sick of the highs and the lows

March 31, 2008 3:05 PM

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.

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.

posted by Juliet Banana to health & fitness (37 answers total)

How does breathing affect you. I don't know too much about Tourette's but a good pranayama practice/ technique may help.
posted by goalyeehah at 3:13 PM on March 31, 2008 [1 favorite]

+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.

What about push-ups or sit-ups (crunches)? They are easy on the legs, can be done at the spur of the moment and with no prep-work (if you leave a space for them), and are good for you without damaging your belongings.

The space doesn't need to be that big, either. A thin blanket or yoga mat on one side of your living room or bedroom.
posted by muddgirl at 3:17 PM on March 31, 2008

What if, instead of jumping, you dropped and did push ups, or maybe yoga?

I know nothing about TS except what I've read in Motherless Brooklyn, but that's what I do when I get antsy.
posted by anotherpanacea at 3:18 PM on March 31, 2008

A child I know has a need to do "calming" physical things in the evening to wind down. The two activities that seem to work for her are 1. Bouncing a ball (if you are in a 2nd floor living space that might not be kind to your neighbors) and 2. Spinning a globe. i.e. the family has an inexpensive globe on a floor stand that she spins in a rhythmic way.

Playing off the ball bouncing thing, you could try a paddle ball kid's toy.

I know nothing about Tourette's and don't mean to demean your issues by suggesting kid's stuff, but these things seemed to fit the specifications you outlined in your post.
posted by agatha_magatha at 3:19 PM on March 31, 2008

I remember reading that one of the reasons that people become anorexic is because they normally have an excess of dopamine, and by not eating, they remove some of the metabolic precursors of dopamine, and thus have less in their brain. So, you could try crash dieting. That's probably healthier then smoking. I'm not a doctor, obviously.

Also, I wonder if that new anti-smoking drug would help you. It's called Chantrix and it supposedly operates on the same parts of your brain as nicotine. It also unfortunately causes suicidal thoughts.
posted by delmoi at 3:22 PM on March 31, 2008

More on yoga: if you went to some sort of vigorous yoga class like a "Vinyasa" or "Ashtanga" class, you'd be taught a fairly regular set of exercises that require breath control and are physically strenuous. In many ways, it's a perfect fit for the symptoms you describe. But push-ups might be a faster solution.
posted by anotherpanacea at 3:24 PM on March 31, 2008

There's (tap) dancing, or maybe ballet for something more controlled.

Try making yourself remember to stretch your legs or whole body before and/or after you give in to the tic, at least part of the time. It might help things end more quickly (or not, but you never know).

Which muscles does this tic come from? Can you transfer your need to feed one tic onto a completely different one without needing to go back to the original tic at the end?

Also, notice whether frustration makes things any worse for you. If it does, I'd stay away from the "Jumping is bad!" mentality :-)
posted by trig at 3:29 PM on March 31, 2008

Have you tried training new muscle-memory?

For some sports (martial arts, fencing, dance/ballroom, etc) especially at competitive levels, a lot of time is spent training the body to do very specific motions until they just happen instinctively - it is absolutely necessary that they become instinctive, as the brain needs to be concentrating completely on very complex higher things at the same time.

Basically, I suspect you can make the natural thing for your body to do when you brain yells "GO!" to be something other than jumping - it would be similarly unthinking, and would probably have to be similarly powerful, but could potentially also be something quite precise, and more to point, would be the thing you chose when you started the training - eg all that energy going into hit a pose like BANG!, instead of JUMP! The downside is that retraining muscle-memory doesn't happen overnight. It might be months or years.

As an aside, the drilling-in-new-muscle-memory process works because your spinal column is not just a bundle of signal-conduits, but contains gray (brain) matter - it can learn new habitual instincts. This is also why you pull your hand off the hot pot handle before you can even feel that it is hot - the neural path to your spinal column is shorter than the path to your brain, and since these nerves are not myelinated, the "hot" signal takes a while to reach the brain. The "let go!" signal the spine sends out is myelinated and very fast, so gets back to the muscles before the "hot!" signal registers in the brain.
posted by -harlequin- at 3:42 PM on March 31, 2008 [1 favorite]

The background on your question is fantastic and really informative, so thanks. I really had very little idea of what Tourette Syndrome is actually like before this.

