Unlike the typical course of Tourette Syndrome, my symptoms kicked in much later. I might have had a couple symptoms, such as uncontrollable yawning when I was 15 and the onset of my OCD when I was 12, but the major tics didn’t kick in until I was 17.
A quick back story is that I developed whooping cough in January 2011, and after a couple months, my doctor noticed my wheezing wasn’t coming from my chest anymore. Anything could set it off — laughter, cold weather, exercise — and I would begin to wheeze for the next extended period of time. I was probably wheezing a couple hours of day, and eventually my classmates and teachers were used to it.
I would have fits where I felt like I couldn’t breath with gagging and coughing. So I was sent to a couple doctors, and after asthma was ruled out, the diagnosis was vocal cord dysfunction. Basically they thought that the whooping cough had sensitized my vocal cords, and now when I take a deep breath in, they closed rather than opened. So they sent me to a hypnotherapist for relaxation hypnosis, and that is when the ball started to roll.
Normally, hypnotherapy sessions last an hour, and after one session, about 90 percent of patients show marked recovery. I had it done 3 times and no progress was made. The doctor during one of our sessions asked if he thought this treatment was a joke. I had no idea what he meant, and he said that he noticed I was rolling my eyes a lot when I talked. I chalked it up to me just thinking and that I completely respected him.
After a couple visits, he was convinced that my eye rolling was a tic, as I did it quite a bit. My mom had even started to notice how much I did it and slowly I did too. He talked to a neurologist colleague who suggested that he put me on a medicine conventionally given for tic disorders since he thought the wheezing was probably related to the eye rolling. I noticed that the medicine made the wheezing much better. I wasn’t cured, but my limits had been reduced greatly.
We went to another local neurologist who only had to see me wheeze after running before he said it was tic, also based on my symptoms getting better with tic medicine. So they sent me to get checked out at Cleveland Clinic with a top pediatric neurologist. They wanted to rule out PANDAS since my tic onset had been very sudden, I had been taking medicine for my OCD for a couple years, and I had had strep more times than we could count.
The doctor at Cleveland said that I didn’t fit the criteria for PANDAS and that he thought I had spasmodic vocal dysphonia and not a tic. He switched me to a new medicine, increased my OCD meds, and to our dismay later e-mailed us telling us he was mistaken and not sure what I had.
At that point, my hypnotherapist was great and really going above the call of duty since he was a pediatric pulmonologist. He asked around and sent me to Strong Memorial to a doctor that specialized in pediatric tic disorders. At that point, I had developed more tics. I was rolling my eyes still, shrugging my shoulders, had a movement where I moved my right rib section in and out, had facial grimaces, still was wheezing, and had a variety of vocal tics.
I had almost no control over most of them and could suppress them for a bit. The doctor said that based on the presentation of motor and vocal tics for over a year, along with the OCD, that I had Tourette Syndrome. He explained everything we needed to know and decided to take me off my tic medicine for two weeks to see what the course of my TS was. We would make adjustments from there.
In those two weeks, I developed so many new tics. Snapping, hand clapping, leg tapping, tippy toe walking, nose touching, different vocal tics, sniffing, coughing, and the most infamous one of all: the Whoop. When I got the diagnosis, I didn’t want my siblings to know about it and only told my closest friends, who had already started to notice some of my tics.
The list was around 3 people. I was at indoor track practice one day. I normally just watch and help out since I can’t run. When I started touching my nose a lot — it was like I was rubbing it. When we transitioned from one gym to another, my friend who knew about the TS noticed it. Out of nowhere, I let out a couple whoops. She laughed and was entertained, as was I.
With all of my tics, I always tried to laugh them off, so I was never upset when my friend laughed at them. My other friend figured out if she said the word tomato that I would whoop. My other friend said drop the beat and I would do my sniffing tic. I thought that all this was OK since it was all in good fun.
My one friend was able to figure out how to calm down my whooping tic when I couldn’t stop by transferring to the nose touching tic. I really appreciated that. It was clear I had to be put on medicine again and once I was, I was able to control them a little bit better.
So that is how I got my diagnosis. I don’t resent my TS — it is a part of who I am. I let my friends make fun of it because I love seeing them smile, as they exploit my excessive dopamine levels. I might as well have fun with it since it is going to be around for a while.
I’d love to read what you have to say about this post. Feel free to let me know what you think and leave a comment. I love reading them.