The Roller Coaster Ride

Somewhere along the line I mentioned I have OCD in addition to TS. Any time you have two medical conditions one of them is typically considered to be a “comorbid” condition of the other. Comorbidities are common as dirt with TS. Depending on the statistics you look at, it’s more common to have TS with one or more comorbid conditions than to have it by itself.

This can be one of the more terrifying aspects of TS for the family of someone who’s newly diagnosed. Support forums are full of comments along the lines of, “Weren’t the tics enough?! What’s next?!

It’s tough to provide any kind of helpful information at that point. You can’t reassure a scared parent that their kid won’t get comorbids because you really don’t know. You can’t even tell them what comorbids will show up because no two people are the same. You certainly can’t tell them the likely severity of the comorbids any more than you can tell someone how severe their tics will be as an adult. Welcome to the great ughknown.

The last time this topic came up in a forum I came up with an analogy:

TS is a lot like a roller coaster. Most people figure it out during that initial clanking journey up the first big hill. From that perspective the whole thing looks like this endless climb toward the sky with a certain precipitous drop at the top.

But what does the rest of the roller coaster look like? Will there be a loop? Two? A spiral where everyone turns upside down? A tunnel? More ups and downs? Is that guy two cars back going to get sick and do something the rest of the people on the ride will never be able to unsee for the rest of their lives?

Want to know what the answer is? I HAVE NO CLUE!

I can’t. Because we’re each on a different roller coaster. Some will be violent. Some will be gentle. Some will have loops, or spirals, or tunnels. Some will have lots of hills, some won’t. None of us know until we ride our ride.

And you don’t know how it’ll affect you until you get there. Some people deal better with the ups and downs than they do the loops and spirals. Some can handle the loops, spirals, and tunnels, but a fear of heights makes the hills a screaming terror. And some will ride any damn thing and just keep laughing, even when the guy a couple of cars back gets sick.

But here’s the catch: Worrying about what’s up ahead won’t change the outcome. You might be able to mentally prepare yourself, but chances are you won’t. You’re still going to scream just as loud as if you hadn’t. Heck, you might scream even more because you psyched yourself up for it rather than just taking the bumps and wiggles as they came.

This is why it’s hard to compare tics, obsessions, compulsions, attention problems, etc. and say person X has it harder than person Y. Person X may step off the world’s highest, fastest, wildest roller coaster screaming, “YEEEEEAAAAHHHHH!!! BRING IT, BABY!” and person Y may come off the kiddie ride coaster, shaking, and gasping out, “I hate roller coasters. Dammit I hate ’em so friggin’ much!” Who’s right? Both of them are. Who got the rougher hand dealt to them? You got me.

I think this also explains, to some degree, the comaraderie people with TS and all its comorbids tend to share. They might compare notes a little, see who has the loops, who’s got the spirals, see who’s got the biggest hill. But in the end they knuckle-bump, nod knowingly, smile, maybe a little sadly, and say, “Ride on.”

Dancing in the Department Store

If you want a recipe for making a self-conscious teenager, give them Tourette’s Syndrome but don’t tell them what it is.

My first tics showed up when I was three or four, but I wasn’t diagnosed until my early 30’s. That’s not to say the tics weren’t there. Trust me, they were there. I just didn’t know where they came from, and I was too scared to go to a doctor. Heck, so few people knew about TS even Hollywood didn’t know how to make fun of it.

But my friend sure did. One of the key formative moments of my childhood was the first time I picked up a Sony Walkman and put on headphones. Yes, I’m that old. Sheesh! These days headphones and earbuds are so common that people are immune to their effects. But back then? The sign of a neophyte was the dreaded Headphone Voice.

“Hey, whatcha listening to?”
“WHAT?!”
“I said, what are you listening toooo?”
“I’M LISTENING TO SOME LED ZEPPELIN! IT’S AWESOME!”
“Did you know you’re yelling?”
“WHAT?!”

You get the idea.