Looks like others have already had my idea of doing something like push ups, sit ups, or some other excercise that is pretty stationary, and low impact (you mention being on the second story. Those below you will be very thankful when you find an outlet other than jumping up and down. Even walking can be annoying if it's audible downstairs, and lasts for a while). I also thought maybe you could get an excercise machine of some sort. A bike or whatever. That way you don't have to get your shoes on, grab keys, change clothes, lock door, go downstairs, before being able to get your body moving.

Another idea I just had is the whole wearing some sort of bracelet as a reminder for things. People sometimes will put a rubber band around their wrist to remind them of something. The idea is that when you again notice the fact that you have a rubber band on your wrist, and think, "why the heck do I have a rubber band on my wrist", you'll of course remember why, and then you'll act on it as appropriate. So my idea is this: get some sort of somewhat large, somewhat heavy, loose bracelet to wear. If you find yourself jumping up and down, you'll be likely to notice the bracelet flopping around on your wrist, and it will cause some minor annoyance. Hopefully this will help remind you that jumping up and down is not a good outlet for your energy.
posted by gauchodaspampas at 3:43 PM on March 31, 2008

Seconding dancing. What if you learned a couple basic steps, like a 6 or 8 count swing pass, or some salsa moves...it's a great thing to practice while walking around the house anyway, you'll get really good at it, it's pleasurable, and you can do it in public and people will just think you're stylin' and love to dance.

Also, this may not be the safest of choices, but how would an adrenaline-releasing extreme sport help exhaust your extra energy? Is that a bad idea?
posted by iamkimiam at 3:44 PM on March 31, 2008

Oh gosh, I've got another idea (I'm secretly trying to turn you into me, by advocating you try all my hobbies, haha)...what if you learned sign language? Then you could randomly practice signing when you have excess energy. It gives you something to do with your hands, as well as engages your brain in focused activity.
posted by iamkimiam at 3:46 PM on March 31, 2008

I should perhaps add that in my own experience, there are unthinking explosive motions that used to be the most natural thing in the world for me to do, that I just can't quite do anymore because it has become so much more natural for those muscles to this this other thing instead (that has been drilled in). This is partly why I think you can knock "jump" off its pedestal as the default thing that happens when brain yells "GO!".
posted by -harlequin- at 3:48 PM on March 31, 2008

Insight meditation. It's the best path to mindfulness.
posted by 1 at 4:01 PM on March 31, 2008

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.

Thank you for this very simple and easy to understand explanation of Tourette's. You have a very clear voice in your writing, I really admire that.

Could you maybe switch to sit-ups so you aren't putting more stress on your already tired from work legs or maybe get one of those mini trampolines to make less stress on your body (and floorboards)? Or maybe have someone speak into a tape recorder in a very calm voice "you can stop jumping now, its ok..." over and over?
posted by meeshell at 4:02 PM on March 31, 2008

I'd get something like this. Basically a tiny exercise bike that you use while sitting in a chair. You could put it under your desk, and when you feel the urge to move, start peddling. They also have stairmaster-y ones.
posted by showbiz_liz at 4:13 PM on March 31, 2008

what about a punching bag? that'd be fun.

also, jumping are good. have you tried jumping over things?
posted by stubby phillips at 4:15 PM on March 31, 2008

Hula hooping is the obvious answer here. Don't get a kids hoop from a toy store; instead invest in a good quality exercise hoop from a site like Hoop Shine or Hoop Girl. Pick it up whenever you have the urge to move! For more on hoop culture, check out hooping.org

(By the way, I am simply a hooping enthusiast and have no affiliation with any of the above!)
posted by infinityjinx at 4:17 PM on March 31, 2008 [1 favorite]

Best explanation of Tourette's I've ever read.

Nicotine gum is not supercheap, but you might give that a try.

Seconding meeshell's mini trampoline suggestion.
posted by rtha at 4:21 PM on March 31, 2008

I was about to recommend getting yourself a huge outdoor trampoline (and what a perfect excuse! "It's for my health.") They're a blast, despite being kinda dangerous (or perhaps because they are).

Then I saw the final caveat "it has to be able to be done indoors in a small space, with no prep."

