Tourette Syndrome: The Anatomy of a Tic From the Point of View of a Person With TS Features
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Features  |   August 01, 2002
Tourette Syndrome: The Anatomy of a Tic
Author Notes
  • Beth Krah, lives in Atlanta with her husband, Mark, and their son, Preston. She presently deals with Tourette Syndrome, Obsessive Compulsive Disorder, and ADHD. It is thought that these were triggered by the estrogen in a birth control pill. She is presently working on a book about the joys and trials of not being quite normal. You can e-mail Beth at bkdesigns@hotmail.com.
    Beth Krah, lives in Atlanta with her husband, Mark, and their son, Preston. She presently deals with Tourette Syndrome, Obsessive Compulsive Disorder, and ADHD. It is thought that these were triggered by the estrogen in a birth control pill. She is presently working on a book about the joys and trials of not being quite normal. You can e-mail Beth at bkdesigns@hotmail.com.×
Article Information
Special Populations / Genetic & Congenital Disorders / Features
Features   |   August 01, 2002
Tourette Syndrome: The Anatomy of a Tic
The ASHA Leader, August 2002, Vol. 7, 5-7. doi:10.1044/leader.FTR2.07142002.5
The ASHA Leader, August 2002, Vol. 7, 5-7. doi:10.1044/leader.FTR2.07142002.5
If you are a parent, friend, or clinician of a child with Tourette Syndrome, I know that you ache watching the child going through difficult times with tics, and you feel desperately helpless. Your heart goes out, wanting to ease the child’s discomfort, but you feel like an outsider, and are at a loss for what to do. I’m sure you would gladly trade places in an instant if you could. If only.
What’s going on inside the child’s mind? How can you help?
I’d like to attempt to describe a tic from the onset to give you more clarity and insight into what the experience is like. It is not my intention to offer options or recommendations for treatment, but rather to help enable you to understand the episodes when they do occur. Also, this is a personal account of what I have gone through, not necessarily what everyone experiences. Each individual is different.
My doctor once compared Tourette Syndrome, or more specifically, tics, to a Whac-A-Mole game at an amusement park. You hold the weapon in your hand, ready to strike at whatever pops up. By the time you whack at it, three more pop up. As soon as they disappear, the first one re-appears, sometimes with more force than before. It’s frustrating, to say the least.
Imagine your entire body filled with millions of tiny bubbles filled with energy. Not unlike the Tasmanian Devil. Never resting, high octane bubbles, multiplying inside your body. That’s what I feel like when I’m having a tough time. I feel restless. My breathing begins to accelerate. Things I try to focus on become fuzzy; not necessarily by sight, but in my mind. They’re not as clear as before. I can’t concentrate. Too much is happening inside. My neck feels weird. I feel this tiny rudder at the base of my skull that wants to turn my head back and forth, up and down…violently at times. (I’ve actually given myself whiplash because of this.) My big toe starts “thumping.” All those tiny energy bubbles infiltrate my whole system. My eyes try to roll up and back into my head as far as possible. I begin to shake and tremble as I notice the heel of my hand aiming straight for my forehead again. I have to hit my forehead. I don’t know why. I need to feel the pressure of something against my head.
My husband wants me to stop. He thinks I might injure myself. I once asked a doctor if that was possible. He said, “Yes, you could do brain damage.” Oh. But I have to do it. I don’t know how not to.
Sometimes my husband has to pin me down and just hold me there until I can calm down. I have to fight him. I want desperately to wrestle with him, but he’s afraid someone might get hurt. Most likely me. My sensory receptors seem highly over-sensitive to everything from light and sound to temperature and movement. My feet are hot, or cold. I can’t get comfortable at all. The sun is too bright. Everything is too noisy. Too loud. Too cold. Too hot. Something may move and startle me. I just about jump out of my skin! My feet are really, really hot. So are the palms of my hands. I can’t do anything to change this. It drives me nuts! My foot begins to shake or “flick.” On my waterbed, I feel as stiff as a board. My husband says, “Just relax.” Yeah, sure, okay, I can do that…not! I try to pretend this isn’t happening… pretend I’m normal. Ha!
