a spectrum disorder or a collection of conditions that share traits and characteristics. There are only so many different regions of the brain; only a limited array of neurochemicals used by the nervous system. Brain abnormalities and neurotransmitter dysfunction will often express themselves in diverse ways, with symptoms that may be associated with a range of different conditions.
People on the Tourette Syndrome Spectrum have much higher rates of Obsessive-Compulsive Disorder (OCD), Autism Spectrum Disorder, and learning disabilities like Attention-Deficit/Hyperactivity Disorder than the general public. They’re also more likely to have anxiety, personality, and mood disorders. Even if someone doesn’t qualify for dual diagnosis, they may still experience some symptoms; the reverse can be true for those with a primary diagnosis other than TS. For example, up to 50% of children with OCD experience tics.
Although these conditions are often considered separate, they share underlying biological mechanisms that link them together, which explains why cannabis may be beneficial in regulating all of them.
Over the past couple of decades I’ve been living with TS, I’ve used cannabis alongside cognitive-behavioral techniques to cope. Cognitive-Behavioral Intervention for Tics (CBIT), a type of Habit-Reversal Training, teaches people with TS to identify the premonitory urges that come before a tic. They can then choose a low-impact and easy-to-disguise movement — like squeezing a fist— over tics that can be distressing, painful, or stigmatized.
Suppressing tics can be frustrating and physically uncomfortable, so I’m grateful to have a way to “get them out of my system” while minimizing unwanted attention and avoiding tics that might be dangerous or harmful. At the same time, daily cannabis use relaxes my body, reduces my anxiety, and balances my mood, making it easier to consciously activate my PNS and less stressful to manage my tics.
I’ve learned to accept that life on the Tourette Syndrome Spectrum means that every symptom is a puzzle piece that helps me figure out how and why my body works as it does. Cannabis doesn’t just improve my quality of life; it helps me gain insight into, and control over, the two divisions of my central nervous system.
Featured image by Gina Coleman/Weedmaps