What I Learned From Tourette’s

tourettes1.png

This post is a bit scary to write, and will surprise most people who know me, but here goes.

6 months ago, I got my 23andMe genetic test results. They showed mostly what I expected: 30% chance of diabetes, 24% chance of atrial fibrillation, 40x greater risk of Celiac disease than the general population. All of these things are found in my extended family to some degree.

But there was one thing I didn’t expect.

I have double the normal risk of Tourette’s syndrome. Yes, Tourette’s is commonly associated with people walking down the street swearing and thrashing around uncontrollably. That’s not me, but it did get me thinking.

My dad, brother, and I all have tics. They had always bothered me, but I learned to internalize most of them so they aren’t noticeable unless you’re looking very carefully or I let down my guard. They are part of the reason that I can only see people 3 days a week, because I need the other 4 days to recover from the effort. I began to wonder, what if I could address the tics and live life with more ease? So, armed with the new 23andMe information, I started to investigate this part of my health that I hadn’t really looked at in detail before.

The first thing I did was to write down all the different tics I do, which are almost all on my left side. My theory as to why I don’t have many of the vocal tics characteristic of Tourette’s is that perhaps only my right brain is affected – so the right side of my body and my language center, both controlled by my left brain, are mercifully free.

Here are all the things I do, mostly involuntarily, every day (after the jump):


- shift my eyes quickly across bright lights or high-contrast things
- rotate my tongue around my lower front teeth
- tense and release my left shoulder
- scrape my heel across cracks in the sidewalk as I walk
- crunch up and release my toes in my shoes
- scratch my head
- clean under my fingernails
- rub the flap of my cheek flap with my thumb
- dig my nails into my gums (to the horror of my dentist)
- strongly blink my eyes
- tense and release my left inner thigh
- wiggle my toes in a particular pattern
- stare down the side of my nose, often combined with a strong blink
- wipe my thumb across the corners of pages as I read
- swish food around my mouth in a very specific pattern
- rub my fingers against the little tabs on the f and j keys of my keyboard
- scuff my toe on the sidewalk or against the stroller wheel if I’m pushing it
- step on cracks with the ball of my foot, if I’m not scraping over them
- shift my heel inside my shoe as i walk
- rock in an uneven chair
- step across a line of sun-shadow, often combined with staring down the side of my nose and a strong blink
- grind my molars

The first of these tics started in childhood, and the list grew during stressful periods like high school, college, and postpartum. As far as I can tell, it could be classified as Chronic Multiple Tic Disorder, which is on the Tourette’s spectrum. But whatever it’s called is less important than the effect it has on my life.

After being surprised by the number of tics I hadn’t realized I do every day, the next thing I did was to make a list of what triggers or exacerbates the tics:

- stress
- excitement
- change
- social isolation, or wanting attention
- social anxiety, which is in direct conflict with social isolation
- lack of sleep
- transportation, or just being physically moved
- boredom
- clothing on skin, like tags, seams, or tight areas
- light/dark contrast
- sensitivities to light/sound/touch/smell, especially when I’m overtired
- eating, or worrying about body image
- cloudy/rainy days
- obsessive hypercycling thoughts

The last one on the list deserves further explanation. I haven’t seen any research on this, but in my experience, thoughts can tic just like bodies can tic. My mind will fixate on a particular thought and repeat it over and over and over again until I take some action to release it. This is very helpful to me in work situations, because it enables an incredible productivity that I might not be able to sustain otherwise. It is less helpful in other life situations, especially when my mind decides to fixate on inappropriate social behaviors that require an immense effort for me to hold back.

In January, I decided to track 4 of these thought patterns that were particularly distressing, to see how often they happened relative to each other. I used Your Flowing Data to capture the data, using the free iPhone app YFDUploader as an interface for easier on-the-go recording of thoughts. The four thoughts I tracked were: need for social attention, need to move my body, worry about food, and social anxiety. Each of these could be its own blog post, but here is the distribution I found.

tourettes2.pngThe need for attention stood out because I had just had to break off a dear relationship, but it surprised me that I was spending such a huge amount of time thinking about it. The motion tic is sort of background, always there. The food one is related to body image, which I am almost always worried about in one way or another. And the social anxiety one was probably related to phone calls I had to make to continue my work while living in Hawaii for the winter, but I had expected it to be a greater fraction of the chart.

