Finding Triggers for Tics & Tourette Syndrome: A Must Read

By | July 12, 2008


The causes of tics go way beyond genetics.
Learn what you can do to relieve them. 

Many people with Tourette syndrome report that there are foods, other items, or situations that make their tics worse. But how can this be, if Tourette syndrome is a “genetic” condition? Research confirms that Tourette syndrome is both a genetic and an environmental condition.

What does this mean? Just think of allergies. Someone can have a genetic predisposition to develop allergic reactions, but, as everyone knows, the environment can greatly determine the types and intensity of symptoms that person will experience. In a similar manner, many people with Tourette syndrome report that they are aware of certain triggers for their tics—triggers that affect the frequency, type, or severity of tics.

It is generally accepted that stress, excitement, and fatigue can aggravate tics. But there are numerous other factors that also may, and the more awareness a person with Tourette syndrome has about potential triggers, the more likely it is that he or she can identify them.

In general, environmental factors include what we eat, see, hear, breathe, drink, touch, smell, and otherwise come in contact with. They can encompass natal and prenatal conditions, temperature and lighting, stress, emotions and fatigue, as well as influences such as vaccines, medications, viruses, and bacterial infections.


ACN’s Role in Defining Environmental Triggers

For years, the Association for Comprehensive NeuroTherapy (ACN) has been collecting information on what aggravates tics, with information coming from patients, families, and health care professionals. The responses have come through questionnaires/surveys, feedback at conferences, and by gleaning information from letters sent through mail and e-mail.

A review of thousands of these responses suggests a set of rather common stimuli, with numerous others being less frequent — or at least more difficult to recognize, and hence less readily reported.

The list that we are providing includes immediate triggers, in contrast to factors like vaccines, or an exposure to a toxin as a toddler. The triggers mentioned can have an impact on the central nervous system of some people with Tourette syndrome, and what bothers one person may not impact another. It is hoped that the discussion that follows, and the preliminary list provided, will empower families and patients to begin collecting their own information on triggers—and hopefully it will also nudge physicians and researchers to consider collecting and sharing similar information.

The Waxing and Waning of Symptoms

When someone asks a doctor why tics can be worse on one day than another, or why they may disappear for weeks at a time, they are usually told that this is what tics do: it is characteristic of Tourette syndrome; symptoms wax, and then they wane. Unfortunately, this circular reasoning doesn’t answer the question.

The tics come and they go because something within the body is changing. The tics are symptoms of that change. How many physicians empower patients to actively try to solve this puzzle, to find the cause of increased tic frequency or severity? Or, how many suggest that people try to understand the conditions existing when the tics have subsided—what might have changed that allowed this tic-free or tic-reduced period? The answer, of course, is very few. Instead, most parents and patients feeling powerless, and they usually accept the condition as a genetic medical problem over which they can have little influence.

Before we go further, it is important to point out that triggers are not always identified by all people seeking to do so. There are presumably different subsets of Tourette syndrome, and in some cases aggravating factors are more readily recognized than in others. Further, numerous triggers may be affecting tics in a particular case, but we just don’t know enough yet to detect them.

Consider the allergy analogy once more. There are times when symptoms that are clearly allergic are never fully explained. As an example, the cause of a given outbreak of hives is often not discovered by the person suffering them. While the rash is recognized as an immune response to some environmental factor, even with careful investigation and professional assistance, the actual trigger is not discovered in a majority of cases.

Finding triggers for Tourette syndrome can be more complex than tracking down a case of hives. Sometimes tics are so profuse that is extremely difficult to tease out one potential inciting situation from another. Or a cause could be so subtle, such as a low-grade chronic infection, that it isn’t even considered.

Why Bother Looking for Triggers?

The purpose of identifying triggers is, of course, so they can be avoided when feasible. Based on anecdotal reporting, the list of potential triggers for tics is extensive. And sometimes people feel so frustrated with the process of watching for triggers that they throw up their hands and quit. Our advice is this: if you have ever observed any situation or stimulus that resulted in the worsening of tics, then you at least know a cause and effect connection is possible. You know that there are factors beyond genetics that are within your understanding and, hopefully, within your control.