So scratch that. I submit a simple and cheap solution: get yourself a length of rubber hose and keep it near your desk. You could tie to to a strap and when you get the compulsion, use it for variable-resistance kicking. A thick enough rubber hose will give you some good resistance.

The more cumbersome solution might be to get a stationary bike and whenever you feel the need, jump on and do sprints for ten minutes or so. That should take the wind out of your sails.
posted by mullingitover at 5:32 PM on March 31, 2008

My first thought was dancing as well, perhaps trying to change the "jumping is bad" to "boogie!" You could endeavor to include crouching bouncy dance steps in place of jumping, which would use the same muscle groups without the stress on floorboards/knees/feet.

The Charleston (the real, jitterbug step, not just the flapping your hands and feet back and forth like in the movies) is a satisfying bouncy dance step that can be performed solo, burn off a whole bunch of energy, be performed in a low crouch that would use lots of quad and glute strength, and is also really fun. It would take a minute to learn, but could easily become second nature enough to be a replacement tic. There are a few instructional videos on youtube.
posted by jennyjenny at 6:42 PM on March 31, 2008

Learn to Juggle.
posted by coffeefilter at 6:42 PM on March 31, 2008

This isn't portable, but for at home: how about a bouncy ball? My son, who has certain quirks of his own, benefits greatly from his. It would be easier on your legs (and your floor, and your downstairs neighbors) than just jumping up and down, but might still scratch that itch. An inflated one fits under a table, or can be used as a chair or an exercise ball.
posted by The corpse in the library at 6:48 PM on March 31, 2008

Seconding the person who suggested changing "jumping is bad" to "boogie!" -- or anything that eliminates the use of negative reinforcement. I think it would be much healthier for you emotionally/mentally to give yourself positive reinforcement of an alternate activity rather than punishing yourself for jumping.
posted by jogaun at 6:55 PM on March 31, 2008

weight lifting?
posted by maloon at 7:16 PM on March 31, 2008

What about something like this. Exercise Trampoline.

This will permit you to safely jump up and down; and lessen the impact on your body. Whatever you choose, this could act as a transition 'action'
posted by filmgeek at 7:47 PM on March 31, 2008

Don't have TS, but have spent time around a lot of people with compulsions and too much energy. Sounds like there's a couple of ways to go with this - use up the jumping energy in ways you're already used to, or redirect it to something else. For jumping quietly, a mini-trampoline could work if you've got a spare square yard. I like the mini-bikes or mini-steppers - keep it under the couch and when you've got energy to burn, pedal for a while (the bikes often come in configurations that allow you to put them on a tabletop and "pedal" with your hands if you need to do something with your arms instead), no problem. Then there's those rubber tubes with handles on the ends that people use as resistance instead of weights - lift like dumbbells, lay down and push with feet, bunch up and just twist/pull. Cheap, no bigger than a jumprope. I'd walk around a well-stocked sporting/exercise equipment store and see if anything attracts you and fits your space.

Then there's the redirecting angle - learn to juggle, dance, do handstands, etc. Nice, and would give you a skill? But I don't know enough about TS to know if you retain fine motor control when it's tic-time. I also don't know how tics and habituation works, whether you'd end up compulsively salsa-dancing at the bus stop or whatever. Tell us about that.
Two more gadgets: I'm intrigued by the StressEraser - a little biofeedback machine that you can use to train yourself to relax and breathe properly. Helped someone with their anxiety attacks, might help you.
Then there's my last suggestion, and the cheapest. At the drugstore, go to the toys aisle and find those balloon-with-a-rubber-band things (blow up balloon, put rubber band in fist, make rapid punchy movements andit goes bouncy-bouncy off your fist and back). $0.99, fits in your purse, won't freak out the neighbors unless you do it in the elevator?

Oh, and they're still not cheap without insurance or some kind of subsidized smoking-cessation programs, but nicotine patches do come in low doses - look for the last step of a multi-step package, which is the equivalent of 4 or 5 cigs a day (step 1 will be like 20, step 2 = 10, etc.). But that's nicotine all day and night (makes your dreams weird) and it sounds like you've got your tics under control enough that it would be overkill.
posted by penciltopper at 8:01 PM on March 31, 2008

Thirding meeshells mini trampoline idea. Regarding nicotine patches; you could get the lowest dose patch and cut them into halves or quarters to cut down on the price and the dose, and take it off at night.
posted by lunaazul at 8:33 PM on March 31, 2008

Nthing mini tramp and dance (whatever kind you like, be it disco or cha-cha or triple swing). Dumbbells or kettlebells when your legs can't take it.

