Caffeine can make Tics Worse in Tourette’s Syndrome

Does caffeine make tics worse? For me, definitely. For you, possibly.

I was in my local coffee shop. I ordered a ‘weak latte’ and headed back home to study. Before I knew it I was on the phone to my GP during a major panic attack with increased tics.

I know that caffeine affects everyone differently. I can only share why I decided to switch to decaf, and a statistic that links caffeine with an increase in tics in some people with TS.

Intro image

I have recently moved to West London. There is a lovely canal walk on my doorstep and it has been a lifesaver in lockdown. With coffee in hand I walk rain or shine.

Selfie along the canal

In London, this is the closest I get to being by the water. It’s no Venice, but it does have it’s own unique charm.

A picture of a canal boat with a train passing over a bridge above it

However there has been a couple of occasions when I was midway through a walk and had to turn around. Not because of weather or a gang, but anxiety.

This has been affecting me more and more lately, and usually comes after a cup of coffee.

On top of anxiety, I do notice my head nodding more as I walk. That and frequent humming tics.

Whether anxiety triggers tics or tics triggers anxiety, I get both. And caffeine most certainly is a trigger.

I went home and Googled ‘caffeine and tics’

The following statistic is from pubmed.gov:

Conclusions: Results from this first survey investigating the influence of special foods and drinks on tics demonstrated that 34% and 47% of responders, respectively, assessed that coffee and coke deteriorate tics.

PubMed: The influence of different food and drink on tics in Tourette syndrome (1)

The study also states that ‘A significant negative correlation (tic improvement) was not found.’

It seems that some people find tics worsen with caffeine, however rarely (if ever) do tics get better with caffeine.

When I looked into caffeine and the effect on those of us with Tourette’s Syndrome, there really wasn’t much out there other than Reddit forums.

Montage of Reddit posts linking coffee with TS

What is caffeine?

Caffeine is a stimulant. A stimulant works on the central nervous system and increases our alertness, making us feel good as a result.

An office worker sleepy before caffeine and working hard after coffee

This is also why it isn’t a good idea to have it before sleep. It is added to tea, coffee, soft drinks, foods as well as medication, sometimes catching us off guard.

Caffeine makes the brain more sensitive to dopamine, a ‘feel good’ chemical, which explains why I liked a cup before getting started on my daily tasks. It motivates us and gets us out of a rut.

It is also addictive, another reason why we crave it so much and feel moody when we don’t get our fix.

When I realised I had to quit caffeine

I can only really offer my experiences with caffeine outside of this study. I have always loved the taste of coffee, and put up with the increase in tics if it got me moving.

However, there have been at least three occasions in which this has spiraled into panic attacks, two of them resulting in me contacting my GP for help. All of them were shortly after an ‘innocent’ cup of joe.

My most recent was in February 2021, so pretty recent. I have updated this post as a result.

A picture of my coffee cup as I overlook the canal

The common theme is I feel a tremble throughout my body, like an internal earthquake. I panic, the shaking leads to increased tics. I worry that I am losing control of my body and mind, and I start to run.

At one point in my last panic attack I almost shouted ‘help!’ to the construction worker passing my window, and I felt an overwhelming urge to jump out to escape. The problem was I was trying to escape my own mind, and that is the scariest feeling of all. Not being able to.

Whether jumping out the window was a complex tic, a fight-or-flight response or an intrusive thought, what I do know is that caffeine was a catalyst.

I did four laps of my local park, spoke my GP and waited for the caffeine to leave my system.

It might be a good idea to quit caffeine if you have TS

There isn’t a lot known about Tourette’s Syndrome, which explains the lack of articles associating caffeine with tics. But what is clear is that it does have a negative effect on at least some people.

Let’s go back to the study mentioned at the beginning of this article. A survey conducted with members of a Tourette oupatient clinic and self-help group in Germany found that 34% believed coffee made tics worse and 47% believed soft drinks did the same. Also, not one person stated that these beverages improved their tics.

