Can You Help Judy Find Answers for Her Tics? Please Share Your Advice
We are updating this article from 2014 to give an opportunity for additional sharing of ideas. The letter from Judy was received from a young adult who was looking for solutions to her tics. Please see comments at the end of this article.
I was reading your article Finding Triggers for Tics and am looking for some advice.
I’ve had very bad tics since I was 9 years old. Now at 22 I have been practicing Habit Reversal Training for three years which allows me to control my tics for most of the time, especially in public.
But some weeks or days my tics will be great and some days they will be terrible and on those days I can’t control it with the training technique.
I’m fascinated by the idea of foods triggering tics. I think I may have a trigger with preservatives, which I realized after reading your article–I find that “pot noodle soups” here in the UK make me tic more.
Is there a way to get tested for other food allergies? I already don’t consume a lot of the items on the list you provided. For example, I cut out caffeine two years ago and switched to caffeine-free. I don’t eat any dairy food, just because I’m a picky eater (except for Cheddar cheese in the odd cheese toast). I don’t consume alcohol. I don’t eat chocolate–or at least very rarely because I find foods high in sugar make me sleepy. I don’t have sweets often, so I don’t consume much in the way of artificial flavourings. I have made my own xylitol sweets though, but that is not artificial and I only have one or two a day.
I do drink Caffeine-free Diet Coke, one can a day, but I have had good tic periods while doing this, so I don’t think that is a problem.
I don’t usually come in contact with cleaning chemicals, and on the rare occasion that I do I always wear gloves.
As for mold–I do have some mild mold spores behind my bed, but again, I have had very good tic periods and the mold has been there for the past four years even when we paint over it.
Is there any advice you can give me? Or what kind of allergy testing can I have done?
Note: This request is published anonymously and a stock image has been used.
Meditation. Try Doreen Virtue’s guided meditations on YouTube for free.
Also, eat clean, no coca cola, no chemicals. Exercise daily and sweat out toxins. Nourish your mind and your soul as well as your body. Tune in to Hay House radio. No, I am not affiliated with them but it will help you. Trust. Faith. Positive thoughts. Help others while you help yourself. You can beat this, I know you can! God bless you!!!!
for Judy,
look up http://fedup.com.au/factsheets/symptom-factsheets/tics-tic-disorder-tourette-symptoms
the RpaH diet (failsafe) has worked for us It is not an easy task to begin with but you will learn about your triggers hopefully. This is referred to in Sheilas book by another mummy who had 3 boys with tics. Its worth a try
Karen
Judy — it sounds like you are doing a lot of things right. Both Al and Karen gave some good ideas including the Failsafe diet. As far as allergy testing, please check out this article “Food Allergy Made Simple” by Dr. Albert Robbins http://latitudes.org/food-allergy-made-simple/ It includes some info on testing.
Artificial flavorings can be in any kind of food, not just sweets, so read labels — and avoid artificial colors as well as flavors. A note on the cleaning products. It’s good you wear gloves, but breathing in fumes/scents can be as bad or worse than touching them, so please keep that in mind.
We don’t know what type of mold it is but ideally your bedroom would be an “oasis,” so your body is free of allergens for an extended period. Would get a mold expert to look into it, especially since your head is near it all night.
Artificial sweeteners are not advised.
With tic symptoms, sometimes it is an issue of a combination of things, the “total load” of what is going on in your life. Be sure to avoid all scented products. You didn’t mention supplements. You could see a nutritionist for help there.
The trigger from the soup could be the preservatives, but it might also be related to MSG (a lot of instant soups like Ramen Noodles contain MSG). Not sure of the ingredients in Pot Noodle Soups.
You might want to try to keep track if there is a correlation with your tics being worse in the morning or in the evening. I noticed that my tics would get worse when I was in bed (particularly when I woke up). It turned out that an allergy to dust was the culprit. I now use an air purifier and an allergy cover for my mattress and pillow, which has helped a lot. I also wash my bedding in hot water and use All Clear Free detergent, which doesn’t contain any perfumes and has an ingredient that helps to kill dust mites.
Good luck!
Diet was a really big thing for our son and his tics, even as he reached college age. I agree with MC, keep track of when tics are the worst and what might be causing them. It might be something you never even thought about.
Have you explored PANS-Pandas? Childhood onset of TICs along with other things could point to this treatable but rare condition. It sometimes goes undiagnosed. latitudes is a great resource for these complex set of conditions. Good luck.
Find a doctor who know about PANDAS (Pediatric Autoinmmune Neurological Disorder Associated with Streptococcus).
It seems that 25% of tic disorders and OCD are a result of the immune system antibodies attacking the basil ganglia in the brain..
Treatmentsare usually antibiotics to get rid of the underlying infections,and/or IVIG (intravenous immunoglobulin).
Do a search on PANDAS or PANS.
The identification of this syndrome was in 1998 and is still condsidered controversial amongst doctors and psychiatrists.
Try it — you may be pleasantly surprised.
That’s good advice asfml and Joe–fortunately, more progress is being made on PANDAS each year. It’s definitely a factor in some kids’ tics.
