Tourette’s in Adults

I understand personally and have read that Tourette’s can be affected by hormones. It has even been said Tourette symptoms worsen or even present for the first time when women hit menopause and after the birth of a child. The neuroscientist (Dr. Giles De La Tourette), who discovered Tourette’s in his 1885 Study on a 85 year old French noble woman, says that adults do have Tourette’s even till late in their lives. 

I have a mild form of Tourette’s that went undiagnosed for most of my life. I have recently experienced an increase in the symptoms worsening with age and hormonal changes – having children and now premenopausal. As a child I had physical tics and mumbled.

Being a female makes you behave differently in public – always getting redirected and having no excuses for outbursts. It’s not lady like. I had to learn at a young age that certain things were not ok in public, such as being so fidgety. I believe that learning to control and understand Tourette’s and its social aspect that makes it seem to disappear as we get older. We know what is acceptable and what won’t be accepted. As we get older we can pick and choose what social situations we attend, who we talk to, or whether we socialize at all. The people who know us best accept us for who we are and we are comfortable in our surroundings for the most part.

As an adult, I can feel the impulse coming up almost like a pressure building, so I know I can remove myself from most situations or try to make it less noticeable with the art of distraction. No one minds if you burst into song suddenly and spin, twirl etc. Sometimes that is my cue to exit. It’s not until we independently enter the public world of events, school, or work that challenges present themselves. There aren’t many supports for this, and social knowledge on Tourette’s is not strong in Canada. There is not a lot of information on the internet elsewhere either, but I have no personal experience with social perspectives, treatments and research in other countries.

It’s not that the symptoms are necessarily gone, it’s just that they are less seen by the public. Sometimes, it’s not that a person is losing the condition as they become adults, but that they have had accepted this about themselves and learned to cope in public as they became more in control of their environment.

Although you can’t physically always see Tourette’s (and its most definitely not well understood by the public) it is very much like a physical disability in the way a person would perfect the art of hiding the condition to the best of their abilities in public, yet you will always feel different from everyone else. 

Along with Tourette’s, I also have HF-autism and dyslexia – so I was called an odd child. I was never actually diagnosed with Tourette’s. When I was little, I was a fidgety, mumbly kid; the youngest of 5, not noticed much, and I didn’t talk until I was almost 4 years old. I noticed Tourette’s profound presence after I had my daughters. My solution was to simply not go out much. I went to work, took stocking jobs and cleaning jobs that allowed me to be independent and I only socialised with my family.

Closer to perimenopause the outbursts became louder and less and less controllable. As I started to read more about Tourette’s I realized how long I have suffered with this condition. I just thought I had poor social skills as a child, plus I am a loner so I can see how it didn’t get noticed. Had I been more of a social person, someone would have noticed sooner.

It’s unfortunately not great news to find out you have Tourette’s at such an old age. Now, I am left with the stigma of dealing with something that says I shouldn’t really still have symptoms!

Here are some brief thoughts on more topics related to Tourette’s

·       How stress affects TS and what to do about it:

Stress is a trigger for many conditions. Its neurological release of chemicals sets off the need for heightened, motion/action and accelerates symptoms of Tourette’s.

Yoga and relaxation techniques can help to ward off such stress. Additionally, knowing what stress you can handle and walking away when its too much can help. Plus, having a plan of action when you feel you need support. Active sports have also been known to help to distract you from your Tourette’s.

My favourite acceptance statement is… if a person can talk on their phone in public so loud we are all part of the conversation, then a sudden out-burst of TS should be seen as the same, it may not be completely acceptable, but its happening…😉

·       TMJ and Tourette’s – A symptom or a result of TS? How to help manage both: 

TMJ is the temporomandibular (tem-puh-roe-man-DIB-u-lur) joint that connects your jaw to your skull.

This topic is not talked about enough as it is seen as an affect of TS and not a symptom. I have to wonder if it is part of Tourette’s for everyone with the condition? For there to be constant tension in the jaw and wearing of the joint area TMJ may be more of an issue than mentioned.

I have read of the Gleb Appliance (a dental piece that helps with TMJ) being used to help relieve some of the symptoms of tics and TS. Results differ for each person that mentioned trying it, it puts pressure on the back of the lower jaw, right by the hinge of the jaw. It also seemed the Gleb Appliance was mostly used in the US or UK, so I am not sure of its international use or availability.

Relaxation techniques could also be helpful. Have any of you tried acupuncture or other massage/alternative medicines? Please comment below.

·       The Conversion Table: 

This is something I would like to try – The conversion table flips you upside down so you can get more blood and stimulation the upper body. It seems it would have a lot of benefits to your health, and if it helped with TS that would be even better! The idea of having a release of stress to the shoulders, neck and jaw would seem to have benefits for tics, and the blood flow and brain development may have additional benefits as well. I tried to see if there had been any results reported on the use of the conversion table or other such equipment, but there has been nothing shared publicly about it.

·       Hormones and Tourette’s Syndrome: 

There are a few articles on the late onset of adult Tourette’s and the condition’s symptoms getting worse after a hormone change.

Studies have shown Tourette’s Symptoms can get worse after having children and the onset of menopause. It would be interesting to see if you could control TS with hormone replacement therapy – perhaps using teas, herbs and other natural hormone inducers.

This being a less publicly discussed topic, I hope to explore more of it in the future. I’d like to find out if there are more adults feeling they lack the supports and resources regarding Tourette’s. I’d like us all to share information on what’s new in neuroscience and even technology. 

I am happy to have the opportunity to write for Planet Neurodivergent and shed some light on the topic of Tourette’s. It is a very underdeveloped topic, and there is very little communication, resources, support, and information. 

Jannetje has OCD, autism, dyslexia, and Tourette Syndrome. Having overcome failing school twice, she went on to have a successful career in adulthood and wants to show the neurodivergent community that they too can succeed in life.

Here are some of additional research sites and information on Tourette’s used in this article. There’s also resources and support for anyone who needs it:

https://tourette.ca/support/all-programs-services/

https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Tourette-Syndrome-Fact-Sheet

https://www.mayoclinic.org/diseases-conditions/tourette-syndrome/