Of course, people react differently to consuming certain food and drinks, some better than others. But from this survey and the countless forums it is reasonable to suggest tics do indeed worsen after caffeine for some. However this doesn’t seem to stop people drinking coffee.

Caffeine is additive, which can be a problem. Studies show there is an increased risk of substance abuse (2) when Tourette’s is present, so addiction is something to avoid. TS already makes us act on impulse, so throwing an addictive substance in the mix can hardly be good.

Poll results from the R/Tourettes community

I asked the 12,000+ strong R/Tourettes community if caffeine affected their tics.

264 people voted (including myself as I can’t seem to see the results live unless I vote) on the poll.

I asked, ‘Does caffeine make your tics worse?’.

Reddit poll results

136 people (again, including myself) believe that caffeine makes tics worse. 101 of those still consume caffeine.

63 people don’t see a change, and 56 people don’t drink caffeine.

Only 9 people felt caffeine reduced tics.

Pie chart displaying results

One issue I have with my poll is the option ‘I don’t drink caffeine anyway’.

As I used the word ‘drink’, some voters may have only considered their coffee or soft drink consumption.

I opened the poll with a couple of paragraphs explaining my situation, and how coffee has made my tics worse. Voters may have been focused on answering about drinks more than other caffeine products.

But regardless the poll has been valuable, and reflects the earlier poll results. Caffeine affects some people with Tourette’s and tic disorders.

Decaffeinated alternatives for tic relief

I now take my coffees decaffeinated and I can tell you it has made a big improvement in my daily life.

My tics aren’t as intense and I am less jittery. I can actually concentrate more. There is no ‘caffeine crash’ either, my state seems less like a roller-coaster with ups and downs and more stable throughout the day.

A to-go coffee cup with 'decaf' written on the side of it

Also, I have been experiencing a ‘placebo effect’ with my drink.

I know there is no caffeine, however I love the taste of coffee and that is enough to put me in a good mood on a morning. What is better than waking up with the beautiful aroma of coffee? I get all the feel-goods from that, my senses are stimulated and this sets me up for the day.

Caffeine was just the extra that I didn’t need.

There are many great decaf options out there and more appearing all the time. More of us want to make conscious decisions about the products we consume, and for this reason companies are making sure to offer products that reflect this.

Tics in children may appear much stronger after school if the child has been consuming too many caffeine products. This can be easily avoided by buying decaf alternatives and speaking to teachers about the condition.

Also children’s parties are a haven for sugar and caffeine. Speaking to the parent or party organizer about providing alternatives ensure that tics are kept under control during and after the event.

Everything in moderation including moderation

Now I admit, I am not 100% clean. If my coffee shop has ran out of decaf and I have been in a long line, I will take the hit. But I drink it very slowly, with water. Everything in moderation including moderation.

A picture of me sitting on some steps with a coffee

But reducing the intake made me realise how much I don’t need it, and making these changes can have a positive effect on efficiency, stress levels and alertness.

Also, it’s wise to cut out caffeine slowly to avoid withdrawls. Maybe having a cup on a morning and then switching to decaf after 12 noon. Skip the soft drink at lunch. Slow and steady changes will be easier to maintain and not risk a relapse.

Conclusion

Tourette’s is different for everybody, as are the things that make it worse. For that reason this post cannot take a ‘one size fits all’ approach, but will hopefully convince you to ignore the haters and give decaf a try. It may be of benefit, or you may not see a difference.

The only way to find out is by giving it a go. You may find that like me, the taste is enough to give you the boost needed. Less tics, less shakes and less stress.

Should you give up caffeine? Maybe. Should you give up coffee? Absolutely not!


Additional Sources:

  1. pbmed.gov: Müller-Vahl KR, Buddensiek N, Geomelas M, Emrich HM. The influence of different food and drink on tics in Tourette syndrome. Acta Paediatr. 2008 Apr;97(4):442-6. doi: 10.1111/j.1651-2227.2008.00675.x. Epub 2008 Feb 27. PMID: 18307557.
  2. The Recovery Village: Tourette Syndrome and Substance Abuse

Leave a Reply