Focusing on Tricky Tic Triggers Part 1

Sheila Rogers DeMare

Sheila Rogers DeMare is the founder and director of ACN Latitudes.org and the author of two leading books on Tourette syndrome. 

When someone is dealing with tics or Tourette syndrome, ACN Latitudes strongly promotes the practice of looking for symptom triggers. It’s well- established that tics tend to come and go. The medical community calls this “waxing and waning,” and patients and families are told that there is nothing they can do about this. It is a mysterious phenomenon! Yes, the tics come and go. But what made the tics worse? Further, what conditions allowed them to improve?

When someone gets a headache or stomach ache, they wonder what caused it. When a rash breaks out, we question what could have triggered it. It’s common sense to look for a cause of symptoms. If you receive the misguided advice that there’s nothing you can do for tics, ignore it and start looking for answers.

The following is excerpted from the chapter “Tricky Triggers” from our book, Stop Your Tics by Learning What Triggers Them.

Sometimes you get lucky in your search for tic triggers. You might, just as an example, reduce sugars and remove synthetic additives from the diet and find that tics improve dramatically. Or, you might connect the dots and realize that tics started up when allergy season began or after starting kitchen renovations that released formaldehyde or other toxins into the air.

However, it typically takes some trial and error to come up with all the answers you need. For getting started quickly with foods, allergist Dr. Doris Rapp suggests you list the top five favorite foods and two favorite beverages. Then, stop consuming everything containing ingredients in these foods for a week or more to see if symptoms improve.

If so, then add them back, one at a time over a number of days, to see whether that helps pinpoint specific causes of food-related symptoms.

Influences from different types of trigger sources may occur simultaneously. In these situations, logging your observations can be essential. Foods are rarely eaten in isolation. We often consume a few or more items at the same meal, with several ingredients within a given dish or product.

Let’s say you notice that tics increased after breakfast. Well, what specifically was bothersome? If it is not clear to you, it is best to document each item, including the ingredients, so you can cross-reference later when you have time to compare foods and symptom changes. (Consider noting whether the item was or was not organic.) On the same log, write down any special events or environmental exposures that occurred.

Similarly, if there is an increase in tic symptoms after eating pizza, you should examine: Was it the wheat and/or something in the crust, like yeast or dough conditioner? Was it tomato or something else in the sauce? Was it a seasoning? Cheese? Added toppings? The answer is not always easy to tease out, but it can be done, and having a good log will help. Keep an open mind during this process. And, do not assume that because others report that something affected their case, these same items will apply to you.

Some people initially zero in on items that are often reported as triggers, not just for tics, but for other conditions such as ADHD and autism. Casein (in milk) and gluten are frequently targeted. The fact is, for some people, avoidance of foods containing gluten and/or casein is an important key to their success in reducing tic symptoms. Yet for others, these dietary restrictions are not required.

Just as one youngster can eat peanut butter every day, while a minuscule amount of the same food will have tragic consequences for a small percentage of others, we are all biologically different.

When triggers get complicated

Some situations can confound trigger hunts. When a person is exceptionally fatigued, anxious, or has an illness, a potential trigger will typically be more bothersome than when the same exposure occurs while rested, healthy, and calm. Similarly, circumstances like being in the middle of an allergy season or being overloaded with other troublesome exposures can make some people more reactive at one time than another.

The difference in response levels during varying scenarios can be confusing, possibly causing you to question if an item really is a trigger, even when it is—and vice versa. The answer for this possibility is to watch for a pattern over time.

Infections can affect gut health and, in turn, make someone more prone to food and immune reactions. Also, a viral, parasitic, or bacterial infection has the potential to create brain inflammation, with tics as one of the consequences. As an example, Lyme disease, caused by a bacterium transmitted from ticks, can cause symptoms that are sometimes misdiagnosed as Tourette syndrome. PANDAS is an acronym for a childhood condition known as pediatric autoimmune neuropsychiatric disorder associated with streptococcus. This condition is an autoimmune response to strep that causes inflammation in the brain. (See pandasnetwork.org for information on PANDAS)

When dealing with PANS, Lyme, or other infections, extra vigilance is needed for documenting dietary, allergic, and environmental triggers while pursuing medical treatment. Avoid any identifiable triggers, as it’s not unusual to observe a heightened response to triggers during this time.

We offer free resources to help you monitor symptoms and exposures, helping you find triggers. See here.

This topic will be continued in our next newsletter