I have Tourette Syndrome, and I can't stop jumping up and down. Help me rewire my defective brain to channel this activity into something less destructive.
posted by Juliet Banana to health & fitness (37 answers total) 60 users marked this as a favorite
I have moderate Tourette Syndrome. I have the whole gamut of symptoms, coprolalia, echolalia, twitching, blurting out my thoughts, and touching/tapping/hitting things. My symptoms have calmed down a lot from when I was first diagnosed with severe TS as a teen, as Tourette tends to mellow out in adulthood, partially due to better ability of the sufferer to identify the "oncoming urge" and control it. I can hold down a job. I'm happy. I don't have to explain it to every single person I meet. The people I've lived with get used to it, and I barely think about it most of the time.
However, I can't ignore this one particular tic and pretend it's not hurting me anymore. Between 3-10 times every day, I stand up and wander around my house, and invariably start hopping up and down as if I was on a trampoline. I've knocked over pots of ink and dishes of coins. It's probably not the best stress to put my second-story floorboards under. I've usually just worked a full shift in heels and then walked two miles home and the last thing my legs need is to hop around like a bunny. I'm sick of it, and I want to stop.
I need help finding an alternative activity that won't knock over my possessions and hurt my legs. I have all this excess energy, and I need some way to burn it. I know most of the people reading this don't have TS, so please bear with me while I describe what it feels like to have a tic.
The (very) basic neurological mechanics of Tourette Syndrome is that the brain produces an excess of dopamine and/or has difficulty regulating it. In a normal brain, you think, "I'd like to pick up that apple," and your brain shoots off a paltry little dose of dopamine that has a message attached to it: "Raise arm, close fist, lift apple." If you have TS, it's like having a defective firehose for dopamine receptors. My brain randomly shoots off large doses of dopamine with absolutely no message attached,and my body picks the easiest way to burn it off, something completely random, or an action I've performed many times before, or saying a word from my ever-changing-lexicon of swears and nonsense.
Over the years, I've gotten better at feeling the burst of dopamine before I perform the action, but I don't always. Have you ever absent-mindedly grabbed the handle of a blazing hot pan on your stovetop? Before you had time to think "this is hot" or "that was stupid" or "I need to move my hand," you jerked your hand away, instantaneously, without thought. That is how it is possible for someone with TS to perform an action without being fully aware that they are doing it. Half the time I don't know what word is coming out of my mouth until I hear it.
You've probably also experienced how the burst of dopamine feels. The absolute best way for me to describe it is "shuddering revulsion." Have you ever been walking along the sidewalk, and out of the corner of your eye you realize you are about to plant your Converse directly into the rotting corpse of an unfortunate cat or squirrel? Chances are you staggered backwards, your skin crawling, your heart racing. Chances are your thought process was not very long or complicated, just "get the hell away." That is how the "oncoming urge" feels: restless, twitchy, shivery, every nerve alive and blazing and alert, uncomfortable, breath sped up, heart rate up.
The oncoming urge differs from tic to tic. Sometimes I don't feel it at all and a word just slips out of my mouth. Sometimes I can feel it coming quite distinctly, and I'm able to CHOOSE how I want to use up the energy, usually something non-offensive and easy like tapping my fingers on a tabletop. And sometimes, instead of an all-at-once huge burst of dopamine, there's a slow, steady, restless stream of excess energy.
The jumping up and down is a slow and steady tic. I have ALWAYS had some form of these tics, that are much more physically involved and prolonged than your average tic. When I lived in sunny California, I used to burst out my front door barefoot and run around and around my block until, panting and sweaty, it wore off. Now that I live in a city where shoes and jackets and locking the door is required, I've outgrown the need to go outside. I need immediate gratification in the form of physical activity before the need is satiated and the creepy restless feeling wears off.
It starts with me sitting, normally. I start feeling restless, and I think, it would be nice to get up, and walk around. I've tried just staying put, but I just get more restless and antsy and fidgety and anxious and it's torturous, so I give up. As I'm wandering from room to room, without thinking, I start jumping up and down. Most of the time I don't realize I'm doing it.
There are a few ways I've been able to stop or prevent it. I'm looking for more. If i can identify the oncoming urge, I can channel the energy into something less hurtful (I used to smack my fist really hard onto tabletops until I learned to just tap until the urge went away). If I'm in a job interview or something, I might be able to stop them outright, or do something that normal people do (throat clearing, head shaking). But deciding to not have TS anymore is like deciding you're never going to urinate again. You might make it a few hours, but eventually you're going to think "why am I torturing myself" and give in, or just forget. I can't simply will myself to stop having tics, but I can possibly train myself to have a DIFFERENT slow and steady, involved, prolonged physical tic besides jumping up and down.
Things I have done that have helped:
+Trying to burn the phrase "JUMPING IS BAD" into my brain so that when I'm mindlessly hopping up and down my rational, concious brain can butt into my blank thoughts and say "JUMPING IS BAD, CUT IT OUT, STOP." And I do. The problem is, I don't even realize what I doing when I start jumping, so it takes a while for me to realize I'm doing it, much less that it a bad thing.
+Smoking. Nicotine has been proven to help control tics, and the "going outside" requirement fulfills a need in me. I've actually started running/hopping with a cigarette in my hand before and given up after about 5 seconds; smoking calms me down a lot, and smokers aren't exactly known for their physical prowess. The cons should be obvious; Tourette won't kill me, smoking will.
+Being quite tired. I've gotten the "hey, you should go walk around!" urge while climbing into bed exhausted before, and was able to resist it because the absolute last thing I wanted to do right then was get up and jump around.
+Identifying the oncoming urge, and saying "I'm going to go walk around. That's all I am going to do." As I walk around I try to remain very concious of the fact that I am just walking, that's it, no jumping allowed.
Things that probably won't help:
+Medication. The side effects are not worth the benefits for me. I'd rather hop like the Easter Bunny than vomit everything I eat, or lose control of the muscles in my hands, or pass out a half hour after taking my pills. Tried it and hated it.
+Nicotine patches. They're too expensive OTC, I don't have health insurance, they're generally only used as medication in people with more severe TS than I currently have. I'm worried that the dosages meant for quitting smokers would be too strong for someone who only smokes occassionally.
Things that might help (please add to this list!)
+More exercise. As mentioned, these urges come even when I am very tired, or my legs hurt; I am only able to resist them if absolutely knackered. The problem isn't that I'm naturally a very active, energetic person; the problem is that I have Tourette, and I would continue to have it even if I ran a marathon. However, if these urges came after I had worked out for the day, I might be able to tell my brain "I'm exhausted, fuck off" or "I already did that today at the gym, I'm done for the day." Part of my need is ritual fulfiillment, but I also need something that can be done anytime, anywhere, when the urge strikes me. I already walk everywhere, though; I'm a little worried I just might be piling onto my soreness.
+Posting a big poster in every room that says "JUMPING IS BAD" to help me be more mindful and stop sooner.
+Deciding on another, similar, safer ritual/activity. I need ideas for this; it has to be able to be done indoors in a small space, with no prep.