The next thing I decided to do was explore and test ways that I could ease the physical and mental tics. I made another list of things I thought helped me:
- peace and quiet
- touch
- exercise
- being in nature
- playing and listening to music
- 5hTP
- estrogen
- meditation
- focusing on work or an intensive task
- playing games
- having plans/structure/control
- dietary changes, specifically targeting dairy and gluten
- talk therapy

I started experimenting with each of these, choosing a simple, binary outcome measure: at the end of the day, did I feel like I had been particularly bothered by tics that day, or not? And did I experience any side effects? For dietary changes and therapy, I experimented for 3-4 weeks, since it takes longer to see effects. For the others, 1-2 weeks was enough to notice a difference. My treatment bias was that I wanted to avoid drugs at all costs, especially if lifestyle changes could be effective.

Here is a subset of my results:

tourettes3.pngMeditation came out as the clear winner here – it’s free, has no side effects, and 25 minutes a day makes a significant difference in the amount of tics in my day. Right now I’m combining it with weekly Cognitive Behavior Therapy, and the occasional 5hTP when I am feeling particularly distressed. I still have a ways to go, but I feel happy to be on a path to an easier life.

So what did I learn from Tourette’s? I learned to be gentle with myself – to accept my differences and allow myself to accommodate and address them instead of criticizing myself for not being like everyone else. I learned how little is really known about mental health – we pay so much attention to taking good care of our physical bodies, but don’t do much for our minds. I learned to meditate and to wear comfortable clothes. I learned to be curious about how different minds think about things, and I learned greater compassion for people living with poorly defined neurological conditions. I learned how lucky I am to have such an incredibly supportive life partner, and I learned once again the power of self-experimentation to find a personalized combination of effective remedies.

Going back to genetics for a second, and the scary vulnerability of this post – I wanted to write out my experience partly to help my two daughters, who may grow up to experience similar things. And I wanted to help them consider the larger question that emerges with Tourette’s and other neurological conditions, given the advantages in different forms of cognitive capacity that can be associated with them:

Do we cure, or celebrate?

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15 Responses to What I Learned From Tourette’s

  1. Robin Barooah says:

    Bravo! What a marvelously clear story, and such a great summary of what you learned.
    I’d say this is definitely cause for celebration celebrated!
    Better understanding of oneself is a great gift. I love the way you describe that it helps you to be more understanding of others too. I can’t think of a better outcome for this kind of self-inquiry.

  2. Andreas says:

    i think that the blogpost shows, that you’re just an average asperger-syndrome, which is a bit unusual for females, but still quite common. dissecting the world by describing it with abstract parameters with very good observation is indeed useful in many jobs, but can also be causing problems in communicative situations giving rise to social anxiety.
    You should think about whether these ticks are compulsive behavior, or if they can be surpressed purely by giving attention to them. If suppressing is easy, I wouldn’t fear tourette-like behavior too much.

  3. Alex Bangs says:

    Thanks for sharing this – a helpful example for others to realize that taking a careful approach to logging/quantifying can help you make connections and find solutions — and for many conditions including those related to mental health.
    This is also an interesting point about the genetic testing that gets lost in some of the debate – the value in better understanding a condition that you may be already living with (e.g., Tourette’s or Celiac disease).

  4. Gary Wolf says:

    Thanks Alexandra for another fascinating post. The inclusion of side effects in the decision matrix is so important!

  5. David Carmichael says:

    Alexandra, as usual your insights into yourself are fascinating reading and very instructive. I have never paid much attention to the tics I have (and gave you?) or to what causes them or how to minimize them. Congratulations on having the fortitude and the patience to explore them in yourself.

  6. Alexandra Carmichael says:

    Thanks everyone! I did get one email flaming me for not telling people they should go to a doctor for proper diagnosis – but for me, the diagnosis isn’t as relevant as the symptoms, and using a Tourette’s lens to look at myself helped me figure out how to lessen my distress, regardless of what a formal diagnosis would be.
    I also got a wonderful, insightful comment from Christine Peterson on Facebook, which I wanted to share because she talks about a future we will all be in:
    “You are a pioneer in this area. Over the next decade I bet many of us are going to find out that we have some kind of spectrum issue. Thanks for being one of the first to figure hers out and talk about it; this will help all of us be braver and calmer when thinking about what our own differences may be. It will also help us try to give you what you need to have a wonderful life with the body you have. Many of the things you list that help you are things that are good for all of us anyway, so you can show us the way to incorporate them in our lives. Brava!”
    Thanks again for letting me share – I hope it helps other readers in their own lives, to know what one person’s journey is like.

