What Makes Me Tic?

Posted Wed 25th Oct 2017 at 13:29 by Eric Woollard

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Student Eric Woollard talks to us about his TS journey.

When you ask someone to tell you something interesting about them, you may find them talking to you about something they have done, or something they aim to do in the future. Rarely do they tell you something about them as a person, something that makes them different to the majority of the rest of us.

Every single person has different characteristics, such as height, gender and age. These characteristics help define who we are as people, and allow us to differentiate between individuals. Some characteristics however, are less common. We can also tell people apart from the things they say and do. Some people are good runners. Some people are great mathematicians. Others can be recognised simply because they are not what we would consider “normal”. We all have something about us that is uncommon, or even unique. Whatever the characteristics are that make you stand out, they are what make us tick.

What makes me different? What makes me tick? Well the characteristic that is considered most “abnormal” about me is not something I have done, or something I aim to do. Instead, it is something I do all the time. Thousands of times each day for the past twelve years. I don’t tick… I tic.

My mother first started noticing my tics when I was three years old. At the time, she did not realise what they were or what they would develop into, but she noticed them.

My first tic was a stretching of the head to the side and a shrug of the shoulder, which is a very common tic. My mother asked me what I was doing and I said that I had to do it because I was uncomfortable. She misinterpreted this as meaning that the labels on my clothing were irritating me and proceeded to cut all the labels out of my t-shirts and to sew my nametapes on the outside of my clothing. This did not help at all. This tic continued until I was about six years old.

When I was six, I developed two new tics. The first was a vocal tic. A loud, forceful grunt (loud enough to be mistaken for me clearing my throat). This was very irritating for both of my parents, but despite being told repeatedly to stop, I could not prevent it. The second tic was another motor tic. I began grinding my teeth suddenly and aggressively. I was grinding them so hard that my mother could hear me doing so in the back of the car and my jaw became painful. I can remember being on a boat in New Zealand and her deciding that we should have a code word that she would say when she noticed me grinding my teeth. This did not help, although the memory has stuck in my head.

Since then, my tics have waxed and waned, developing and changing all the time, always there but not necessarily what they were the day before. Over time I have experienced several tics in this order:
1. Neck stretching/shoulder shrug – 2004
1. Loud grunt/throat clearing - 2006
2. Teeth grinding - 2007
3. Nose twitch – 2010 (still present)
4. Whistle – 2011
5. Deep, quiet throat noise – 2015 (still present)
6. Multiple heavy blinking – 2015(still present)
7. High pitched squeak – 2016
8. Loud throat clearing - 2017

The urge to tic is incredibly strong. The sensation builds up in my head getting stronger and more painful until I finally release the pressure with a tic. Sometimes the tics do not feel right and I repeat them over and over again until the urge is satisfied. This can be incredibly annoying, as it is a lot harder to disguise four loud grunts than it is to pass one off as clearing my throat.

Some people when I tell them this just ask why don’t I just resist the urge to tic… I read a very good description of what it is like to suppress a tic. Try not blinking. Over time, your eyes will start to hurt and you will eventually give in and blink. That is a good way of getting an idea of what it is like to control tics; it is tiring and in the long run, impossible.

I have tried a few times to see how long I can go without ticcing. I focussed on one tic at a time, as it would be too difficult to suppress them all at once. The longest I managed to suppress a tic for was just over an hour, but in that time I could not do anything else. I was sat completely still, not talking or listening to anything. Sometimes I even noticed that I was holding my breath, which does actually make it easier to suppress the tics, but again, over a long period of time it is unsustainable.

In some cases people have noticed that their tics get worse in times of high stress. However, I have not seen this pattern in my own tics. When I am stressed my tics do not worsen noticeably, but when I am relaxed, they all come rushing out. Usually my tics are at their worst when I am in the bath or in bed trying to sleep. This can be incredibly frustrating as it rather hinders my ability to relax. This could potentially be due to me sub-consciously suppressing as many of my tics as possible during the day and then being forced to let them all out at once when I am alone in a calm, stress-free environment.

People often make comments to me about my Tourette’s. Usually the comments are merely due to interest in what and why I am doing what I am doing, but occasionally I get negative remarks too. Sometimes people make jokes about it, which I don’t mind really, as long as they aren’t too personal. However it is the remarks about my tics being annoying or disruptive that are really hurtful. I have had experiences in public places such as concerts, cinemas and classrooms where people have asked me to be quiet as my noises are distracting or irritating. This is what makes me feel abnormal. I have come to accept that my tics are part of me, but when other people tell me that they are finding them weird or frustrating I do feel hurt. Not only because it is insensitive, but because if they are finding sitting three metres away for an hour and a half annoying, perhaps they ought to think about what it is like having it inside your all the time.

After my official diagnosis a few years ago, the paediatrician referred me to the Child and Adolescent Mental Health Services (“CAMHS”) unit. I didn’t expect a lot of help from them, but even so, they surprised me. Shortly after my referral, I received a telephone call from an Occupational Therapist, telling me that my referral had been a computer error and that I should not have and therefore would not be offered an appointment. The way this was handled was not right. I knew that I was not the most serious case they would have, and therefore I did not expect much help, however cold calling a young teenager direct to tell them they were not going to receive help for their condition is not what should be done, especially as they were not aware whether or not I was having any other issues relating to my Tourette’s.

After the disappointment of being turned away by CAMHS, I went to see a cranial osteopath whom I had visited a few times before my diagnosis to see if he could work out what was wrong with me. On returning to him, I had several sessions, each about a month apart, in which he tried to see if he could feel anything out of alignment that may be resulting in my tics. We didn’t expect him to cure me, but we were hoping that perhaps he could find something that was noticeably an issue and potentially reduce my tics. Unfortunately he did not succeed in reducing my tics, but he did say that my head had previously felt incredibly tight and that he thought he had managed to relieve a lot of tension.

On my return from the 2017 school ski trip, I developed a new tic. This was interesting because my previous “up-tick” in ticcing came immediately after my return from the school water sports holiday. I cannot explain whether this is significant. My new tic was more disruptive than the others. I woke up one morning and without warning, I started a new tic in which I cleared my throat very loudly. Despite there being nothing in my throat to clear, I was ticcing like this very frequently; sometimes up to ten times a minute. In order to try to combat this new, more noticeable tic, I decided I would focus on trying to stop it. My dad suggested that I concentrated on my breathing patterns with no distractions and try to breathe particularly deeply when I felt the urge to tic. This was incredibly difficult at first, but over time it got easier, and eventually I could go for long periods of time – sometimes hours – without ticcing, provided I had no distractions and could concentrate on my breathing. I began to notice that the more I did this, the less frequently I was doing this particular tic when I wasn’t thinking about it. I had a similar tic back in 2006 that lasted for about three months, so I was delighted to wake up three weeks after the tic emerged, to find that it had completely disappeared over night.

I wrote this for my Independent Learning Project last year in year 11, and for my Extended Project Qualification this year I am hoping to write a more detailed essay on the role of the basal ganglia in Tourette’s syndrome.

More recently, my tics have been fairly manageable. They have not been too prominent, and I have coped well. However this week I developed a new tic. I started making a screeching sound in my throat. This new tic really upset me and I found it very hard to cope. It was making me more emotional and resulted in me being even more tired than usual. Fortunately, since the evening that I first noticed this new tic, it has not been frequent, with around five per day compared to initially around one a minute. My tics make concentration quite hard. I get distracted very easily and as a result my work is often not completed or rushed at the last minute. I am working very hard at the moment to catch up with my peers, as I have begun to fall behind, but I hope to find some time between working for writing some more in the future.

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