This is something that I’ve been aware of for years but I’ve always been really embarrassed about, but a quick Google search on the matter tells me that this is experienced by a large percentage of traumatic brain injury patients so I thought I’d mentioned it and hoping that I’m not the only one.
So do you know what a tic is? I bet you’ve heard of Tourette’s syndrome, haven’t you? Over the past few years there have been a few programs on TV about it, you know when people swear, often loudly at very inappropriate times and it can be quite funny, well that swearing is a tic.
Tourette’s syndrome is a condition of the nervous system that causes people to have tics which are sudden twitches, movements, or sounds that people do repeatedly.
Sometimes, I saw people with Tourette’s syndrome on the tv swearing and thought ‘I understand that!’ and I wondered if I had something similar, I never did the swearing thing, but I felt I could relate. I imagined it as having an itch and needing to scratch it, only rather than an itch it’s a strong impulse to do something and doing it is like scratching it. Just like an itch though once you scratch it, it only satisfies you for a second causing a need to do it again very shortly afterwards. Now, to be clear, I’m not saying I have Tourette’s syndrome, but just that there was behaviour I recognised in myself.
The first tic I had was my cough. As long as I have had my brain injury, I have always had a persistent cough and the feeling of needing to clear my throat. It was first noticed in 2007 when I was in hospital; it was so prominent that we mentioned it to the consultant who arranged for me to see an Ear Nose and Throat specialist (ENT).
When the specialist found nothing and the problem continued, as a family, we found a need for an explanation, so we came up with the following. In 2007 when I was in a coma, I had tubes up my nose and down my throat for the purpose of feeding me and keeping me breathing. One day whilst still unconscious I decided to violently pull them all out almost choking myself in the process. When I tried to do it again a week later the staff wrapped bandages around my hands like two boxing gloves so I couldn’t grip the tubes (proper difficult patient I was!).
Anyway, it was always assumed that when those tubes were pulled out of my throat it caused some little injury to my throat which left some scar tissue that was tickling and caused me to cough. The ENT specialist put a camera up my nose and down my throat but rather than provide us with an explanation he found nothing. When I was discharged, and the coughing continued, it was accepted and became just something I did. This went on for a number of years and like many things I was completely oblivious to it until I realized after hearing an audio recording which was made when I was in the room and I heard my cough.
Why did I do it? Because I couldn’t help it, that’s why, and I certainly did not do it consciously. After a bit of Googling, I found out about a guy called Jerry Bubrick, who is an internationally recognised expert in the treatment of Obsessive-Compulsive Disorder (OCD). Bubrick says a tic or twitch becomes part of OCD when a person can identify the feeling in their body before the tic or twitch comes and if doing the twitch makes them feel better (sure I just said that Bubrick!)
This became something I was very conscious of, embarrassed about and tried to control for years using willpower, but coupled with my poor concentration I wasn’t very good at controlling it.
I thought I had a handle on it until a conversation with a friend of mine concerning a girl that I was considering starting a relationship with. My concern was that the girl in question had a bit of a high-pitched laugh. To which my friend replied, “Brooke you are so shallow! Imagine what you’d think if she said she didn’t want anything to do with you because of your twitch!”
“Twitch! what twitch”
“Oh, come on Brooke, you must know that you’ve got a twitch!”
The cough had pretty much stopped but had now manifested itself in me blinking (or as was so sensitively put, my twitch).
So that day was a bit of an eye-opener! I actually had no idea about this twitch, but I guess I knew that I blinked a lot. In fact, I probably always knew but I was naïve enough to think it wasn’t that bad and people didn’t notice it (people definitely noticed!). It continues to be an issue to this day but since it’s been pointed out, I am very conscious of it, and I am able to make a mostly successful conscious effort to control it.
I found it comforting to read that ‘Tics are one of several post-traumatic movement disorders that can occur after severe head trauma. According to most estimates, these disorders can affect anywhere between 13% to 66% of TBI patients.
The exact cause of tics after a brain injury is unknown, but there are several possible factors. These include:
- Genetic predisposition (it runs in your family)
- Basal ganglia damage (damage to the area of the brain responsible for movement. When someone sustains basal ganglia brain damage, they may experience difficulties with balance, posture, or other movements.)
- Poor communication between different brain structures
- Excess dopamine
Most tics develop within the first few weeks after a head injury, but some have been known to appear as late as one-year post-injury.’
I disagree with the last statement about when tics develop as I have had them develop ten years post-TBI. I’m not a neurologist though, that is just my experience.
I’d say that I’m 95% there with it but it does remain something I am conscious of and struggle to control when I’m tired, so I guess that’s where fatigue management comes in; doing my best to avoid getting in a situation when I’m tired. I find that I can control most impulses but when fatigue gets a grip then, as with many things, control just goes out of the window
The way I started to improve things was by firstly becoming aware of my tics. If you don’t know what’s going on, then you don’t know how to control it. I found that often, people were always too polite to tell me things for fear of hurting my feelings. You need to find a friend or family member and explain to them how beneficial it is to your recovery to have your tics pointed out. Then you have to be prepared to hear them, to cringe and squirm! If you want to remain oblivious to these things, then that’s ok, but I personally found it a huge benefit.
Video yourself reading something into the camera for a few minutes, long enough so that your tics will reveal themselves. I found this out when I did an interview over Zoom that was then published online! I found the results horrifying, the way I looked, the way I spoke out of one side of my mouth and my excessive blinking were almost too much to bear but I’m so glad that I know as I can now look at ways of controlling them.
Brooke Trotter
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