The only problem was it wasn’t just my voice that was getting Headphone Voice. It was my tics. At the time I had one I would make in the back of my throat. It sounded like a soft cough or like someone quietly clearing their throat. You could barely hear it.

In Full-On Headphone Mode it came out like a powerful grunt. All of my friends were sitting around staring at me, listening to me grunt like I was trying to clear the world’s most massive case of constipation using only stomach muscles and sound waves. Finally one of them took off the headphones and yelled, “YOU’RE GRUNTING!”

Everyone thought that was the most hilarious thing they’d ever witnessed. So of course the next week everyone at school knew. My new nickname was born: Grunt Boy.

Emotionally it was devastating.

Unless there are self-injurous tics involved, this is actually what causes most people with TS the greatest distress. It’s not the tics themselves. It’s how other people react to them. If you took two people with almost identical tics (yeah… good luck) and stuck them side by side, one could truthfully say their tics are completely debilitating and the other could truthfully say they were no big deal. The difference? How much each one cares what other people think.

I didn’t really learn this lesson until college. And the catalyst didn’t have TS. What he had was style.

At one point during my college career I lived in a house with three other students. We were all in the same department, we all took the same classes, and we all studied together. We also hung out way more than was strictly healthy.

During one of our weekend excursions we wound up at the mall, walking through Macy’s. Without any warning whatsoever, one of my housemates took off through the store, skipping and dancing. He sashayed up to the perfume counter, spritzed himself with a sample bottle and declared, “Doesn’t this make me smell divine?!” Before we could catch up with him he was off in another direction.

We were mortified! We tried desperately to catch up, but he was far too fast. We chased him all over Macy’s as he skipped from display to display, trying samples, asking salespeople if something complimented his eyes… Finally we caught up with him, and one of our other housemates chastised, “What are you doing?! People are staring!”

“Why the fuck should I care what other people think?!” he yelled back.

The ride home was tense and very very quiet.

But that stuck with me. Why the fuck should I care what other people think? They don’t live with me. They don’t eat my food. They certainly don’t clean my house or help me with my homework. In what way does their approval or displeasure impact me in any way, shape, or form?

That’s when it dawned on me: I really shouldn’t care.

Of course I still did. But at least I knew it was a choice I was making. And as the years passed I found that I cared less and less.

By the time I was finally diagnosed with Tourette’s Syndrome I didn’t really give a rat’s ass any more. I was just glad to know why I kept jerking and twitching and making weird noises. It didn’t stop people from judging me. But I knew that their judgement was more of a reflection on them than it was on me. When the doctor asked if I wanted treatment for my tics I could honestly say, “No. I just wanted to know.”

As I left the doctor’s office I felt like I was floating on cloud nine. I sat in my car and reveled in the knowledge that I wasn’t crazy. I just had Tourette’s. If I’d been in Macy’s, I would’ve been dancing.

Unintentional Awareness

I’m a big fan of coffee, but other than that I’m not a huge fan of ingesting large quantities of caffeine or any other stimulant. I drank my last soda over three years ago, and will never go back. But even when I was drinking sodas I was never a big fan of the ones that seemed to exist simply to inject caffeine into a human recipient. Jolt, and especially Mountain Dew just never made any sense to me.

But it’s just possible that they’ve done people with TS a solid with this new ad campaign for their Mountain Dew Kickstart (TM, I’m sure) line of drinks.

It’s not the drinks themselves. I still think they’re horrid. But they just made a video of people who seem to have massive full-body gross-motor tics, and made it seem not just cool but desirable!

I remember very clearly being ridiculed in fourth grade for looking just like the actors in that ad. Even two years later the kids in my school were still making fun of me for “being a spaz”. Ooooh, how the times have changed. If I was back in fourth grade now, everyone would just assume I was chugging large quantities of Kickstart, and would wonder where they could get some. I’d be with the “in” crowd. A trend setter!