  7. Tom says:

    Great article, thanks !

  8. Michael Nagle says:

    Hey, before you mentioned meditation, I was writing a comment in my head suggesting it! I practiced Zen Buddhism for a few years (and still meditate daily — just without a religious framework.) I remember discovering very simple tense-and-release patterns … most pronounced before going in for interviews with the Zen Master I was studying with…! I’ve often thought that in the same way that meditations seems to dissolve mental frameworks and let what-has-been-habitual in one’s mind become workable, it can do the similar things for body habits.
    I wonder if you have found any particular value in body-oriented meditations, such as body scanning, or in “progressive relaxation” techniques? These seem to focus on becoming mindful of sensations the body for extended durations of time (half an hour or more ) … a friend recently went on a 10-day Vipassana retreat in the SN Goenka style, and said that after day 4, body scanning was the chief technique used!

    On a separate thought, as someone who has dealt with a lot of chronic pain, I really appreciate your personal disclosures. I suspect there are others out there who feel a lot of resonance with them. In particular, I was thinking of your WIRED bio — in which, in brief, it was mentioned that your vulvodynia made sexuality difficult. As I am now learning how to navigate sexuality with different patterns of pain present on different days, I have really appreciated knowing that there’s been a sort of kindred spirit in this kind of difficulty out there! (As I write this, it dawns on me there must be tons of people who go through this kind of thing … but I suppose both chronic pain and sexuality are already things that tend to be highly personal and rarely shared about!)
    I suspect in similar way, there are people who will deeply resonate with reading this article of yours. I appreciate your being willing to share these details publically and think it’s great!

  9. Chris Hogg says:

    Thanks Alex for another great and personal post. This was a very interesting one for me. I recently received my 23andMe results, and was also interested in my CC status and increased risk of Tourettes. I started to think about all of my little tics and habits, the ways my mind focuses on things (for productivity and for distraction) and wondered about ‘my makeup’. I think it is an interesting thought experiment and an interesting thing to have in common! However, I do worry about the impact of labeling. We are all obviously complex, and ultimately, we are each at the intersection of our own multi-dimentional set of ‘spectrums’. I love the trigger for self exploration, but have tried not to attribute too much to any given trait or set of traits I find. I wonder if ‘labeling’ could be a negative path to take, so as you, I am trying to understand and accept. Tics and all. Thanks again for sharing.

  10. Alexandra Carmichael says:

    Thanks Michael! Yes, sexuality and chronic pain intersect in at least 1 in 6 women at some point in their lives, and no doubt many men as well. And yes, I find body awareness meditation very helpful, and have done Tai Chi for the past 13 years, which definitely helps.
    Chris, thanks for sharing! I agree that labeling is a big consideration. Daniel and I went through this in deciding whether or not to label our kids as “gifted”, but after thorough psychological testing, we decided that it would help them to know that they are both unusually smart and unusually sensitive to the world – gifted kids already know they are different, so helping them put words to it can make a huge difference in their self-esteem and ability to cope. In the same way, putting words to my tics helped me see, accept, and deal with them, rather than fret vaguely about how much harder daily life seems to be for me than other people. But each person will have different experiences and comfort levels with labels.

  11. Matt says:

    Thanks for a thoughtful and brave article.
    1) you said you don’t have “as many” vocal tics. Do you have any at all? If you do, I believe you have Tourette’s, which is diagnosed based on presence of both motor plus vocal tics. (uncontrollable swearing is only present ten percent of the time)
    2) there’s a great post from not too long ago on “the frontal cortex”about the advantages of Tourette’s. The goalie for the u.s. World cup soccer team has it-and there’s some speculation it actually helps him.
    Thanks again. I appreciate your work very much.

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  14. Lisa Betts-LaCroix says:

    Great post, Alex! It’s helping me to design an experiment right now around switching from an SSRI to 5HTP and enabling my thinking on how to track difficult to measure symptoms.

  15. Nick says:

    Thanks Alex! A great read and a lot of helpful tips to use to track my life & progression.

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