I tell myself, “Just stop all this. You’re normal. Just stop and think of something else. Pretend you don’t have Tourette’s.” That lasts a total of maybe three seconds. I hold my breath and stiffen myself as hard as I can. Maybe, just maybe, if I hold my breath long enough, I could faint. Then I’ll be able to relax, right? Oh, to have something that could knock me out. Something that would calm me down, allow me to relax, let me sleep.
I can fully understand the desire to take something that will immediately put me to sleep. But what if I don’t wake up? I want to enjoy my life. I’m having too much fun enjoying life. I live life to the fullest! I don’t want to stop that. There are too many things I want to learn how to do yet. I just want to stop the pain. Can life ever be that perfect this side of Heaven? I guess I’ll just have to wait. Sometimes I don’t feel like waiting a month for some of these medications to work. But I also don’t want to screw up my poor brain any more than it is now.
My eyes start to itch. Everyone thinks I wear contacts. Okay, think that if you want. Maybe it’s easier that way. But it’s just another tic. Another mole to whack. To tell you the truth, they just itch… a lot! I blink a lot, try to rub them, put drops in them. Nothing seems to help. It seems to itch behind my eyes, behind my nose, my ears, and my face. I try to itch my ears. What a pain! Q-tips just don’t hack it. It itches too deep in my head. So I end up making facial contortions and grimaces, thereby looking really silly, stupid, or just plain weird. How do you itch your brain? That’s what it feels like.
Sometimes my brain feels funny. That’s the only way I can describe it. It’s almost like someone switched the wires around in my head. Like someone got in there and unhooked all the wires and put them in the wrong places. Go put ‘em back! I don’t like this feeling! I feel like I’m on hold. Like my brain went on “pause” and I’m stuck. I remember standing in front of my dresser, staring at it. The conversation with my brain went something like this: “Okay, get dressed.” But how? “Just get dressed.” But I don’t know what to do! “Look, how many times in your 36 years have you done this?” A lot? “Okay, first open the drawer.” How? What drawer? I’m stuck. I don’t know what to do! Help!
That’s about the time I begin to turn in circles. I keep going until I fall on the floor, or until my husband tries to stop me. I’m dizzy, confused, and tired. Please, please just let me sleep. Sleep seems to be the only escape. But sometimes, when I’m wired, all I can do is walk in circles around the house. I’ve measured the distance of some of these walks. I’ve covered more than a mile just walking through our kitchen, hallway, dining room, and back through the kitchen again.
Sometimes my five-year-old sees things that I’d prefer he not see. He gets this concerned look on his face. “Daddy, what’s wrong with Mommy?” Most of the time I can turn the tic into something funny. Make a funny face or tickle him. Every night he prays that the “D’s” (OCD, ADHD, Tourette SynDrome) would “stay far, far, far, far away from our whole family.” Not that he understands what the D’s represent, but he knows full well he doesn’t want them anywhere near him.
When I lay down for bed around midnight, I get as relaxed as I possibly can. But a board can only bend so much. I begin to tic again. Lately, I’ve been able to read for a few hours until I can’t focus anymore. Then I may be able to fall asleep, usually around 2 a.m. Sometimes watching a movie may help. Sometimes I’ve gone up to the office to work on the budget, which just proves how desperate I am. The reading has to be something that I’m genuinely interested in, otherwise, forget it. Humor helps a lot. Whether it’s a comic book or book of humorous stories, laughing seems to help get my mind off of myself. Sometimes I can browse through a magazine and get decorating ideas. Another thing that seems to help me calm down is music. For me, it’s usually something like classical music, soft lullabies, or just listening to the birds sing.
If I sleep well, I usually wake up feeling like a truck ran over me, totally exhausted. And if I need to get up, I’m not sure how I’m going to. All night long I’ve been battling things in my dreams. I’m so tired of getting shot, worrying about my son dying, and planning funerals. It just wears me out. Staring at the ceiling, I’m still somewhat in a daze. I have to lie there and try to sort through everything. What really happened? What was only a dream? Is my son asleep upstairs, or did he really die last week? It may take up to a half hour to go through everything and make sense of it all. Canceling out one dream at a time. I feel like someone’s going to have to peel me off the bed like a fruit roll-up. I’m limp, totally exhausted, and have no energy whatsoever. But I can already feel Mr. Hyde’s tiny energy bubbles lying deep beneath the surface like a restless tiger,
waiting…
biding his time…
to once again take over my life.
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August 2002
Volume 7, Issue 14