Or maybe it’s just the vest. Yeah, I never had one of those…

Abatements

My previous post was titled “Triggers“, and talked about some of the things that exacerbate tics. I don’t know what the opposite of a trigger should be called. Dampener? Suppressant? Slacker-offer? How about abatements: things that abate or minimize tics. As with the triggers I can only discuss my own with any depth, but I’ll touch on those of others where I can.

The biggest one for me is being asleep. I don’t really think it’s fair to call this one an abatement since I don’t tic at all in my sleep. Not that I’m around to take notes, but my wife is an observant person and has told me many times that I don’t. Besides, if I had half the motor or vocal tics I normally do, she’d never be able to get to sleep, herself. Trust me, she would’ve told me. But I’ve heard of other people with TS who do tic in their sleep, so don’t take this as a given.

One abatement that seems to be common to almost everyone with TS is finding something that absorbs them completely. I find I tic less when flying kites, doing photography, and writing. Any guesses what my main hobbies are? I can also throw machining in there, but it doesn’t capture me as much as it used to. I do tend to tic when machining, just less so.

At this point you may be asking: if doing these things reduces the tics, can’t that be leveraged into a cure? As with the discussion on triggers, the answer is no. I still have TS when I’m doing these things. I just tic less.

Could it be leveraged into a treatment? You betcha! Give me a note from my doctor saying it’s cool for me to spend all my time flying kites, doing photography, and writing, and I’ll give you a big ol’ hug. But at some point someone is going to point out that I also need to do the dishes, do laundry, and go to work. Can’t play all the time.

Another good one is to remove as many triggers as possible. That one can be leveraged into… not exactly a treatment, but certainly a lifestyle. If I eliminated caffeine and music, and got rid of all the a-holes in my life who give me crap about my tics, I’d have fewer tics! I can’t say much about the caffeine and music since I refuse to give those up, but I have managed to surround myself with people who really don’t give a rat’s ass if I have tics. Best treatment ever!

Martial arts and meditation worked well for me in the past. I spent a couple of years studying Tae Kwon Do when I was in college. Those were some of the most tic-free years of my life. I never became very advanced at meditation, but it was an important part of our daily routine at the dojang. Meditation combined with the gross-motor exactitude of the forms worked wonders for my awareness of what my own body was doing. Regardless of whether you have TS, OCD, or any condition at all, I cannot recommend martial arts highly enough. The only reason I’m not still studying it is that I moved away and haven’t found another school to study at.

I’m not a practitioner of yoga, but I’ve been told by those who are that it’s as effective for controlling tics as martial arts. Makes sense since the mechanism is essentially the same. There are some good yoga schools here. I might take this up in the future.

There’s one other form of abatement that bears mentioning, but before launching into chemical abatement I need to point out that I’m not advocating anything I say past this point. A good bit of this falls under the category of self-medication. I’m not a big fan of self-medication because it’s such an uncontrolled process that pays so little attention to the long-term cumulative effects of whatever you’re ingesting.

But so is going to a psychiatrist who only considers pharmacological treatments. The ones I’ve met who fall into that category really didn’t seem to give a rat’s ass what the chemicals were doing so long as the Merck Manual said they could be used to treat TS. And long-term cumulative effects? The ones who prescribe crap blindly really don’t care. Steer clear.

A far better choice than either of these is to find a doctor who’s got a clue, listens to their patients, and does their homework. They’re worth their weight in gold, and are well worth the years it may take to find one. Just saying…

I’m mostly going into chemical abatement because the chemicals that can be used this way come up in social settings, so it helps to know how your tics will react to them. I already mentioned caffeine and coffee. Not a form of self-treatment. This makes my tics worse. But coffee is damn yummy.

Other stimulants fall into this camp, too. As a kid I was prescribed a CNS stimulant by a doctor who really didn’t have a clue what he was doing. This was before anyone knew I had TS. My tics spiked, and my mother brought me back. Considering TS had been on the medical books since the late 1800’s you’d think a doctor would do a little reading and say, “Hey! I think this kid might have TS!” Noooooo… Instead he told my mother I should be institutionalized. See why I have a problem with doctors who prescribe crap without doing their homework?! My mother took me home, discontinued the medication, and never went back. I’ve avoided CNS stimulants ever since.