ACN suggests you commit to making a serious effort for 6 weeks or more to see of you can find a connection between tics and their triggers. With each increasing discovery, you should feel more empowered. If you make a genuine effort and come up empty-handed, at least you can know that you tried. That’s better than looking back 15 years from now and saying, “I had no idea that the food I was giving my child for breakfast was making the tics worse.” Unfortunately, we’ve heard many such comments.

A father from Massachussets wrote to us (edited for space):

Neither growing up with a chronic tic disorder myself nor having a brother with Tourette syndrome  prepared me for the day when my young son began showing signs of Tourette syndrome.


I was dismayed to learn that progress toward a realistic treatment or cure had not been made over the last thirty years. I refused to put my son on the drugs that my brother had taken himself off of due to negative side-effects. My son also showed mild signs of ADHD. Ritalin was not an option, as that could have aggravated his Tourette syndrome. My only hope was the abundance of success stories in Latitudes

My wife and I noticed that tics worsened after ingestion of dairy products and corn chips (with no apparent reaction to blue corn.) Upon RAST blood testing, he was found to be allergic to milk, corn, oats, and certain fish. After restricting the offending allergens from his diet, we observed a 99% reduction in tics. The only tic remaining was a verbal murmur in the mornings and evenings. After putting a HEPA air purifier in the house, the verbal tics disappeared. We will have additional allergy testing to see if there is a connection there.

Today, six months after his first symptoms, my son is tic-free unless he eats something in school that sets him off. He also has undergone a complete change in disposition. He no longer gets overly frustrated, and he’s happier more of the time. His behavior in school has also improved. The medical profession tends to dismiss such success as spontaneous remission. I know that is not the case, because I can reproduce the tics by introducing the offending allergens back into his diet.

Our success did not come easily but has been well worth the effort. I recommend to other parents that once you know you’re on the right track, don’t give up. If you run into a setback, do more investigating, keep looking, and chances are you’ll find you’ve missed something.

I’ve spoken with some who say they have successfully “tried alternative approaches” but on discussion I usually find that they didn’t fully follow the plan. A typical response was from a mother who learned her child with Tourette syndrome was allergic to peanuts. She commented, “But I couldn’t possibly take him off peanut butter — he loves it too much. In fact, he eats it every day!”

Remember: We Are Biologically Different!

Wouldn’t it be great if all cases of Tourette syndrome were identical? One prescription medication could be dispensed that would act in precisely the same manner for every person taking it. Yet we know this is far from the case. Finding a suitable drug to treat Tourette syndrome usually involves experimentation—trying one drug for a short time, adjusting dosage, then switching or adding different meds in an attempt to achieve tolerable side effects and long-lasting results. Why is there not a one-size-fits all medication for Tourette syndrome? Because people are biologically different.

Please remember this when you review the list we provide below. It’s been said that one person’s  poison is another one’s medicine. With this in mind, don’t give up after exploring a few triggers that we report as being common. You may be dealing with a very different case, with a specific and unique set of triggers that aren’t even listed. Don’t limit your investigation based on what someone else has found.

This list we provide contains both suspected as well as clearly identified triggers. There is, of course, a chance that a respondent could be mistaken in their  identification. For example, one might blame an observable increase in tics on “dairy” because a flare-up in symptoms regularly occurs after eating ice cream. Yet, it could actually be artificial flavors, corn syrup, or chocolate chips in the ice cream that increased the tics — or it could be that all of these items are culprits, including the dairy. In any event, the respondent has at least identified a trigger food that can be avoided, and future experimentation can help determine the specific ingredient(s) responsible for aggravating tics.

Another potential problem that parents often have is that they simply don’t know all the facts. They can’t be sure what their child is eating or exposed to when out of their sight. So, a flare-up of tics can be considered unexplainable—or even blamed on the new family pet — when they were actually due to new paint at school that the parent was unaware of. But usually with a little effort things can be sorted out.

Responses Received on Triggers

What is remarkable about trigger identification for Tourette syndrome to date is that patients and families have discovered aggravating factors — on their own. They have usually done this without the support, guidance, or suggestion of their regular medical practitioner. In fact, their exploration is often met with discouraging remarks or resistance by others. Each person who has contacted us about triggers for tics should be commended for thinking outside the box, and for taking the time to share with others, in hopes of helping.

The environmental factors listed below are roughly grouped according to the rate at which they have been reported to ACN. There is no connection between how common a trigger may be, and what the impact or severity of it is. As an example, exposure to chlorine, which was not highly reported, could potentially cause a more significant reaction than caffeine, depending on individual sensitivities.

