Stop Your Tics By Learning What Triggers Them
Like most in the Tourette community, I believed that my child’s tics were inevitable and out of our control. A new world has now opened up for us.
Imagine a panicked father rushing his daughter to the emergency room every time she has a life-threatening asthma attack. How would he feel to learn, many years later, that exposures to sulfite preservatives in foods, or cat dander, or smoke from his home fireplace might have triggered some of these attacks? He would surely wonder how many traumatic crises could have been avoided if he had been aware of potential triggers for his child’s asthma.
Or, think of a mother whose son suffered painful migraines for years. This mom would understandably be upset to one day discover that certain favorite foods she served had triggered some of his headaches. We can picture her frustration: “Why didn’t someone tell me this could happen?”
Fortunately, these scenarios are not as likely today as they were 20 years ago. Standard medical protocols for treating asthma and migraine now include the topic of environmental, dietary, and allergic triggers. In fact, a quick Internet search yields multiple lists on mainstream medical websites detailing potential triggers for both asthma and migraine. Yet, there is no such information widely shared about triggers for tics.
Now imagine you are the parent of a young boy who developed serious symptoms of Tourette syndrome — a tic disorder with both verbal and motor (movement) tics. The child is anxious and upset about his ongoing jerks, twitches, and uncontrollable vocalizations. He repeatedly begs you to help, to make the tics go away. You would do anything you could to make them disappear, to restore calm and confidence to your child. But you do not know what to do. Actually, you have been told by doctors that there is not much you can do!
Then, one day, you learn that the food you are putting on the family breakfast table is making your child’s tics worse for the rest of the day. You find that certain personal products are triggering symptoms, that the orange Gatorade® at soccer practice sets tics off, and exposures to common allergens are aggravating the tics. And that is just for starters.
This was our family’s experience. How did I feel when I saw this firsthand? I was frustrated not to have known that tics could be affected in this way. But, I was also grateful to have a chance to begin helping my child by nailing down triggers and eliminating as many as we could. It was not long before we had the symptoms under control with the help of an integrative allergist who focused not just on allergy therapy and nutritional balancing for my child, but on a range of allergic and environmental triggers, including diet, that can affect the nervous system.
While there is often an overlap among influences to which people with tics react, triggers need to be determined at an individual level. What bothers one person may not affect someone else. One person may be hypersensitive to a multitude of factors, while another might find just one or two issues to be particularly problematic. Some people may not be aware of any triggers. The search for tic triggers can be well worth the effort, and lifestyle changes to address them often bring about a positive change in symptoms.
Types Of Tic Disorders
Tics are involuntary and repetitive movements or vocalizations that tend to be sudden and rapid. Movements, also referred to as “motor tics,” as well as vocalizations can be simple or complex in nature, and can range from mild to severe. A few examples of the many ways tics might be expressed:
Examples of simple motor tics: neck jerks, eye blinking, nose twitches, shoulder shrugs, lip biting, muscle tensing, jaw snapping, tongue thrusting, eye rolling
Examples of complex motor tics: twirling or jumping, skipping, hopping, imitating someone’s actions, chewing clothes, twirling hair, obscene gestures, and smelling or touching something. Also, self- injurious behaviors like touching hot or sharp items, hitting self
Examples of simple vocal tics: a light cough or throat clearing, repetitive humming, grunting, a loud shout, a yelp or bark, hissing, snorts, squeals or screams, tongue clicking, gasping
Examples of complex vocal tics: calling out words, repeating one’s own words (palilalia) or other people’s words (echolalia), or the use of obscene words (coprolalia), and talking to self
Vocal tics can interrupt the smooth flow of a normal conversation, or they can occur at the beginning of a sentence much like a stutter or a stammer.
People often feel a sensory urge to tic, and many report that they can temporarily postpone some tics. After ticcing, there is usually a sensation of released tension. Tics might be so minimal that they are barely noticed, or so intense that they are physically painful or damaging to the body, disruptive to daily life, and/or emotionally distressing. Some tics are more socially unacceptable or embarrassing than others.