This sounds weird but two dentists called Anthony Sims and Brendan Stack wrote a paper in 2009 in which they made the radical suggestion that TS was – and is – a treatable “structural-reflex disorder” which could be corrected by relieving the physical pressure on the nerves at the base of the brain.
Dr. Ticcy” (a pseudonym for the Tourette Syndrome Foundation of Canada’s National Office) explained their unique treatment well when “s/he” wrote.
“Drs. Sims and Stacks believe that when the cranial nerves that control the front of the face, the sides of the face, and lower digestive system get compressed together (squished), they “cross talk” – they transfer nerve impulses from one to another and in doing so, they bypass the higher control center of the brain. … These dentists say the Neurocranial Vertical Distractor, (NCVD) when inserted over the lower jaw, “distracts” the fibers entering the base of the brain preventing cross talk with neighboring nerves.”
Thank you, Stella. It’s fascinating how dental appliances help some, of course not all, people with tics. The topic is included on our site in several articles/forum threads. Here’s one. https://latitudes.org/dental-appliance-stopped-marks-severe-tics/
Could you please share the link from the Dr Ticcy comment? We’d be happy to link to it.
I am in my 70s and our son is in his 40s We have had Tourretes since our early childhoods. For both of us, the symptoms were considered to be moderate ….certainly not mild and not severe either with uncontrollable facial movements, arm movements, clearing throat repeatedly, very uncomfortable wearing certain clothes ..fabrics, tags. We wear loose clothing..
Tourettes bothered us both very much for many years.. I cried frequently because my mouth was so sore from the uncontrollable movements. Finally, seventeen years ago, our neurologist tried us in an ARICEPT trial – this medication has been most helpful to both of us!! We still clear our throats but no longer have the difficult uncontrollable body movements! We are both still taking Aricept and are so grateful that our neurologist included us in the trial 17 years ago and has continued us with it. Taking Aricept everyday has been such a blessing to our lives.
We hope this information can help others suffering with Tourettes.
Marie, I’m so glad to read that Aricept helped you and your son so much after you both experienced significant tics. Thank you for sharing your positive experience with it. Here’s a link on the drug for our readers:
https://www.rxlist.com/aricept-drug.htm
My son was once diagnosed with Tourette’s but he would have tics and make noises some days but not others. We figured out it was a corn sensitivity. If he ate a little bit of corn products nothing but at some point his system couldn’t handle the levels in his body and the tics would start and it didn’t take much high fructose corn syrup (soft drinks) to get it going. He switched to diet drinks and then had a reaction- hives. Turns out aspartame is a corn derivative. He took a skin allergy test and showed a sensitivity to just about everything. We found out later the test used a base product that had a corn derivative. We have since had him tested and found he has a mutated gene which causes him to metabolize certain things very slowly. Not sure yet if it’s related. There’s a book by Doris Rapp MD that was helpful. “Is this your child?” Hope this helps you.
Raybo, Congratulations — It’s not easy to track something down like a corn sensitivity when corn is in so many products. I’d never heard that about a base product for skin testing containing corn. That’s crazy. I hope you can let us know what you learn about the metabolism issue.
Thank you for mentioning Doris Rapp’s book, Is This Your Child? It is such a classic and many people haven’t heard of it, or consider it out of date. But it is a goldmine of information on unrecognized allergies and includes a section on tics/Tourette syndrome. She was a real trailblazer. It’s on Amazon and well worth the cost:
https://www.amazon.com/This-Your-Child-Doris-Rapp/dp/0688119077?asin=0688119077&revisionId=&format=4&depth=1
I see you were asking about foods but added some other issues too. What about the mold behind the bed!? If I read it right, it shows up even when you paint over it. You could have a big problem there and the dry wall or whatever it is needs to be removed and replaced. Who knows what lurks back there! Mold can be more active at different times depending on heat and humidity. But it’s never a good thing and I’ve read about it triggering tics and other health issues.
The fact that there is not always an increas in tics doesn’t mean its not part of the problem. It could be a lot of things add up. Like a little of one thing isn’t causing a tic but that on top of let’s say MSG, stress, and some other issue could make the difference.
After reading the amazing book by Sheila Rogers, Natural Treatments for Tics and Tourette’s, I was able to make some changes in my son’s diet and make his tics under control.
So I have these tips for Judy:
1. Cheddar cheese makes his tics worse and has yellowish color. Some may have artificial color and some have annatto which is natural but can cause allergic reaction. So I just buy white cheese such as Feta and Mozzarella.
2.Any kind of coke is bad for tics even diet cokes. The ingredients of coke are a secret, so better not to buy them too.
3. Any food products that come in jar, box and could make tics worse because they don’t have to list all ingredients and additives. You can’t rely just on the list of ingredients provided by the company. Rely on your observations. Even caffeine-free coffee may not be good as well.
Good luck!
After suffering for years my son found Habit Reversal Training to be very heplful. Also homeopathic Agaricus, Stramonium or a constitutional remedy selected for you by a homeopathic practitioner. Both have helped my son and offered tremendous relief.