See our Tics and Tourette's Book for an Expanded Triggers List
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The items below will give you a good idea of the types of things that have the potential to affect the nervous system.  

Most common triggers reported to ACN  (in alphabetical order):

  • Alcohol
  • Artificial colors and flavors
  • Cleaning chemicals
  • Caffeine
  • Chocolate
  • Dairy
  • Dust
  • Foods (numerous ones)
  • Infections (bacterial/viral)
  • Molds
  • Perfumes/scented products
  • Pollens
  • Preservatives/MSG
  • Stress
  • Sweets/sodas

NOTE: While we did not receive reports from a large number of people who made a connection between a specific vaccination and the start of, or an increase, in tics, research supports a connection. Responses to vaccines may not always be noted immediately, making a cause and effect conclusion difficult. We covered this topic in "Vaccine Information on Thimerosal and More" .

Reported less frequently (but not necessarily less troublesome):

  • Artificial sweeteners
  • Chlorine
  • Clothing/fabric
  • Corn, orange juice, wheat, etc.
  • Dental related (spacers, losing teeth)
  • Fumes from fuel
  • Heat (temperature increase)
  • Flashing lights/bright or fluorescent lights
  • Medications (antihistamines, decongestants)
  • Miscellaneous toxic chemicals
  • New carpeting
  • Noise
  • Paint and thinners
  • Pesticides
  • Smoke
  • Yeasty foods
  • Video games

Special Bonus: Download our Tic Trigger Checklist

How Should You Start to Identify Triggers?

Keep a log and use our Tic Triggers Checklist that is shown above as a free download. Try to make notes on the occurrence or state of tics at regular times during the day such as: on awakening, after breakfast, at lunch (when possible), after school or sports, etc. and before bed. Use a recording method that is comfortable for you. Also, note what might have been responsible for an increase or decrease in tics, such as foods eaten, a special activity,  a particular location, renovations, lawn treatment, etc. If you’re a relative of a child with Tourette syndrome, ask what he or she thinks may have caused a reaction and try to spark an awareness of triggers.

And ... be patient! Let’s say you have a son, and his tics seem worse after a baseball game. Was it the stress of the game? The Gatorade the Team Mom passed out? Fatigue from playing? Summer heat? Pesticides sprayed on the field before the game? It truly takes detective work, and it’s not always easy. Don’t expect to find your answers all at once — and, as previously mentioned, there can be no guarantee that you will find what you are looking for.

ACN recognizes that most people are already stressed, they are already emotionally or otherwise consumed just from dealing with Tourette syndrome on a daily basis. But if connections are found between tics and environmental stimuli, it can be a life-altering experience that was truly worth the effort. Just keep noting the intensity, frequency and type of  tics as well as possible related factors, and watch for a pattern as you go along.

What Next?

Once triggers are identified, the next step is to determine what you’re going to do about them. Parents frequently contact us and say, for example, that they know sweets and foods with artificial colors (or some other item) increase their child’s tics — but, they add, how could they ever withhold these foods from their youngster?

Well ... parents should please understand that a child with Tourette syndrome is sick. His or her nervous system is hypersensitive or hyperexcitable, and it needs to be thought of in these terms. If indeed something is making the symptoms worse—something that can be controlled — then it’s important that you, as the parent, do your best to help the child avoid those items. An adult can make these decisions for themselves. Just as many adults decide that they prefer their tics to the side effects of certain medications, they may also decide to continue indulging in a particular habit that may aggravate their tics. That is their decision. But a child should be provided with the most wholesome environment possible, and this is naturally the responsibility of the parents.

Trust Yourself


ACN Latitudes hears all too frequently that someone was able to identify at least one trigger for tics, and when they told a physician or psychologist, the response was: “That’s ridiculous.” Or, “It’s a coincidence,” and they are told they are “wasting their time” in these pursuits.

This is medicine at its worst. After all, Tourette syndrome is referred to in the literature as a “mystery.” There is no lab result to verify its existence, and the best specialists in the world do not have all the answers to the cause or suitable treatment. Yet, patients and families are coming to professionals around the world and offering clues to help solve this mystery. More frequently than not, they encounter a deaf ear, and may even be discouraged from further exploration. Educate yourself, believe what you see with your own eyes after careful observation, and be an advocate for your family.