A range of medical conditions can be associated with tics — such as a thyroid disorder, restless leg syndrome, bacterial or viral infections, Lyme disease, dystonias (uncontrollable muscle contractions), or seizures. For that reason, consultation with a neurologist or other qualified physician is recommended for a definitive diagnosis of tic symptoms. When major bouts of tics start up suddenly, it is important to consider causes, such as an adverse reaction to medications, or a toxic exposure, or an infection (such as strep, as one example).
The Gift Of Discovering Triggers: My Story
My 8-year-old son’s symptoms of vocal and motor tics developed gradually. I watched helplessly as symptoms changed from simply being troublesome to creating emotional, social, and physical distress. Dealing with the tics, which were accompanied by uncharacteristic mood swings, began to consume my family’s days.
First it was eye rolling and winking, then persistent shoulder shrugs. Strong neck jerks came next, followed by occasional full-body tics. He also had vocal tics and developed some self-injurious behaviors. After trying to conceal or control the tics at school, he would return home in a hyper-stressed state. Compounding all this were obsessions that seemed to have emerged from nowhere. My boy’s social life began to suffer, and self-esteem bottomed out.
If a mother’s tears could have cured him, I would not have written this book. I was a single parent in Florida with three kids, working full-time as a school psychologist, and desperately wanting to help my child.
We consulted a neurologist who was highly recommended for dealing with tic disorders. After making the diagnosis of Tourette’s in my son, the doctor told us that the condition is genetic and there is no cure. He advised that medications could be used, but he warned against their side effects.
We should be aware, he said, that the tics will come and go on their own, and the term for this is waxing and waning. He added with a smile that I am sure was meant to be comforting: “No one ever died from Tourette syndrome.”
We returned home from the clinic feeling more frustrated and hopeless than when we had arrived. A no-cure label applied to my child’s symptoms was of little use. I needed to know what I could do to truly help my son.
I wondered: How could a happy-go-lucky, terrific kid now have an out-of-control body that was impacting so much of his life? Why was this happening, and was I just supposed to accept it? The entire situation did not make sense. I began searching for alternative approaches, which was not an easy task in the 1990s. Little was available online, so I scoured books and literature. The most accessible information was on drug therapy, and after reading about their side effects, I knew they would need to be a last resort.
Meanwhile, symptoms worsened. One day I was at home when my son came through the front door with major motor and vocal tics. He was in extreme distress; the symptoms were much worse than usual. He went to his bedroom to be alone, and just then the phone rang. It was my sister, a neurologist, calling long-distance. When I heard her voice I burst into tears. I simply could not bear watching my son tormented in this way. She knew we had already consulted a specialist, and she calmly said, “You never know, Sheila. Maybe someday you will be able to help other people who are dealing with Tourette’s.” Nothing could have seemed more unlikely.
When the school year came to a close and summer break began, we drove to a small condo on the west coast of Florida for a week’s vacation. I told my son and his two older sisters that we were going to celebrate school being out, and they should enjoy themselves. I gave them permission to spend lots of time in the community pool, and to walk to a nearby convenience store for a treat each day. I also lightened up with meals, allowing more “fun” items than I usually would.
Surely the tics would be better, I thought. My son could now relax, with no peer pressure or school work. Yet, to my surprise the symptoms were worse. I was heartsick and confused.
That evening I watched my boy as he stretched out on top of the bed and closed his eyes. He looked so sweet in his summer shorts, his skin tanned after a week in the sun. But I was soon dismayed. For the first time, his entire body was in spasm. His arms, legs, and back all had little twitches coming and going. I instinctively dropped to my knees with a desperate prayer — a prayer that when I took my child back to the doctor for the drugs that we could no longer avoid, he would still be able to function and have a happy life.
