I have both motor and vocal tics.
These have changed over time, as has the severity.
Here I will provide an in depth look at my tics and why I have the ones I do.
- Definition of tics
- How tics feel when they occur
- Examples of motor and vocal tics
- How my tics have evolved over time
- How tics can be simple or complex
- Tourettic OCD and Just Right OCD causing tics
- Coprolalia (swearing tics)
- Tics severity and how this can change over time
Trigger warning for anyone with TS! I understand that reading about tics can create new ones.
What are Tics?
Firstly, WebMD provides a definition of tics:
There are two types of tics — motor tics and vocal tics. These short-lasting sudden movements (motor tics) or uttered sounds (vocal tics) occur suddenly during what is otherwise normal behavior. Tics are often repetitive, with numerous successive occurrences of the same action. For instance, someone with a tic might blink their eyes multiple times or twitch their nose repeatedly.WebMD: Tic Disorders and Twitches
Motor Tics involve my physical movement. These are the ones you see more than hear.
Below are the most prominent ones I have had over time. Some disappeared in childhood whereas some stayed until the present day.
Tics can evolve and adapt to situations
Sometimes tics emerge only in certain situations. For example if I am on a balcony and know there is a big drop, I have an urge to drop whatever I am holding.
In this case my coffee. When I am not up a height this isn’t a tic. But because I know it would be bad to drop something from up here, that intrusive thought manifests into a tic.
I could probably satisfy this tic by just giving my hand a slight wiggle. To acknowledge the tic and give it a little ‘scratch‘ if that makes sense. But I don’t even want to risk that so I step back.
Many tics seem to thrive on what we don’t want to do. This can make the urge very uncomfortable and sometimes scary.
Tics can be simple or complex
If I was to throw my coffee across the train station, that would be a complex tic.
Complex tics are the ones that require more muscles to carry out.
Blinking is more of a simple tic as it requires less effort and less muscles.
This snippet from a psychiatrist’s letter included my more complex tics in childhood. These were described as having an ‘obsessional quality’:
In addition to the muscular tics which effect his eyes, his face, his head and his hands there are also some quite complex movements which as you say seem to have an obsessional quality, although Samuel maintains that he has very little control over them.
Some of these “tics” are quite risky, For example, he feels obliged to put his fingers in the crack of any door when it is closing and removing them at the last moment. Similarly, he feels an obligation to scrape the back of his hand along the floor, with the result that it has become quite sore and scarred. Another complex movement is that whenever he gets into the car he has to kiss the back of the seat on which he is sitting.
Samuel is quite unable to give any explanation as to why he carries out these movements which are variable in their intensity.A letter from a child psychiatrist to the paediatric neurologist. Dated 6th July, 1999
The more complex tics faded over time, these were by far the most embarrassing and humiliating for me. In my teens and early twenties only short, simple tics remained a problem. The head nodding and shoulder shrugging stayed and are ones I still do every single day.
Tourettic OCD may best describe the tics with ‘obsessional qualities’. Tourettic OCD is a combination of both Tourettes and OCD, I have a post about that here.
Vocal tics involve sounds, words and phrases.
Although less physically demanding than motor tics, vocal tics can put strain on the vocal chords, jaw, mouth and throat. Any muscle that is being used to deliver the tic can feel sore and/or ache.
Vocal tics can also be defined as ‘simple’ or ‘complex’.
I was always self conscious about the words I shouted as a kid, as these stood out so much. I ended up adopting the word ‘cool’ as a way to disguise my tics with a seemingly ‘hip’ word that I could slip into a sentence. Anytime I had the urge to shout something I would say the word ‘cool!’ instead.
This of course still stood out like a sore thumb at times when the word ‘cool’ wasn’t very appropriate for the conversation.
I am actually surprised I was able to choose a new word, and for that word to become the default tic. This is similar to what is taught in habit reversal therapies.