See our Dos and Dont’s for the Treatment of Tics and Tourette Syndrome Infographic for more helpful tips!

Find More Tic Trigger Suggestions in our Popular Tics and Tourette's Book


Anything to add or ask about this post?

balloon tsa 1AIt’s your turn -- what are your thoughts? Please take a minute share your thoughts in the comment area below or discuss it in our forums. We would love to hear from you.


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About Sheila Rogers DeMare, MS

Sheila Rogers DeMare, MS, Founder and Director of the nonprofit Association for Comprehensive NeuroTherapy (ACN), is a leader in the field of integrative therapies for neuropsychiatric and behavioral disorders.

View all posts by Sheila Rogers DeMare, MS

14 Responses to “Finding Triggers for Tics & Tourette Syndrome: A Must Read”

  1. Melissa Says:

    Why aren’t immunizations on the lists above?

    Reply

  2. Sheila Rogers DeMare, MS Says:

    Melissa, that is a good question and I have just added it as a note under the common triggers reported area. The reason it was not there was this list was based on reports we received. The actual connection between tics and a particular vaccination episode was not often reported. However, research does support the connection and I’m glad you brought it to our attention. Thank you. If you have more to add to this issue, please do!

    Reply

  3. Melissa Says:

    I have 11-year-old triplets. Two of them are ADHD and have had intermittent tics. One of these two did the Cunningham panel (while it was still being researched) and registered in the PANDAS/PANS range. She has always been terrified of shots. Maybe she has a reason to be. She always tics for weeks after vaccines. Nothing in particular, just all of them. I think it’s probably that they burden her (probably overactive) immune system, and tics are the result.

    Reply

  4. Debbie Says:

    I’m sure a percentage of infants receiving the immunizations required by law before the age of two is the reason for this and many other horrific conditions. there may be some genetic issue as well that makes the immunizations unsafe for some individuals.

    Reply

  5. jackie Says:

    I know i can live without gluten (which dramatically increases stimming and certain tics), but as i’m trying to be vegetarian i’d like to know if there’s a / any medicine that can counteract fructose-triggered tics

    Reply

  6. Boo Says:

    All of my kids had immunizations and only one has tics. I was immunized as a kid and I don’t have tics. Since the majority of the kids in this country are immunized and only a small percentage get tics, I would think that wouldn’t be a cause. In fact, I’d be more afraid of the diseases that immunizations fix than tics.

    We’re trying to rule out allergies and food sources right now by eliminating the basic ones, scheduling a test at the doctor, and then slowly bringing back foods he isn’t allergic to. It’s going to be tough, but we can do it because he is more sick of the tics than he has a love for sugar, dairy, and wheat (well for today least lol) I’m also not ruling out certain limitations of amino acids and vitamins/minerals so we’re going to increase those as well in a way that doesn’t introduce sugars and yeast if we can.

    Reply

  7. Sheila Rogers DeMare, MS Says:

    Hi Boo, it sounds like you have a good plan going for looking into food allergy/intolerance and balancing nutrients. I hope you’ll let us know how it goes.

    A suggestion: don’t forget about the home environment–some kids have chemical sensitivities, from scented candles to fabric softeners or strong cleansers. Or they react to pet dander, mold, etc. Meanwhile others in the family may not show any reaction.

    It happens that studies on vaccines with thimerosal as a preservative showed a connection with an increase in tics–but of course that would’t be the case for everyone. You can see our review article here http://latitudes.org/vaccine-research-thimerosal-tics/ Fortunately thimerosal has been removed from most vaccines. We don’t know of any research on current vaccines and tics. Of course as you can imagine, everyone is different with what they react to.

    We really wish you the best in helping your son.