Once back home and before connecting with our neurologist, I fortunately heard from another mother in Florida, Ginger Wakem. She had started an informal alternative therapy network, with the goal of sharing information about an allergy connection to tics. Ginger told me about a doctor who had reversed her son’s severe case of Tourette’s. I made an appointment right away. Now retired, Dr. Albert Robbins, an allergist and environmental physician, provided specialized allergy therapy for my son and also taught us about food reactions, nutritional imbalances, and chemical sensitivities. I will forever be grateful to both Ginger and Dr. Robbins. For the first time, I had new hope for my child.
We learned how the immune system, the environment, diet, and allergy can affect the nervous system and the brain, triggering tics. When these types of issues were addressed, tic symptoms disappeared, along with the behavioral and emotional concerns. When we were lax, issues began to resurface, at which time we would quickly tighten up our efforts. Within a few weeks, there was observable improvement and we knew we were on the right track. Within six months, a devastating condition had been brought well under control. We were thrilled with the results.
Prior to this experience, I did not know people could react negatively to low levels of common toxins like cleaning products and scented items. I had no idea that sugars, certain foods, allergens, and synthetic additives could affect behavior and aggravate tics. I did not know that the health of the digestive system was connected to the functioning of the brain and nervous system.
If someone had asked me before this healing if I had ever noticed triggers for either my son’s tics or his behavioral changes, I would have said no. I never knew to look! In fact I was not even aware that he was allergic. Neither his pediatrician nor his neurologist ever brought up the possibility.
I thought back to our tic-filled vacation week. The things I had assumed were great ideas — lots of time swimming in the (chlorinated) pool, and being able to enjoy junk food treats that were not usually allowed at home — were in fact harmful for him. It was a real eye-opener, but only in retrospect.
Efforts To Spread The Word: ACN Begins
Like most in the Tourette community, I had believed that my child’s tics were inevitable and out of our control. A new world had now opened up for us. The treatment for my son was a complete success, and medications were never needed.
Without a doubt, the recovery was not a coincidence, nor did he outgrow the problem. His body was healed. While nutritional balancing and a specialized allergy treatment were important parts of his therapy, identifying and avoiding triggers played a critical role. If we had overlooked his triggers, full recovery would not have been possible.
Tic disorders can impact all aspects of life, from achievement and careers to relationships, family life, self-esteem, and personal goals — not to mention physical well-being. It is not enough for advocacy organizations to spend millions of dollars every year raising awareness, sharing strategies for coping with tics, giving educational support to families and school staff, and striving to reduce bullying. These are all noble efforts. But families and patients need to know everything they can possibly do to reduce symptoms, and this includes being aware of potential triggers.
Eventually, Ginger Wakem requested that I take the lead with her alternative therapy effort. I developed a newsletter with an advisory board comprised of leading specialists in integrative medicine, and in 1996 I founded the 501(c)3 nonprofit Association for Comprehensive NeuroTherapy (ACN). The website Latitudes.org followed. I wanted to spread the message that the treatment of tic disorders should include a comprehensive range of integrative approaches. Other neurological conditions, including ADHD, OCD, autism, behavior and learning problems, PANDAS/PANS and depression are also among the focus of our organization.
We are encouraged by the growth of our nonprofit association and the positive response we have received to our efforts. We are also pleased that our book, Natural Treatments for Tics & Tourette’s: A Patient and Family Guide, has often been the Amazon bestseller on the topic of Tourette syndrome over the past several years. It is the only comprehensive guide on how to treat tics, twitches, and related neurological conditions using a variety of natural and alternative or integrative therapies. More recently, ACN launched StopTicsToday.org to raise much needed funds for research.
Adapted and reprinted with permission of the author from Tourette Syndrome: Stop Your Tics By Learning What Triggers Them (2018, ACN, Grosse Ile, MI).
Sheila Rogers DeMare is a leader in the field of integrative therapies for neuropsychiatric disorders. Founder and director of the international non-profit organization Association for Comprehensive NeuroTherapy, and editor of Latitudes.org and StopTicsToday.org, she is the author of the bestseller Natural Treatments for Tics and Tourette’s: A Patient and Family Guide.