Caffeine and Tourette’s

Arkansas AutumnFor the last few weeks, I’ve been revelling in the first days of fall. It’s like God’s breathed into the air, and the leaves have decided they’re getting tired of being green. The transition from summer to fall is magical. Unfortunately, the Arkansas autumn allergy season has hit me like a sledgehammer. Arkansas allergies are different from Nevada allergies, and I’ve taken more decongestant in the last two weeks than I have in the last year.

As I’m on the Worship Team at my church, these allergies can pose a great problem when it comes to singing. Because of this, I begged my husband to make me some coffee before church last Sunday, telling him it would help my voice for practice before church. Ever accomodating, my dear husband brewed us some coffee.

Honest to Betsy, I drank less than four ounces.

Yes, I know better.

No, I didn’t listen to that little voice in my head that said, “Remember, you’ve got to sit through an entire church service after this?!” Actually, I told that voice to kindly shut up. You see, coffee doesn’t always kick in immediately for me. Often, it takes a good half hour to an hour before it hits me full force. I’m not exactly sure why, but that’s how my body works.

But as soon as the church service started, great firing neurons, Batman, my brain was on warp speed! During the first half hour of the service, I’d considered 4 different church ministries I could help start or be involved in at our church, two or three new blog ideas I could write about, and I was intensely aware that my tics were on fast forward. And I felt great.

And then shaky.

And then came the crash.

In all honesty, I didn’t drink the coffee to get a thrill right before church on Sunday. (Although I’ll admit that sometimes I drink coffee just for the fun of it. What can I say? I’m a rebel.)

Coffee1

On that day, however, a hot cup of joe was simply the quickest way I could think of to clear my throat. As I sat in the pew that day, with my mind whizzing at ten times its normal speed, I decided to research the general affect caffeine has on other people with Tourette Syndrome. This is what I found.

According to the LIVESTRONG Foundation, it’s believed that Tourette’s is partly caused by an incorrect amount of the neurochemical Dopamine being delivered to the brain. LIVESTRONG’s article, “Tourette’s & Dopamine” says that brain scans of people with TS reveal, “certain parts of the brains of patients with Tourette’s show abnormalities in the transmission of dopamine.” The articles goes on to say that a 2008 study in Germany questioned 200 people with tics on how their consumption of caffeine affected their tics. Those questioned responded with 34% saying coffee worsened their tics, and 47% said the same about Coke.

The American College of Nutrition conducted a survey in 2003 of 1,794 people with tics, asking them what they thought most triggered their tics. According to the American Nutrition Association, caffiene came in second only to stress. (I can attest that these results would ring true in my life. Unfortunately, you can’t just choose not to have your daily cup of stress in the morning.)

In his book, World’s Strongest Librarian, Josh Hanagarne discusses his struggle with a severe case of Tourette’s. In his blog article, “Curing Tourette’s Syndrome Part 4 – Tics and Diet,” he puts caffiene as the first food on his list of foods that generally make his tics worse.

Pediatricts: Official Journal of the American Academy of Pediatrics did a study to see if the widely reported change in tics due to caffeine ingestion in children was scientifically sound. They used two first cousins, and over the course of three years, recorded the observed tics and their relation to amounts of caffeine in the children’s food. They concluded that the consumption of caffeine did indeed have an effect on the children’s tics.

Caffeine and Tourette's

I think we can safely say that caffeine can make tics worse for people with tic disorders and Tourette’s Syndrome. For some people, abstaining from caffeine isn’t a problem. For others, however, caffeinated teas, coffee, and carbonated beverages are the forbidden fruit, and it just doesn’t seem fair that such delicacies can’t be theirs. So what can you do?

1.) Find substitution vices – Switch to non-caffeinated coffees or teas. While there is some caffeine still left in decaf coffee, the amount is much less potent. There comes a point when you have to decide if that morning cup of coffee is worth the tics it forces you to suffer for the rest of the day.