Also, leg bouncing, you know, the kind where you're sitting and your heel taps up and down really fast, is widespread, unlikely to provoke questions, and a very sustainable slow steady energy sink.
posted by eritain at 9:50 PM on March 31, 2008

Instead of push-ups or sit-ups, for which you have to drop to the floor, train yourself to do squats or, if you have the upper body strength and the space for a bar, pull-ups.
posted by agentofselection at 10:05 PM on March 31, 2008

I like trig's idea of tap dancing. I am a lifelong tapper, and I find that tapping is extremely satisfying.

Also, I found your post very interesting and insightful. You did a good job of explaining the biology and psychology of tourettes.
posted by radioamy at 10:06 PM on March 31, 2008

Juliet, I have no helpful suggestions for you but I would just like to say that I think you are a wonderful writer, and that is something I know a bit about. I have never read a clearer, more informative or more moving portrait of TS. If you haven't been writing, you might want to consider getting into it. Who knows, it may help channel some energy, too.
posted by Guy_Inamonkeysuit at 6:12 AM on April 1, 2008

How about Shovelglove? You do have to have the hammer handy when the urge to move strikes you (maybe you could leave a few around the home?) but I find it a fidget-quieting excercise.
posted by Drexen at 7:01 AM on April 1, 2008

What about one of those large bouncy balls that were so hip for fitness a few years ago? I have restless leg syndrome (which sounds like it manifests similarly although less intensely), and find bouncing on them to be very satisfying. Another thing that has been helpful for me in dealing with RLS is swimming regularly. Counting the laps is satisfyingly rhythmic and my legs are really tired after swimming for a mile.

Nthing the fact that this is a fantastic and clear description of Tourettes.
posted by dizziest at 10:31 AM on April 1, 2008

I'm overwhelmed; lots of good answers, some well-meaning but not as helpful, and enough compliments on my writing to make me blush.

I should have explained, perhaps, how clumsy and simple-minded I can be while haunted by the ghost of Gilles de la Tourette.

I live in a two story house, but I'm stuck upstairs because I simply don't trust myself not to jump on the stairs or go down so fast that I wipe out. I worry about hurting myself sometimes. So trampolines and kicking things might be slightly dangerous.

I also don't quite have the motor control for juggling or free weights.

However, I love the idea of dancing! I've tried it out. At this point, I still have to concentrate on popping my collar and brushing that dirt off my shoulder, and once I stop paying attention because I think I'm done I start hopping again.

I think eventually, though, if I replace the jumping often enough with a different activity, I could start replacing it without thinking, and thereby knock hopping down from it's current position as #1 complex tic.

The yoga mat idea is smart, too. I actually do most of my hopping in a tiny photo studio and I might try to find a white floor drop that is cushy and soft enough for me to do whatever the hell I want on it. Multi-tasking!

I appreciate people pointing out to me that exercise isn't something that must be done while wearing special clothes and shoes in a gym. There are plenty of simple actions that are just a simple and physical and jumping but with lower impact. I might take a yoga or aerobics class or two on a free monthly pass and drop out once I learn some sweet moves, and there's plenty of free internet resources as well.

Thanks for reading this and taking the time to write up an answer! I declare you all members in the uber-exclusive Tourette's Club for life!
posted by Juliet Banana at 4:39 PM on April 1, 2008

How about jump rope? It can be as low key or hyper as you want it.

Another thumbs-up on your explanation of Tourette's.
posted by deborah at 8:55 PM on April 1, 2008

Do you have a second story in your apartment building with stairs inside? Maybe you can run up and down the stairs. Or maybe a small punching bag for your apartment if there's space?
posted by lemonade at 8:04 AM on April 2, 2008

I'm wayyyyyy late to this party... but I suggest using a punching bag. It's repetitive and won't strain your legs as much.
posted by cranberrymonger at 1:05 PM on February 7, 2009 [1 favorite]