5 Ways Life With Tourette's is Way Weirder Than in Movies

It all started when he loudly blurted out the phrase on the bus ride home from his high school senior class trip. In a small town like the one he lives in, word gets around. Soon, it wasn't uncommon for him to introduce himself at a party and be greeted with "Oh, you're Butterscotch Dinosaur Pussy!" His friends keep a running list of his most hilarious tics, which also include "My lovely lady dicks," "Zebra pubes" (often followed by "Are they black or white?"), and "Fuck me, Martha Stewart." He occasionally tics entire verses of songs and poems, and for a while, his tics took the form of Billy Mays-style rants.

Of course, none of it is intentional, and Ben stresses that you shouldn't laugh at the things a person with Tourette's syndrome says unless they laugh first, but he tries to embrace it. "I'd put 'Butterscotch dinosaur pussy' on T-shirts if I could," he says. If you agree, check back in our store next week, because we are both morally and fiscally bankrupt, and that is a surefire best-seller if we've ever seen one.

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But while tics aren't a reflection of your own thoughts, they can be influenced by the outside world. Ben's family finds it endlessly amusing to suddenly shout "Waffles!" because without fail, he will tic it back to them. This is a phenomenon called echolalia, and Christie Hayes experiences it, too. "It's like a game of Simon Says."

It would be great if it was always that innocent, but Ben describes it as "like having a little guy in your brain saying 'What's the worst thing we can say right now?'" For example, Sunday school was a big problem for Ben. As a devout teenager, all he wanted was to learn about Christ, but his good intentions were thwarted by stern-faced preachers who didn't appreciate him growling "Fuck me, Jesus" like a black metal singer during service. Christie had a similar problem when a college professor complained to the school about her service dog. It just wouldn't stop barking during class. But it wasn't the dog -- it was Christie.

These misunderstandings make life a lot more complicated. Whenever Ben gets on an airplane, he has to hand the crew a note stating that he is medically certified Not a Terrorist, because on his first international flight, his brain decided that was a good time to shout "Bomb!" And though he doesn't have a racist bone in his body, he's constantly afraid to walk around in neighborhoods with a predominant minority population, for fear of inadvertently acting out scenes from Die Hard With a Vengeance.

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These physical tics present their own challenges, though. If Hollywood ever went for an accurate depiction of his disorder, Tyler Oberheu would probably be played by Zooey Deschanel rather than Adam Sandler. He says he's ruined a number of books by accidentally tearing the pages and shattered tons of drinking glasses when he twitched too hard. We know, we know, it's utterly charming when doe-eyed Zooey does it -- but then there's the vomiting episode that peeled the paint off of Tyler's bathroom wall, which was somewhat less "adorkable."

These tics can be physically harmful. Tyler often becomes so nauseated from constantly hitting and gyrating his stomach that its contents erupt in a fountain of liquid hamburger. The hitting has also severely damaged the vision in one eye and left him with cauliflower ear, a condition usually only seen in professional fighters. Ben has neck twitches that make him so sore and dizzy that he's had to take a month off from work to deal with it, and the neck-twisting tic that Kel Zhang developed briefly in high school causes him pain to this day.

Christie is mostly confined to a wheelchair because motor tics in her legs make it difficult to walk and cause her to fall down stairs occasionally. Tics can become so violent that Tourette's syndrome sufferers have broken their own bones. Where's that scene in your shitty comedies, Rob Schneider?

Christie can have episodes so severe that they look like seizures, some of which she's helpfully documented on YouTube. These aren't actually dangerous in and of themselves, as long as she avoids the stairs, but it freaks people out, and they'll sometimes call emergency services. The EMTs show up and usually respond with a nice shot of sedatives, which actually sounds like a bonus to us. Free sedatives! But Christie has what's called a paradoxical reaction to the drugs; they have the opposite of the intended effect on her system. She's usually back in the ER a few days later, because the sedatives cause "muscular spasms so crushing, they twist my body in ways that look like something out of The Exorcist."

Holy shit, this article that we thought was going to be about the many flavors of "balls" you can shout sure turned dark in a hurry, didn't it? Luckily, there's treatment. Unluckily ...

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Treatment isn't exactly a get-out-of-tics-free card. The medication that Tyler takes, called pimozide, can cause serious problems, ranging from the simply terrifying, like irregular heartbeat and difficulty breathing, to the just plain weird, like "fine, worm-like tongue movements." The same is true for a medication called Geodon that Ben takes, which also came with a delicious side of weight gain and mood swings.

Kel started using a transdermal patch called clonidine, which works by lowering your blood pressure to decrease the severity of tics, but all he got were chest pains. That's because Kel was in the unlucky 20 percent of Tourette's syndrome patients that clonidine doesn't do jack for. Fortunately, he wasn't out much for the relatively inexpensive patches, but tons of patients have sunk build-your-own-mech amounts of money into supposed miracle procedures that don't do a thing.

Tyler's family spent $30,000 on intravenous immunoglobulin (IVIg) -- twice -- hoping to treat the underlying autoimmune disorder that causes his Tourette's syndrome. Somebody forgot to tell them that IVIg hasn't actually been proved effective for his particular disorder. We're sure the hospitals didn't cash those checks yet, though. They'd probably be happy to refund all that dough.

Deep brain stimulation is a much-hyped procedure that Ben is considering. It consists of an electrical device surgically implanted in your brain to short circuit the errant signals. That's some pretty awesome-sounding sci-fi-caliber stuff, but unfortunately, it has turned out not to be as promising as the study authors had hoped. It's less effective for verbal tics than physical ones, and even Ben's doctor agrees that it's not ready to treat Tourette's syndrome.

Christie had the procedure anyway, and she says it has made her tics less severe, but they're still not gone completely. While she's less reliant on her wheelchair, she still needs snuggles from her service dog to help calm her. We really hope some doctor prescribed those in a high-stakes medical setting: "Nurse, this woman needs 1,500 ccs of nuzzles, stat!"

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If you believe pop culture, diagnosing Tourette's syndrome is a simple matter of waiting for the patient to scream "SHITNAZIS," dutifully recording the presence of the Fecal Reich in a notebook, and then presenting them with a free badge to say anything they damn well please. But in reality, it is shockingly difficult to diagnose Tourette's syndrome. Many disorders can cause similar symptoms.

It's not uncommon for Tourette's syndrome to go hand in hand with OCD, as in Tyler's and Ben's cases, and it can be difficult to tell the difference between the two. Does Ben's relentless urge to twitch his neck three times on each side count as a compulsion or a tic? What about Tyler's "constant need to play with my face and hair, because sometimes they feel uneven"? Even they couldn't tell you.

Tyler's official diagnosis isn't Tourette's syndrome at all, but pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (which science has given the adorable acronym PANDAS -- who cares if it's skipping a word: PANDAS!). On the subject of how PANDAS causes tics, science has settled on a resounding "I dunno, Gypsy curse, maybe?"

It likely has something to do with the way antibodies produced in response to viral infections get confused and attack the wrong cells. It can be brought on by something as common and simple as a case of strep throat.

Let's stress that point: Did you have strep as a kid? Take a moment now and pause to thank whatever divine entity you believe in (we suggest He-Man) for the lucky fact that you aren't uncontrollably flailing so hard that you break your own bones.

Related Reading: Did you know all those "safe weight loss" ads are modeled by wildly unhealthy people? Or that bed bugs means being covered in Vaseline all the time? Do you have a story to share with Cracked? Email us here.

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