Alcohol is a weird one. My tics typically get worse after the first drink and get better after the second. As inconsistent as that sounds it makes sense if you think about what the alcohol is actually doing. Like many people with TS I suppress my tics in public. I can’t make them disappear, but I can try to minimize their impact. I’ll turn aside to hide a motor tic. I’ll hold a hand up to my mouth to make a vocal tic appear more like a cough. I’ll try to suppress my vocals, knowing it may lead to an increase in motor tics. I can even hold them in to some degree, knowing I’ll have an outburst later.

But after one drink that level of control goes out the window. My ability to feel a tic coming falls apart, so I’m less able to conceal it with some other gesture. It becomes harder to hold down my vocal tics, so they become more frequent. And actually suppressing them? Ha! Good luck.

By the second one, though, the alcohol is having enough of an effect on my neurotransmitters to decrease the frequency and severity of the tics. But it also means I’ll have a headache the next day, which is not what you want when one of your tics is to jerk your head off to one side over and over. Guess you can see why I’m not a heavy drinker.

From what I’ve been told pot works wonders to reduce tics and has far fewer side-effects than, say, Haldol. I expect we’ll see a lot more research along these lines once legalization of medical marijuana becomes more prevalent and more studies can be done. I don’t really have any experience with it, though. Just not my thing.

I have no clue how tics respond to other drugs, but from that one experience with CNS stimulants I’m a little reluctant to find out. Brain chemistry is already such a delicate thing. Throw something out of whack enough for someone to have incessant motor and vocal tics, and that balance becomes far more important. I’m sure there are other things out there that would reduce my tics, but they really aren’t severe enough to warrant that kind of experimentation.

Sometimes it’s ok just to tic.

Hey! Fix me a coffee!

 

 

Triggers

Gotta love triggers – those events or conditions that knock on your brain’s door and ask your tics to come out and play. Everyone with TS has them, and for each person they’re different. So if you’re looking for a trigger-by-trigger, tic-by-tic playbook, I’m sorry to disappoint you. I can only share my own:

One that almost everyone with TS shares is being around other people with tics. (And you thought it was only yawns that were catching! See how good an analogy that is?) Worse yet is watching videos in which people tic. Life is unscripted and unedited. But videos? You can take a half hour of footage, edit down to only the juicy ticcy bits, stick it on Youtube, and make two minutes of concentrated tic-triggering hell.

And it’s not just your own tics that get triggered. You find yourself taking on other people’s tics. One of the funnier phenomena with TS is when someone posts a link to a TS awareness video in a support forum and asks, “Do any of you have any of these tics?” My stock response: “Well I do now! Thanks a lot!

The most extreme example of this came when I went to the TSA National Conference many years ago. I got on the plane with a really mild set of tics I could more or less hide. I reached the conference hotel and found the entire place was booked and chock full of people with TS. There must have been over a thousand attendees at that conference, almost all of them with tics. When I left several days later I was about as subtle as one of those wind-up monkeys with cymbals. It took months for them to work their way out of my system so I could get back to normal.

Stress is another common trigger, which is why giving someone crap about having TS is such a pointless waste of time.

Me: >tic< >tic< >tic<
Them: “Stop it.”
Me: >tic< “I can’t.” >tic< >tic< >tic< >tic<
Them: “I said stop it!”
Me: >tic< >tic< >tic< “I really can’t!”  >tic< >tic< >tic< >tic< >tic< >tic<
Them: “CUT IT THE @#$! OUT YOU FREAK!”
Me: >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic< >tic<

Get the picture? It’s like trying to put a fire out by dumping gasoline on it. The fire’s going to grow into a bigger fire, and the one dumping gasoline on it is just gonna look like an idiot.