Teacup1

The whole point of morning coffee, for many people, is the experience, having something yummy to look forward to each morning. If you look forward to this experience, try finding a new treat to look forward to. Maybe it’s a favorite fruit that you usually wouldn’t normally spend the money on, like a mango or raspberries. If you think about it, that $3.50 you might spend at Starbucks every morning is exactly how much a box of raspberries costs at the grocery store. Plus, the natural sugars in the fruit will be much better for you than the sugars in a latte or frappuccino.

2.) Reserve caffeine for special occasions – I don’t have caffeine on a daily basis. I do, however, indulge on a few select occassions:

  • When I have a head cold – The US Library of Medicine reported that a study was done to see if caffeine helped relieve the effects of the common cold. Apparently, caffeine boosts in colds can help clear the cloudy head feeling. (Although you’ll want to make sure you drink extra fluids to make up for the dehydrating quality of caffeine, which, according to Mayo Clinic, can exacerbate illness.)
  • Days when I’m way too exhausted to make it through eight hours of working with children – Because I’m in a job where I’m constantly moving around, the expenditure of energy counterbalances the extra tics my coffee might cause. If you do this, you’ll want to make sure you have an outlet for your tics, in case the input of energy exceeds your need and expenditure.
  • Days when I can do whatever I want – These are usually Saturdays. These are the days when I can do whatever I want with the energy inside me. While I try not to drink coffee right before exercising, I can spend the extra energy from the coffee by doing things like walking the mall or going on a major cleaning spree in my house. Basically, I need to make sure I won’t be sitting still for long periods of time. As much as I love writing, caffeine can even make it difficult for me to sit at my computer and do that.

Caffeine can be a hard thing to give up, especially if it’s something you’ve grown used to enjoying on a daily basis. If you feel like you might cave and know you shouldn’t, however, try to remember how you’ll feel after you’ve done the deed. If you truly struggle with tics, you know how difficult, and even painful the rest of the day can be if you don’t treat your body right. As all habits do, it’ll take time to wean yourself off of that daily dose of caffeine. Believe me though. It will be worth it. I can personally attest to that.

How does caffeine affect you? Please share in the comment box below. And don’t forget you can receive extra resources that I don’t include in my posts, and information on neurological disorders, education, and inspiration (as well as a thank you gift for subscribing!) if you sign up for my weekly newsletter

 

Posted under: Eating Healthy, Tourette Syndrome

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16 comments

  • evelyneholingue on October 8, 2013 at 6:46 pm said:

    Thank you for sharing a great post. Yes, caffeine doesn’t mix well with Tourette’s, OCD and ADD. The people I know (close friends and family members) who live with them confirm that caffeine (in large doses or regularly absorbed) increases their anxiety level.
    I like the other tips you provide through your blog. I recommended it!

    • brittanyfichterwrites@gmail.com on October 10, 2013 at 3:26 pm said:

      Hi there! Thank you so much! I’m so glad you enjoyed it, and I’m always glad to get feedback. (I’m sorry it took me so long to reply to your comment. I was trying earlier, but had technical difficulties.) Please let me know if you ever have anything you’d like to see as a topic of a post. I’m always open to suggestions!

  • Charley Rider on February 27, 2014 at 9:49 pm said:

    This is interesting. Yesterday, 2 years after my Tourett’s diagnosis, I finally traveled to a major city to visit a neurologist who knew what he was talking about. He didn’t feel there was much of a connection between caffine intake (I’m an abuser) and tics. I doubt that this is true, becasue I know that caffine increases my sense of anxiety, and anxiety increases my tics. But at the same time I was happy to hear this news, becasue, well, I’m addicted. We seem to have a lot in common, looking forward to reading more.

