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Adult Onset Tourette Syndrome: How it started

The following post is from Alec Stott, author of the Adult Onset Tourette Syndrome blog.

I am a male, 21 years old, and this year, in 2013, I have developed what is in the process of being diagnosed at Tourette Syndrome (TS). I say in the process because the last medical professional I spoke to has explained to me that the condition cannot be diagnosed any earlier than 1 year after the initial onset, which for me will be early in February 2014.

However, what he did tell me after a 20-minute consultation is that he can see no other alternative diagnosis for the time being. I am awaiting an MRI scan, the results of which will be posted in a later entry, and for the time being that is the only name I can put to the condition in order to explain it to those closest to me.

So here is my story, in as many words as I can put it, to help anybody else in the world that is experiencing the same thing as I have been. And to those of you who are, come forward! Contact me, get in touch and tell me what’s going on. It’s all very new to me and I would love to be able to help and learn as much as I can. So, here’s the story…

In February 2013, while in my third and final year of university, with a fairly high stress load on my shoulders and plenty of family orientated issues in my life, I developed a semi-voluntary twitch in my left shoulder. I use the term semi-voluntary (admittedly stolen from a medical website explaining TS) because that is the only true way to describe it.

Imagine if you will, someone with arachnophobia knowingly having a spider placed on his or her hand. They would feel as though there was no alternative option but to throw it off in any way possible through the fear they felt. The feeling of a tic for me is almost identical to this, if the fear was to be replaced by a pain, discomfort or anxiety. So the choice to execute the tic, although still a choice, feels like the only option at the time.

With this new strange shoulder movement (which at the time I described as just a twitch) worsening over time, I contacted my GP as any person would, and had an appointment booked for 2 weeks later. Over those two weeks the ‘twitch’ worsened to a point where it was almost constant, day and night (according to my partner of 5 and a half years).

The appointment led to a preliminary diagnosis of dystonia, or possibly TTS (Transient Tic Disorder). The latter of these is, as far as I can gather from the Internet and books, a diagnosis for the first year of the symptoms, after which the condition would officially be diagnosed as TS.

Over the two weeks that followed the appointment, the real motor tics started to emerge. Head movements and shoulder movements that were identical each time, and resulted in a feeling of satisfaction once executed. There was also exhalation through the nose and grunting, tics that were more frequent and more elaborate than that which could be described as a ‘Twitch’.

With this I went back to see my GP again, who after a 10-minute consultation was the first person to use the term Tourette syndrome, something that had not really crossed my mind at all. I was always under the impression that TS was a condition that caused uncontrollable swearing and only from a young age, but evidently I was entirely wrong about that.

This is a misconception I feel society is plagued with, especially the idea that the condition causes swearing every time. Only 1 in 10 people with TS actually do curse or insult uncontrollably, and the documentations seen on television are usually the far more extreme of these.

I was booked to see a neurological consultant on June 17, which was quite some time after the initial appointments. This is something you should definitely expect to happen, the NHS offers a fantastic service, but they are constantly in high demand, especially in Neurology.

It was at this consultation that I saw the consultant who offered the preliminary diagnosis of Tourette Syndrome. In the weeks before the appointment, my tics developed into far more elaborate sequences of movements, the use of actual words and occasional swearing, and most annoyingly hitting myself.

I quite regularly now punch myself in the ribs or slap myself on the chest or the back of my head, shout ‘ha’ and ‘oi’ at unsuspecting strangers, clap and click with my mouth. The condition has seemed to settle into a constant state now, with no obvious new tics emerging, and with this I have learned fairly quickly to deal with it and accept it as it is.

In myself I feel very well, I am more positive most of the time, I feel less self aware and anxious, and luckily I have a limited control of the condition. I can hold back some tics for a fair length of time, although usually they will emerge at some stage in a worse form than usual.

For example, I went to a funeral a few months back and had to hold my tics for approximately 20 minutes, after which I had to unleash privately in a bathroom. But most importantly, we live in a society with people that are far more educated and accepting of conditions such as these.

I have left university, gotten a job in a holiday park working front of house behind a bar full time, and I work with a close-knit group of friends who have never questioned me at all. I was pleasantly surprised at how little the condition has affected my life.

As an acoustic singer/songwriter, I find the condition lies dormant when I am playing guitar or singing, so it has not affected me in that respect. The same happens when I play piano, drums, or even work on any music related project in which I am mixing/mastering music or recording music, etc.

It seems that ,usic (luckily one of the things I love most) is the one thing that the condition has not affected at all, and it remains to be my only respite. My partner has stuck with me, and actually seems to rather like my new extrovert side, often finding it hilarious when I say or do something new and bizarre.

We have even nicknamed the condition as Liam, my alter ego, because usually I come across as sarcastic, rude and obnoxious, in the same way that every ‘Liam’ myself and my best friend have ever met was (not to say that every Liam is the same, this is just a reflection of our personal experiences which coincidentally have been very similar).

I still don’t have many tips or tricks with the condition to offer, and, if anybody does for me I would be more than grateful. I find the condition has a tendency to flare up when I am nervous, irritated or angry, but most of the time it stays steady, unimposing and generally fully accepted by the general population.

Until next time, be free to get in touch. And in the good-humored manner of the Tourette Society, I’ll leave you with a saying I have grown enormously fond of in the past 6 months …

Life’s a twitch – Embrace it.

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3 Comments

  1. Alec, with yours coming on so much later in life than is typically, and progressing as suddenly as it did, I’m wondering if it had anything to do with a chemical imbalance? I have heard of others trying magnesium glycinate and having some success. In fact Malcolm who has posted on this site has recommended it, maybe you could contact him? Here’s the contact info he left: malcolm_kermit@hotmail.com I have a different neurological issue (seizures, also adult onset) and I’ve seen a big improvement since adding dietary supplements. Good luck!

  2. Hi, I’ve just spent two days in hospital having MRI, CT scan, blood tests for a similar thing. The neurologists found nothing and have labelled it a “physical manifestation of a psychological disorder”, suggesting I see a psychologist. Not much help really.

  3. I also developed this about three years ago and have decided to look it up tonight. Interesting read. Love the Liam thing 😉

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