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.
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):
- Artificial colors and flavors
- Cleaning chemicals
- Foods (numerous ones)
- Infections (bacterial/viral)
- Perfumes/scented products
Reported less frequently (but not necessarily less troublesome):
- Artificial sweeteners
- 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
- Paint and thinners
- Yeasty foods
- Video games
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.
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.
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.