Why the Tourette Association of America Should Be Investigated: Part 8

Sheila Rogers DeMare, Director Association for Comprehensive NeuroTherapy

The TAA/TSA has failed to alert the public and medical community that environmental triggers can worsen Tourette syndrome symptoms. Their negligence is indefensible.

Triggers are factors that can cause or aggravate symptoms. A classic example, widely accepted, is that bright, flashing lights can trigger seizures and migraines in some people.

Triggers differ from one person to another, yet common factors are often reported for specific conditions. The degree of sensitivity a person has to a trigger may fluctuate. Once triggers are identified, avoidance can improve symptoms, sometimes dramatically.

Triggers for motor and vocal tics have been reported to the national Tourette Syndrome Association (TSA) by families and doctors for more than 40 years and by our organization since its inception, over 20 years ago. Yet the TSA has withheld this information.

Why has the TSA not told the medical profession and the public about triggers for tics? Is it because triggers contradict and complicate their (incorrect) claim that Tourette symptoms “mysteriously” wax and wane, and nothing can be done about this pattern?

The TSA supports the surgical placement of electrodes in the brain to treat tics, and lengthy behavioral training as a tic therapy. Yet they dismiss the obvious.

Knowledge of environmental triggers affecting the brain is nothing new. But the TSA has stuck its head in the sand and denied the existence of triggers for tics.

A Call for Leadership: When by 1996 the TSA had done nothing to share information on triggers or advance understanding of this issue, as director of ACN Latitudes I wrote an open letter to the TSA, “A Call for Leadership.” In part, it challenged the Tourette Syndrome Association to:

• Warn all TSA professional and lay members about the potential for environmental stimuli to cause or aggravate TS symptoms.
• Encourage members to collect data related to environmental triggers.
• Develop a flier on avoidance, assessment, and treatment of environmental factors that would be provided to the media, put on the internet, and included in all introductory literature packets.

The TSA medical board met to discuss my editorial letter and sent a written response to me in 1997. After this exchange I watched in dismay as the years passed with no action from them. Young children who could have been helped grew to adulthood. Many brokenhearted parents unwittingly allowed triggers to worsen their child’s tics, because they had no idea diet, exposure to toxic chemicals and allergens, and other factors might be affecting symptoms.

Our Tic Trigger Survey of 1,794 people

Due to the lack of action by the TSA, in 2003 our organization conducted an online survey on tic triggers and included a list of numerous triggers families had reported to us. Website visitors were invited to select which items they suspected aggravated or caused tics in themselves or their child. The program allowed only one response per computer, so we were confident people were not over-reporting.

Triggers for tics collected by the survey range from foods and food additives to chemical exposures, consumption of alcohol, allergens, scented products, bright lights, sensation of heat, and many more. These factors (including diet) all fall under the medical term “environmental triggers.”

The survey is explained in detail in our book Natural Treatments for Tics and Tourettes: A Patient and Family Guide. See a summary of many of the triggers collected, as well as helpful tips in our online article: “Finding Triggers for Tics: A Must Read.” This was ground-breaking research with excellent participation from the Tourette community.

The TSA medical and scientific advisory boards were aware of the results but didn’t care. They didn’t use the findings to conduct their own studies nor make a statement on triggers. Many of the triggers people independently documented through our survey on tics overlap with those reported for other neurological conditions. As an example, see these two sites for lists of migraine and headache triggers: 1) NIH  (with an emphasis on food triggers); 2) The Mayo Clinic.

Awareness of triggers can make a tremendous difference!

Just as it is inadvisable for someone with grass allergies to stand outside while the lawn is being mowed, someone with Tourette’s whose symptoms are aggravated by triggers should avoid them when possible—or at least have the choice to do so.

A successful businessman with Tourette’s contacted me about a painful chronic neck jerk that was so severe it was damaging his vertebrae. He said he’d been to leading neurologists worldwide looking for relief. When he told a physician last month he’d observed that drinking just 1/4 cup of red wine could make his tics worse, the neurologist replied, “It’s impossible that red wine could do that!” Note: Red wine is a proven trigger for migraine.

The first step is to try to identify any triggers. Unfortunately, the ongoing message from the TSA that Tourette syndrome is mysterious and there is nothing people can do to reduce tic symptoms has disempowered the Tourette community.

Most parents don’t know to start looking for triggers in their children. Instead, when the tics get better or worse, they simply accept this as “waxing and waning” as taught through TSA literature without searching for a cause-and-effect relationship.

Even when families or adults with Tourette syndrome or other tic disorders notice that something increases the severity or frequency of tics, their doctors often insist they are mistaken. Why? Because physicians take their lead from the TSA.

Professional help may be needed to pinpoint some triggers. Not everyone may find them, but keeping a log is a good place to start. Efforts to address any underlying causes for the hypersensitivities (i.e., allergies, nutritional imbalances, inflammation, infection) are additionally important and have the potential to reduce the overall sensitivity.

The TSA has been blinded by their double-blind mentality

The TSA tends to hide behind a claim that double-blind studies are needed before sharing any information. Have they been blinded to common sense?

• Do children need to be exposed in studies to toxic cleaning products or pesticides before we can accept reports that toxins have sometimes been noted to aggravate tics?
• Do we need double-blind studies on multiple types of foods before simply telling families and doctors that many people report tic-reactions to different foods?
• Food additives have already been proven to affect behavior and hyperactivity. Do we need to conduct years’ worth of similar research before we can accept that some people report a connection with chemical food additives and tics?
• And how should exposure to gas fumes, formaldehyde, and chlorine—all reported triggers—best be studied?

In our second article of this series, we promised you we’d explain why some doctors “wonder how the TSA advisory board members can sleep at night.” The charts below give you one clear reason. Look at the difference between the triggers you can learn about on the TSA website by searching “triggers” and by searching on ACN Latitudes:

The TSA has started putting occasional articles in their newsletters by members who write that they feel better on a healthy diet or perhaps they know they should stay away from toxic chemicals. The TSA may feel this is broadminded of the organization. However, this scattered and minimal approach to the issue of triggers is much too little, much too late.

The national Tourette Syndrome Association has lost credibility as a world leader sharing information on the prevention and treatment of Tourette syndrome. They have withheld key information on triggers and failed to put families first.

Concluding articles in the series:

Part 9 : The TSA controls and censors the media message of our organization, blocking information on integrative therapies for Tourette syndrome from reaching the public.

Part 10:  Moving forward.