Some patients have found that doing a new motor or vocal action whenever the urge to tic arises can eventually make the previous tic fade. This has helped some escape certain tics that can be stressful, painful or risk injury.
The shouting of words also faded after childhood, and only grunts and hums remain. I still do these.
Edit* I have developed another vocal tic during lockdown, although this seems to be the Tourettic OCD mentioned above.
When I have certain intrusive thoughts I have to reverse that thought with a good one, and sometimes I have to say things out loud to register it as a ‘cancelling out’ of the bad thought.
But as this is closely tied with OCD I will talk about it here.
I don’t swear (Coprolalia)
The idea that everyone with Tourette’s swears is a myth. I remember being in school and hearing students joke about Tourette’s for the first time, there was an animated video going viral about a kid that kept swearing to his dad mid-sentence. The kid couldn’t help it, the dad got angry and of course everyone that watched the video found it hilarious.
I had to laugh whenever someone showed me it, although deep down I felt very frustrated. All I wanted to do was tell everyone that TS was so much more than that.
I kept the condition suppressed in school, so whenever someone talked about TS they were oblivious that I had it. If I let a tic out and explained what it was, the response would often be ‘Wait that’s Tourette’s?! So why don’t you swear?!’
This was my teens. Strangely I read in one of my doctors letters that I did utter profanities at one point, although I cannot recall this. I was nine at the time the letter was written so a long way back, and it couldn’t have lasted long.
What it feels like when I have an urge to tic
The best way I can describe the sensation is like an itch. This ‘itch’ is more mental than physical but acts in the same way. The itch comes, it stays until you either wait for it to leave or scratch it.
Let’s say my tic is to touch this trolley whilst I am in Kings Cross Station.
The itch comes along in the form of a very strong urge. The urge is to touch the handles, or the bag, and is so strong it is hard to think of anything else until I finally touch it.
My brain is basically saying ‘TOUCH THE TROLLEY! TOUCH THE TROLLEY!‘ and this mental itch only goes away once it is finally scratched. The ‘scratch’ of course being to carry out the action.
Some describe this sensation a little differently. I have heard people say it is like a hiccup, others describe a buildup of pressure inside the body. One thing they have in common is a very strong involuntary urge to do something. The only voluntary action is carrying out the tic to help the original urge disappear.
This may depend on the tic too, and what body part is affected.
If you have heard Tourette’s consisting of ‘involuntary tics’, this usually refers to the initial urge and not the act of carrying out the tic. The involuntary urge to touch the trolley, followed by the voluntary action of touching it to complete the cycle.
I say ‘usually’ because some people with TS may not feel that original urge at all. These tics may indeed feel like they just happen without a choice.
Tics can worsen at certain times
Below is from a letter when I was being diagnosed:
Samuel has developed a variety of tics which include repeated blinking of the eyes, head jerks, facial twitches, jerks of his arms and legs which are worse when he is tired in the evenings.A letter sent from a paediatric neurologist to a paediatrician, dated 16th April 1999
I still find that tics are a problem when I am trying to sleep. They can be fine all day and as soon as my head hits the pillow, my head-nodding increases ten fold. I don’t know why exactly, but moving my head on the pillow to get comfortable seems to be a trigger.
Tics can affect quality of life
This does have to be answered by each individual, as it varies so much from person to person. Growing up with it means it is all I have ever known, personally it would be much more stressful if I suddenly woke up with it in adulthood. It can be very stressful and get on top of me like life can do for all of us at times, so it is important to do what we can to make our lives easier in the ways we can control.
The good thing about TS is that it doesn’t reduce life expectancy, nor does it impair decision making. We are free to do the things we want to do in life and most people live very fulfilled lives despite it.
It is all about managing the condition as best you can, and using it to your advantage. Whether that is blogging about it to help others, or finding your creative side like so many successful people with TS have done. It doesn’t have to be a hindrance, and finding something that we enjoy doing can be a distraction away from tics.
In fact, it could even be the catalyst to success that you may not have achieved otherwise.