    Reply

  8. sheila Says:

    Im 32 and I have tics like blinking eyes, twitching nose and some of my body parts like my fingers and toes and even my whole body. It’s awful, I know people notice it and they are just shy to say something. My family makes fun of me since I was little. I barely remember when did it started, I think in between 7 to 10 years old. I remember it was worst in my younger years and I tried to hide when I started to be aware of it. My family thinks its just a habit, I too believed it is. I was unaware of tics and tourettes before.I also see other people having a significant eye blinking just like mine. I was starting to think that there is really something wrong with me and its not just a habit. There were a lot of moments in my life that I would cry and feel so emotional that why of all people I am the only person that has this. Why do my brothers and sister dont have it. Why do people I have met never have these undesirable movements? Until I came accross to a certain documentary about tourettes syndrome. I was in my late 20’s till I found it out. I was so ignorant and I hated it. I realized mine isnt not bad at all compare to what I saw on the documentary film. I could hide it sometimes especially when i was in school and at worK. But my eye blinking is very noticeable. From then on after ai learbed about tics and tourettes, I kept searching on answers. And most of the articles I read said about no cure and about drugs that can help lessen the tics and I didnt want it because of the side effects. Now I have a 2-year old baby and im afraid she will have tics in the near future just like mine. Is there a bigger possibilities that she will get it? Sometimes when she s about to sleep I see her body twitching but it isnt really bad or maybe Im just overreacting wen I see her twitch for a second. ShouLd I fear about her sudden movements? Its so rare though that I see anything undesirable. She is a picky eater so most of the time, she is on milk.
    Anyway, I just wanna thank all of u and this article for giving me little hopes. I hope avoiding those allergens in food, chemicals and etc will somehow helps me.

    Reply

    • Sheila Rogers DeMare, MS Says:

      Hi Sheila, thank you for writing your experience and telling us about your 2-year old. Sorry you have had to deal with it since childhood, especially with people not understanding; that can make it all so much worse. I know people are often worried when they have had a tic disorder, that they will pass it to their child. How are you doing now, and your little one, after thinking about possible triggers and maybe trying some different things?

      Reply

    • Andra Says:

      Sheila, I am not a medical professional, just another mom. I just wanted to assure you that it is completely normal for your 2-year-old to twitch as he/she dozes off to sleep. This has nothing to do with tics or Tourette’s Syndrome.

      Reply

  9. William Bellin Says:

    I’m a board certified neurologist, and although I applaud you for appearing to want to help patients, your irresponsible suggestion that any literature suggests a link between vaccines and tics, and your clear commercial imperative to sell your services makes me sick.

    Reply

    • Sheila Rogers DeMare, MS Says:

      I’m not sure this is actually a legitimate comment from a board certified neurologist. But let’s assume it is. . .

      Dr. Bellin, you imply we made up the information on tics and vaccines. Perhaps you did not do a literature search before accusing us of being irresponsible? This is the information we have on our site about vaccines and tics: http://latitudes.org/vaccine-research-thimerosal-tics/ These are published studies on thimerosal that no one seems to talk about. We recognize in the article that thimerosal has been phased out of most vaccines, but many readers could be impacted.

      Vaccines are a complex issue and at no point on our site do we advise people not to get vaccines.

      We also carry this interview with Dr. Andrew Wakefield: http://latitudes.org/defense-andrew-wakefield/

      If some people report that they have noticed tics as an adverse reaction to a vaccine, we have no reason not to report that.

      I found it interesting that you accuse us of having a “clear commercial imperative” to sell our services. We are a small nonprofit organization with a free website and free forums, without a regular salaried staff.

      Fortunately we have a talented and very dedicated volunteer webmaster. We offer a very inexpensive premium option for those who would like it.

      It costs money to run a comprehensive website. We have started a fundraising effort to strengthen our organization and raise funds for research.

      Reply

  10. Lisa Says:

    I just want to say thank you! When our 7 year old daughter was diagnosed with Tourette’s /OCD we did what most parents do. … go to a neurologist and try pharmaceuticals. Our daughters tics went from bad to HORRIBLE on meds. After trying 2 different ones, I became a desperate parent looking for another solution. It was this website that gave me hope. We now see a Biomedical doctor and after getting the test results, we incorporate a special diet and supplements. She is doing much better. She still struggles with complex tics when she is tired, but life for her has improved. I’m always reading and trying to figure out what causes some of her tics and often it is a mystery, but reading about the testimonies of others gives me hope that we can still make more improvements with our daughter :) thank you!

    Reply

    • Sheila Rogers DeMare, MS Says:

      Lisa, it’s always rewarding and encouraging to hear from people who found help for their family on our website–in your daughter’s case for Tourette’s and OCD.

      It’s because of dedicated parents like you that this information is reaching others searching for help. I hope you continue to find new answers in your quest to help your daughter. Having a biomedically oriented doctor help guide the way, as you have done, can make a big difference. Thank you.

      Reply

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