    • brittanyfichterwrites@gmail.com on March 1, 2014 at 4:14 pm said:

      Thanks for weighing in! That’s interesting that he would say that, considering so many people find caffeine responsible for their tics. It’s good you see that caffeine increases your anxiety though. I think that might be part of it for me. My brain’s always traveling at lightning fast speed anyway. On caffeine, it goes even faster, which means I can consider more things that make me anxious faster. And we do know that anxiety plays a huge part in exacerbating tics. Maybe that’s your connection, instead of a more direct one. I’m so glad you shared this, as I always enjoy hearing from others with disorders like mine. I hope you enjoy the rest of the sight!

  • Natalie on March 15, 2015 at 12:01 pm said:

    Thanks for this! I googled Tourette’s and Caffine because I know it makes tics worse and I love coffee. I am a single working mum and have relied on caffine slot since returning to work after my son was born. I also noticed how during pregnancy my tics were much worse. I have also never been to a doctor or diagnosed as having Tourette’s, but the penny dropped about 10 years ago one day and I realised that this was what cause my tics. I have subscribed to your blog/newsletter as its time for me to share with other TS peeps. I have thought of going to a doctor to be officially diagnosed, but I have always felt there was little point as there isn’t really anyway to treat Tourette’s. Please correct me if I am wrong. Thank you.

    • brittanyfichterwrites@gmail.com on March 17, 2015 at 3:55 pm said:

      Thank you so much for subscribing! I hope the information I pass along helps provide you with more information that you’re looking for. If it makes you feel any better, I never had a formal diagnosis either. My mom took me to a child neurologist when I was eight, and he said that we needed to wait a year (they make all kids do that to make sure the tics are chronic, not just passing), but if my mom brought me back, he thought they would be able to diagnose me with Tourettes. My mom never took me back. The tics weren’t debilitating, they didn’t interfere with my education, and at the time, there was a stigma that came with a diagnosis of Tourettes. My mom didn’t want me to suffer from the misunderstandings of others with a label I didn’t absolutely have to have. My tics got worse in college, but they’ve never gotten in the way of my life. I honestly think sometimes living without the label is the way to go if one doesn’t absolutely have to have it.

      There are treatments for Tourettes, but they have different side effects for different people. Given, the medication they have now is definitely more advanced than it was when we were little. Still, it’s less understood than even disorders such as ADHD, and individuals react to the medications in different ways. They’re also working on treatments such as Deep Brain Stimulation (I’m planning on doing a post on that sometime in the future.), but that’s only for the absolute worst of cases. I’ve found that for milder cases, such as mine, careful watch on diet, exercise, and anxiety are most helpful in management. Obviously, my situation has been different as of late, but when this kiddo decides to come (She’s taking her sweet time about it.), I’ll eventually get back into more of a normal routine. The truth is that there is no “one-size-fits-all” way to manage Tourettes. There are ways that work for most people, however, such as staying away from too much caffeine.

      Please feel free to email me anytime if you ever need to chat. If I don’t get back to you immediately, just assume I’m having my baby, and I’ll be back soon. Lol. I love to get to know people.

  • Toure on August 12, 2015 at 5:24 pm said:

    Thankyou for this. I have had tourettes for last 15 years (i am in my mid 20s) and avoiding caffeine has helped. The proof? I had a Costa latte a week ago before going out and I actually had a panic attack! Caffeine also makes me tired rather than alert.

    • brittanyfichterwrites@gmail.com on August 25, 2015 at 4:53 am said:

      I’m so sorry to hear that! Yeah, I finally realized the caffeine was the culprit when I kept having anxiety attacks and tic bursts in church. Now I must comfort myself with decaf. Lol. And that’s interesting about the tiredness. Usually, caffeine speeds everything up so fast for me that I can hardly follow a train of thought for more than a few seconds. It feels like I’m short-circuiting.

  • Ruth on September 19, 2015 at 11:47 pm said:

    I tried giving my son a coffee shake to see if would help him with his ADHD inattentive. It sadly worsened his nose twitch (which I didn’t realise was a tic). Even though I’ve stopped the coffee the tic remains as bad :(
    Feeling slightly guilty….

