How brain surgery let me "turn off" my Tourette's | Jason Cohen | TEDxNHS

Key Concepts

Tourette Syndrome, tics (motor and vocal), premonitory urge, co-occurring conditions (anxiety, OCD, ADHD, autism), coprolalia, deep brain stimulation (DBS), stun effect, medication (antipsychotics, anti-seizure), stigma, shame, isolation, coping mechanisms, diagnosis, treatment.

Early Onset and Misdiagnosis

Jason recounts the onset of his Tourette Syndrome symptoms at age 3, marked by involuntary hand slamming during a meal. These early tics were initially dismissed as typical childhood behavior. He later developed throat clearing and rapid blinking. Despite his mother's suspicion of Tourette's, the initial GP visit resulted in a dismissive "he'll grow out of it" response, highlighting the challenges in early diagnosis.

The Reality of Living with Tourette's

Jason emphasizes that Tourette Syndrome affects 1 in 100 people in the UK. He describes tics as involuntary movements or sounds preceded by a "premonitory sensation," an urge similar to the feeling before a sneeze but more intense. He debunks the common misconception that everyone with Tourette's swears (coprolalia), noting that it affects less than 20% of individuals. He also highlights the co-occurring conditions like anxiety, OCD, ADHD, and autism that often accompany Tourette's, making daily tasks significantly more challenging.

Impact on Childhood and Adolescence

Jason details the shame and isolation he experienced in primary school, attempting to conceal his tics, which he likens to "stuffing that Cactus inside my jacket." He developed a coping mechanism of suppressing joy to minimize his tics, as excitement exacerbated them. He overheard his mother's friends expressing pessimistic views about his future prospects (employment, relationships, family), which he internalized. Puberty intensified his condition. He faced ridicule and bullying in high school, leading to school absences and ultimately being pulled out of school altogether due to the lack of a formal diagnosis and understanding.

Diagnosis and Medication

At age 13, a decade after his initial symptoms, Jason finally received a formal diagnosis of Tourette Syndrome. He was offered medication, including antipsychotics and anti-seizure drugs (haloperidol, parasan, olanzapine), despite not having psychosis or seizures. He experienced severe side effects from these medications, including restless legs, attention problems, moodiness, and a feeling of "zombification." He describes the healthcare system encounters as "experimental," often finding himself educating healthcare professionals about his condition.

Driving Lesson and Tick Attacks

Jason recounts a pivotal moment when his tics completely disappeared while driving during his first driving lesson, offering a glimpse of hope. However, this remission was temporary. At 19, his condition peaked, with tick attacks lasting from 50 minutes to hours, causing muscle tears and further agitation. He describes the sensation as an uncontrollable itch that intensifies with scratching.

Deep Brain Stimulation (DBS)

Desperate for a solution, Jason researched potential cures online and discovered deep brain stimulation (DBS). He learned that DBS was developed in the late 1980s in France for tremor and Parkinson's disease patients. The procedure involves drilling holes in the brain and inserting electrodes to emit electrical currents to suppress involuntary movements. Despite the lack of guaranteed success and the significant risks, Jason pursued DBS.

DBS Surgery and the "Stun Effect"

Jason underwent DBS surgery, becoming one of the first people in the UK to receive it for Tourette Syndrome. He experienced the "stun effect" post-surgery, a temporary period of symptom remission. For 12 days, he was free from tics and premonitory urges, able to think and act without interruption.

Device Programming and Long-Term Results

After 12 days, his tics returned, but the device programming appointment offered renewed hope. Through trial and error, the medical team found settings that significantly suppressed his tics. He describes the experience of having his brain controlled by a computer as scary. Post-programming, he experienced a newfound awareness and appreciation for his surroundings.

Defying Expectations and Living with Tourette's

Jason emphasizes that the risk of DBS paid off. He now has a fulfilling life with a partner, three children, a career, and friends. He passed his driving test. He concludes by advocating for removing the shame and embarrassment surrounding Tourette Syndrome to promote research and breakthroughs, enabling individuals to live with the condition rather than merely existing with it.

Notable Quotes

• "I am Jason and I have Tourette Syndrome I am the one in a 100 myself in the other 680,000 individuals living with Tourette in the UK"
• "Something that can take you 5 Seconds to do could take someone with Tourette's 10 minutes"
• "I was willing to try anything just to be able to walk to the shops and not get stared out laughed out or reive verbal abuse like what kind of drugs have you been on mate"
• "I took a risk having my surgery remember I let someone put holes in my brain I let someone else with a computer control my brain but the risk paid off"

Technical Terms and Concepts

• Tourette Syndrome: A neurological disorder characterized by repetitive, involuntary movements or vocalizations called tics.
• Tics: Sudden, repetitive, nonrhythmic motor movements or vocalizations involving discrete muscle groups.
• Premonitory Urge: An uncomfortable sensation or urge that precedes a tic, which is relieved by performing the tic.
• Coprolalia: The involuntary utterance of obscene words or socially inappropriate and derogatory remarks.
• Deep Brain Stimulation (DBS): A neurosurgical procedure involving the implantation of electrodes in specific areas of the brain to regulate abnormal electrical activity.
• Stun Effect: A temporary period of symptom remission that can occur immediately after DBS surgery.
• Antipsychotics and Anti-Seizure Medications: Medications sometimes used to manage tics, although they are primarily intended for other conditions.

Logical Connections

The narrative progresses chronologically, starting with the onset of symptoms and the challenges of diagnosis, moving through the impact on childhood and adolescence, the search for treatment, the decision to undergo DBS, the surgery and its aftermath, and finally, the positive outcomes and advocacy for greater understanding and research. The story highlights the importance of early diagnosis, the limitations of medication, and the potential of DBS as a life-changing treatment option for severe cases of Tourette Syndrome.

Synthesis/Conclusion

Jason's story is a powerful and personal account of living with Tourette Syndrome. It underscores the significant challenges individuals face, including misdiagnosis, social stigma, and the impact on education and relationships. While medication provided limited relief and significant side effects, deep brain stimulation proved to be a transformative intervention, enabling Jason to live a fulfilling life. His narrative emphasizes the need for greater awareness, understanding, and research to improve the lives of those living with Tourette Syndrome.