Tuesday, January 15, 2013

Discovering Tourette’s

Summer 2012 brought an interesting discovery; one that might be considered unfortunate to most, but for me the discovery was met with relief. The events leading up to my diagnosis of Tourette’s Syndrome (TS) go back decades, but really came together during the last 10 years.
I was always a twitchy kid. I did a lot of blinking, raising eyebrows, throat clearing, and other considerably mild tics that may not have been especially noticeable. This stuff never went away, but became more prevalent into later teen years. Teen years are a mosh pit where tender, self-conscious, drama, and other shady characters listen to life scream at them while they jump, kick and punch each other for no good reason but to show that they can. Most of us grow out of it, but for someone with an unknown neurological disorder and no knowledge or explanation about its symptoms being displayed, I became increasingly self-conscious, and did my best to mask or suppress my tics. For some time this was effective.
As life went on, bringing with it the stress and anxiety that I imagine most people experience, the compulsions associated with movement disorders became stronger and stronger. Co-workers brought my tics to my attention. I totally bombed job interviews. I developed greater social anxiety. I began to notice chronic pain in my jaw, face, neck, side, and back.
Home life was a little different. Although I still suppressed tics, the comfort of home made it easier to just relax and be myself. My wife Candace couldn’t help but notice my movements and I was not quiet about the pains associated. Then one night we saw a program about TS, featuring children and teens with some pretty extreme cases of the disorder. But Candace mentioned to me that a lot of what was going on with me was comparable to what the program was discussing. Although the light bulb suddenly turned on over my head, Candace had flipped the switch on.
I began studying TS and quickly began to see myself fitting easily into that realm at least. A couple of months later I was in my Doctor’s office for my scheduled Diabetes check up. While there I talked about my tics and asked about TS diagnosis. Before I got very far he stopped me.
“You don’t have Tourette’s.”
“Really? How do you know?”
“Because you’re an adult. Tourette’s is a kids disease, and they grow out of it.You probably just have a stress induced tic. Here, fill this prescription for {some kind of muscle relaxant medication}.”
“So there’s no chance that it’s TS? Should I see a specialist to determine this?”
“No, I’m telling you, you don’t have TS.”
I didn’t fill that prescription. There had to be more to this, and I was quite sure I didn’t need meds to relax my muscles. I continued studying until I was certain I did have TS. It explained so much. So, self-diagnosed, I told people close to me that I have TS. Of course, because of my Doc’s words, I was a little self-conscious (once again), but I had no other explanation.
About a year later I had my professional diagnosis. My sister’s family was in town and there was a pool party for both sides of the family; our side and her husband (Jared)’s side. I hadn’t seen Jared’s family for years. His sister was there and noticed my tics. She just happens be an APRN specializing in psychiatric and anxiety disorders (such as PTSD) at the VA hospital. Thanks to her concerns she asked that I come see her. So we sat down with the official book and discussed my family and medical history, and all of my symptoms. In the end, the criteria was met. I was diagnosed with TS. But I wasn’t devastated or even down. I was vindicated. I could finally put a name to the face…name being TS, and face being my very twitchy face.
There are levels within TS. My case is fairly mild, though it does come on strong at times. TS is pretty tightly knit with some comorbid conditions, which are OCD and ADHD. I definitely have symptoms of OCD, though I don’t see any telling signs of ADHD. As a whole these conditions are not widely understood, and media has portrayed these, especially TS, in a very abstract light, leaving most of us ignorant and under-educated about them. Please learn more. I recommend either the Center for Disease Control and Prevention or, for a more detailed version (and frankly a much more interesting read) see Tourette's Syndrom on Wikipedia.
Thanks for reading.


  1. Good that you have started a blog. Writing out what you are experiencing is very important and gives others information that is very useful. It is also good for your family to understand what is going on in your life and to support you in whatever you need!
    Good luck and we love you!
    Your Aunt Marilynn

  2. "I could finally put a name to the face…name being TS, and face being my very twitchy face." :)

    Great post, I had no idea you experienced pain & suffered as a result of the tics however I'm glad you were able to get a solid diagnosis and move forward!

    You neglected to mention how your tics completely go away when you are shredding! -Oz

  3. I guess I am one of the lucky ones and I always had a hiccup kind of tic as far as I can remember. Never thought anything of it and thought it was from my asthma. Then a year ago it came on more still didn't think anything of it, but a friend did ask if I had tourettes and I told her "Not that I know of". Then end of Jan. 2013 I starting doing a wired neck jerking and wired sound so a week goes by getting worse I decisions to go to the ER. They though I was on phyc meds and told them no. I ended up going to a Nero did bunch of rest and past all. Right around my 32nd birthday in Feb. I was diagnosed with tourettes. I've except it and on ok with it :)