    • brittanyfichterwrites@gmail.com on September 23, 2015 at 6:18 pm said:

      Aw, don’t feel guilty! Unfortunately, life is full of those days, but that’s why they call it “trial and error.” Honestly, that’s why so many parents and pediatricians consider carefully before they prescribe medicines. What can help fix one symptom of a disorder can often make another one worse. The good news is that the coffee effects aren’t permanent.

      As for tics, they’re tricky little stinkers. I still find myself doing things that I don’t realize are tics until I’ve been doing them for a bit. A few weeks ago, for example, I was under a lot of stress, and I began clacking my jaw. I didn’t realize it was a tic, however, until I’d been doing it for a day or so…a lot.

      Have you talked to his pediatrician about the tic? Unfortunately, I can’t prescribe a sure fix, but I can just say that lots of exercise can really help me fight the tics. You never know if it will eventually disappear either. A lot of them come and go with time.

  • Faith on May 13, 2016 at 3:41 am said:

    I laughed SO hard!! This post spoke to my soul. I loved the way you wrote it because I’ve had many of those thoughts myself when deciding whether drinking coffee is worth it.

    “During the first half hour of the service, I’d considered 4 different church ministries I could help start or be involved in at our church, two or three new blog ideas I could write about, and I was intensely aware that my tics were on fast forward. And I felt great.”

    “…I’ll admit that sometimes I drink coffee just for the fun of it. What can I say? I’m a rebel.”

    Thanks again!

  • Frank on May 14, 2016 at 5:20 pm said:

    While surfing the web to see if there was any more information on this, than i ran into this….I may have a story to tell that may help others.

    Before i tell how caffeine affects me in a negative way it could be useful to understand how i came to that conclusion, so here is a small wall of text :

    I am 28, diagnosed with tourette when i was 7. So 21 years of experience with this syndrome. I have learned how to control about 99% of my tics, either trough suppression or a redirection
    For me tics feel like minor anger outbursts that must happen, one that can only be released by doing a specific action (the tic), relief is always instant after that.

    I have learned to redirect these “outburst” so that a other action will result in the same relief. For example: instead of needing to put my foot down hard (a tic i developed when i was young and still have it) i can also for a brief moment tighten other muscle groups in my leg and foot and feel the tick disappear within that action, i can (with focus) get the same relief.

    This redirection tic is also pretty much invisible in public, you can understand i use this “skill” on a lot of my tics, even though it costs me a bit more energy. For each tic i have developed a almost invisible alternative i can use, it is just more tiresome.

    Here it gets interesting and i can link it to the caffeine 😉

    Being able to steer these ticks makes it possible for me to “tic away” even in social gatherings without someone easily noticing, most never notice at all anymore.
    This does take a constant form of focus in the back of my head, so when things get a little harder i notice that instantly. Caffeine makes it way harder for me to control and steer these ticks! In fact, sometimes redirecting will not relieve me when i had to much caffeine, like the tics than grow a certain resistance.

    The result has been the same for the last 15 years, caffeine (at least for me) has a huge impact on the strength and frequency of my tics!

    My advice, stay off the caffeine for a month and see if you notice a difference. If you experience tourette the same way i do i bet you will.

    Hope this can help someone.

  • Anonymous on January 6, 2017 at 6:52 pm said:

    Hello my name is Linwood. I have tourettes. Caffeine does not sit well with me among soo many other things. My anxiety goes up so bad that I will isolate myself from the world. I hate this condition so much.

    • brittanyfichterwrites@gmail.com on January 24, 2017 at 3:49 am said:

      I’m so sorry, Linwood. Yeah, coffee doesn’t mix well with a lot of people with tics. I switched to decaf long ago, but I don’t even do that a lot because I can still feel the caffeine even in that. If you don’t mind me asking, is it just when you drink caffeine, or do you have other triggers that set off your anxiety as well? I have multiple “trigger” that can set me off.

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