I Have Tourette Syndrome And CBiT Changed My Life

By the time things were bad enough to pipsqueak, “Mom, I think something is wrong with me, I think I need to see a doctor,” things were very bad indeed.

Jul 26, 2014 at 11:00am | Leave a comment

When you’re an anxious child who is generally either reading a book or hiding under a table and sobbing, it’s pretty easy to dismiss your own weird behavior as a collection of childlike quirks.
 
Everyone locks themselves in the bathroom to hop up and down for five minutes when their often angry mother pulls in the driveway, right? Everyone blurts “I wish I was dead, I wish someone would kill me” when they make a mistake? Right? 
 
By the time things were bad enough to pipsqueak, “Mom, I think something is wrong with me, I think I need to see a doctor,” things were very bad indeed. Bad enough that I was crumpling to the ground, legs limp, unable to breathe or open my eyes. Bad enough that I was punching concrete walls and tearing off my clothing. Bad enough to put a petite teenage child with no symptoms of delusions on extremely heavy antipsychotics.
 
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The author, the year Tourette Syndrome was first diagnosed.

The (very) basic neurological mechanics of Tourette Syndrome involve a brain that produces an excess of dopamine and has difficulty regulating it. In a normal brain, you think, "I'd like to pick up that apple," and your brain shoots off a paltry little dose of dopamine that has a message attached to it: "Raise arm, close fist, lift apple." If you have TS, it's like having a defective firehose for dopamine receptors.
 
My brain randomly shoots off large doses of dopamine with absolutely no message attached, and my body picks the easiest way to burn it off, something completely random, or an action I've performed many times before, or saying a word from my ever-changing-lexicon of swears and nonsense.
 
You've probably experienced how that burst of dopamine feels. The best way I can think to describe it is "shuddering revulsion."
 
Have you ever been walking along the sidewalk, and out of the corner of your eye you realize you are about to plant your Converse directly into the rotting corpse of an unfortunate cat or squirrel? Chances are you staggered backwards, your skin crawling, your heart racing. Chances are your thought process was not very long or complicated, just "get the hell away."
 
That is how the "oncoming urge" feels: restless, twitchy, shivery, every nerve alive and blazing and alert, uncomfortable, breath sped up, heart rate up.
 
Over the years, I've gotten better at feeling the burst of dopamine before I perform the action, but I don't always. Have you ever absent-mindedly grabbed the handle of a blazing hot pan on your stovetop? Before you had time to think "this is hot" or "that was stupid" or "I need to move my hand," you jerked your hand away, instantaneously, without thought.
 
That is how it is possible for someone with TS to perform an action without being fully aware that they are doing it. Half the time I don't know what word is coming out of my mouth until I hear it.
 
I can choose to hold a tic in, on occasion. But the feeling like my chest cavity is imploding never goes away unless I allow myself to release it. Struggling against the tics is exhausting, and the many medications I tried never eliminated my tics. They simple sedated me, took away my sex drive (quite a feat considering what a horndog I am), and made me incapable of keeping meals down while paradoxically gaining weight.
 
I eventually phased out the pharmaceutical measures and resorted to the wishful thinking of checking ClinicalTrials.gov and crossing my fingers before opening the Tourette Syndrome Alliance’s email newsletter (the punnily named Weekly Tic-er), hoping something besides medicine would save me from struggling against my symptoms for the rest of my life.
 
Deep brain stimulation? Perhaps a prescription that uses the scientifically-proven effects of nicotine on TS without the addictive properties, or a drug that doesn’t ruin my life with side effects?
 
One day, The Weekly Tic-er mentioned that the TSA had recently participated in presenting a two-day presentation to psychiatrists, neurologists, psychologists and other medical professionals on a new treatment for Tourette Syndrome called Comprehensive Behavioral Intervention for Tics, or CBiT.
 
This announcement set off a flurry of frantic research in the hopes that I’d discovered a panacea for my disorder. I was disappointed when I realized this cutting edge treatment that doctors could cockily master the concept of in two days was something I’d been painfully working out alone for years, ever since I was that scared teenage girl finally admitting to myself that something was very wrong with me.
 
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The author with kiddie pool

Photo credit: Most Exalted

Remember when you were a teenager, and the most profitable pastime you could come up with in your boring hometown was loitering? We did our loitering outside McDonald’s, smoking endless cigarettes bathed in the sour-sweet stink of gummy ketchup baking inside hot trash cans. If a friend with a car came, we could relocate to the more glamorous environs of the 24-hour Denny’s, to supplement our strength for loitering with bitter coffee and half-eaten meals stolen off neighboring tables.
 
Morgan was a guitarist in a local industrial-metal band with a lead singer who looked exactly like a Marilyn-Manson-themed drag queen. He had been my confidant throughout the escalation of my symptoms. We were smoking aimlessly, watching my right hand jerk itself up as if pulled by invisible puppet strings, then curl into a fist and smash into the concrete table in front of me, over and over.
 
“I think it might be Tourette Syndrome,” I said in a small voice, using the term for the first time. I had doctor’s vague confirmation that I had a nervous tic disorder, but no one had yet been willing to apply a definite diagnosis.
 
He watched my fist punch into the concrete between us with a crack, yet again. “Dude,” he said sympathetically, “I don’t know what else it could be.”
 
Rubbing my bruised knuckles, I decided that the next time I felt the urge to punch the table swelling inside me, I would simply tap my fingers on the table instead. It worked. The dopamine released by my brain still had an outlet, avoiding the frustration and physical discomfort caused by suppressing a tic; but my knuckles remained unbloodied.
 
Slowly, I began working out other ways to replace tics with smaller, similar actions that weren't as stressful to my body or as noticeable to judgmental strangers.
 
Instead of throwing items I had in my hand when the urge struck, I began slamming them down just a bit more forcefully than necessary. I began replacing the curse words I was screaming with gasps, throat clearing, and fake coughs. And in job interviews, I disguised my nervous ticcing behind common gestures like squeezing a hand in my lap or shaking my bangs out of my eyes.
 
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The author with bike

Photo credit: Most Exalted

Comprehensive Behavioral Intervention for Tics is based on training patients with Tourette Syndrome to practice these “competing responses” to their tics. But instead of being a skill a professional taught me, it was something I intuitively figured out.
 
I think most humans, not just those with TS, could benefit from making mindfulness of their brain’s triggers a daily practice in their lives, and consciously choosing alternate actions when their brain’s natural impulses work against your health and happiness.
 
CBiT and other forms of Cognitive Behavioral Therapy have remapped my brain, and allowed me to channel my most destructive and societally stigmatized tics into behavior that allows me to fit into a society that privileges passing as neurotypical.  
 
There is no cure for most of us out there with issues with anxiety, depression, mania, compulsive and obsessive behaviors, substance issues, trauma, and impulsivity issues. I'm probably never going to find a magic pill with no side effects that grants me a complete absence of Tourette symptoms.
 
But I can teach myself to manage my behaviors, and make the shock of dopamine in my system that I'll likely experience forever a little less shocking. I can make my body a kinder, gentler place to live in.
 
And so can you.