Another one for me is caffeine. It’s a pretty common trigger, but not everyone reacts to it. For a variety of other health reasons I really try to limit my caffeine. Something about being in college and a doctor asking me, “You drink two pots a day?! Are you insane?!” These days I try to keep it to just a few cups. Yeah, it makes my tics worse. But you have no idea how much I like coffee.

Music is a big trigger for me. Not all music. Just some. I admit I get a little jealous when this topic makes the rounds on the support forums. I see posts saying, “Music soothes me,” and “When my tics are really bad I can lie down in my room, put on some music, and everything just calms down,” and I just think how lucky they are. Of course there’s nothing quite like driving home after work, having an awesome song come on the radio, and having my vocal tics hit full throttle. That’s reason enough to roll down the windows, crank it up, and let ’em rip!

But the worst, for me, ties back into my OCD. My guess is this relates to the stress trigger more than anything, but I’ve got a specific one that gets me every time: having all my exits cut off.

I realize I probably should’ve gone into OCD and how it keys into TS before launching into this topic, but I didn’t. So bear with me. Just like TS, OCD has its stereotypes and truisms. Not everyone with TS swears constantly, the way Hollywood would like you to believe, and not everyone with OCD can’t step on cracks, though that actually is one of mine. With classic stand-alone OCD these “gotta do”s or “can’t do”s are typically tied to some overwhelming feeling of danger, like having your family die a horrible death or knowing that you’re causing someone pain. With comorbid OCD in conjunction with TS, more often than not it’s tied to the feeling you get when you try to suppress your tics. When I step on a crack I don’t think anyone’s going to die as a result. I just know deep down in the core of my being that it’s WRONG. And that sets off the tics…

It’s funny how easy it is to handle cracks. Or not stepping on color divisions, which is more what it is in my case. When I’m in a cross-walk, my feet either have to be completely on the white stripes or completely on bare pavement. I can’t step so that my foot crosses that boundary. Not without feeling absolutely horrid, anyway. On bad days I have to have the same number of steps on each foot on the white stripes. It sounds like I’d have to walk around with this comical exaggerated care to pull off a stunt like that. But for the most part I can just lengthen or shorten my stride, step where I need to step, and move on. People I’m walking with rarely even notice.

But that whole thing about exits? Yeah, everyone notices that one. It’s dead-nuts simple to avoid stepping on a crack. But try going to a grocery store and not having someone block the aisle with a shopping cart, and then have someone else block the other end of the aisle with another shopping cart. Not challenge enough? Try Costco. Still not good enough for you? Try a festival. Or a dance club. Or a concert. Or any of the other myriad activities people do because they’re “fun”. And every time you lose your exits, you start ticcing and can’t stop.

“Come on! Let’s go out to the club. It’ll be fun!”

“Aaaaaah! Um… I’d love to, but I can’t. I already had an appointment to have pencils surgically inserted under all of my toenails. And you know that kind of opportunity doesn’t come up often! Have fun without me.”

Oh yeah. I was the life of the party in college. Maybe that’s why I drank so damn much coffee.

So why expose myself to any of them? Couldn’t I cure my TS by removing all these triggers from my life? In a word, no. I’d still have TS. I’d just have a slightly milder case without ever getting to do some things I really love, like drinking coffee and listening to good music.

Let me turn that around and ask you: Do you do anything that you know isn’t healthy, but you do it anyway because you like it? Having the occasional drink? Eating that ice cream? Staying up late, knowing full-well you have to get up at 5am the next morning? Trying that skateboard trick, knowing the first five times you did it you face-planted?

I hope your answer is yes. If we only did what was best for us, we’d all be nice little pre-programmed robots and wouldn’t have any fun at all. Sure, cutting out all risks to health, life, and limb is a good way to survive. But is it a good way to live?

You have to assess the risks and ask yourself, “Is it worth it?” For me, coffee’s worth it so long as I limit my intake. Clubbing? No chance in hell. Putting on some Avril Lavigne or The Smiths or soaking in the sound of Pink Floyd and ticcing to exhaustion?

You betcherass it’s worth it, tics and all.