Can I Tell You About My Twitchy Face?

So after many years and several attempts I finally kinda sorta have a diagnosis for why my face tics and twitches so much. Of course you reading this won’t know how much it happens as I am currently hiding my ticcy twitchy face behind this wall of text. I have for a while been thinking how cool it would be to start a vlog for my book ramblings, since I quite like the immediacy of it. Blogs are very constructed and vlogs seem more spontaneous, even when a lot of work has gone into preparing them. But I just don’t feel very comfortable in front of a video camera, and these tics and twitches are the reason why.

For years I have had these involuntary movements in my face. Since I was a kid, in fact. They come and go, get worse, get better, change from one form of tic to another. On the whole it is always present in some form, but gets significantly pronounced when I am tired, or when I am stressed. Over the last two years it has been getting worse, but I decided not to see a doctor as the last time I saw a doctor about it (roughly 15 years ago, give or take) the conversation went like this.

Me: I have these facial twitches.

Doctor: Yes, I can see them.

Me: So what are they?

Doctor: I don’t know.

Me: Can we do anything about them?

Doctor: Have you tried putting little pieces of paper on your face?

Pieces of paper on my face. I hope it goes without saying that putting small pieces of paper on my face did not solve the problem, though I should add that pressing my fingers against the muscles in my face does actually help a little. I discovered this when I was about thirteen, but, it should be added, this only helps while I am pressing my fingers against my face. When I take my fingers away again, the problem comes back.

Years later, on my wife’s insistence, I decided to try again and see if 15 years of medical science had evolved the treatment on from small pieces of paper, and it turns out it has. My new GP told me that botox injections can help, so she arranged for me to see neurologist. Aside from the disappoint of having to go back to see a neurologist after a five year period of seeing neurologists I was excited. This sounded plausible and the idea of a face that sits still, which for a very long time has seemed unattainable, was perhaps in my reach.

I think that the idea of a face that sits still must seem like an odd dream. I’d like a face that is as controlled as my hands. I have been playing the guitar for about twenty years and my hands seem so steady and controlled, but my face is like this jittery fool that follows my hands around. A few weeks ago I was recording a song onto my ipad and half way through you can actually hear a weird squelchy sound where my mouth suddenly ticced. It kinda spoils the mood of the piece.

The funny thing about my twitchy face is that no one seems to have noticed it but me. At least that’s what they say. If I ever try to apologise for it, or point it out so that it won’t be the weird spasmodic elephant in the room, people always say they haven’t noticed it. This is essentially kind of people but they are either a, not very observant, b, lying or c, falling for my now masterful obfuscation techniques. I have become quite skilled at holding the twitches in, and then letting them out at convenient moments. If we are having a conversation and you turn away to look at a clock or something you can be assured I am releasing a torrent of built up twitches in the moments that you are not looking. I’d say I’m like a twitchy ninja, except for the fact that I know I’m not that good at it, and everyone is actually just lying with every ounce of kindness that they have.

So when I got to the neurologist he told me that yes indeed botox injections can help with this sort of thing, but that sadly my twitches are too extensive to be suitable for it. I would, in essence, need more botox than a human face ought to have stuffed into it. I was disappointed, but also glad that he had been so straight with me. While we talked though he started to ask me questions about vocal tics and OCD. Things that I knew from all the reading I had done were symptoms of tourettes. But I don’t have any vocal tics, and any aspect of myself that might be OCD related, is not really all that OCD at all. I check things very carefully because working a laboratory for a decade has instilled that into me, and I know I am a very forgetful person, so when I check if the back door is locked three times, it’s not obsessive, it’s just me accounting for that fact that I am me.

I asked him what it was then, and he said motor tourettes. Which is not, in itself, a diagnosable condition but at least I now feel like I can put a name to it. I feel like it makes slightly more sense. Even though I have no idea why my face does these things or why it started, it is at least something. And that’s something.

I know that going on about medical conditions is a bit of a social faux pas, but the truth is, this doesn’t feel like a condition. It just feels like a part of me that is ever-present but that I never get to talk about or draw attention to. And why not? It’s not a big deal, but it is a part of me.

3 thoughts on “Can I Tell You About My Twitchy Face?

  1. I have dealt with the same thing since I was very young. I hate the stereotype that people think of when I say I have a minor case of Tourette’s. My symptoms progressed at the end of middle school and are still progressing today (I’m 20). I understand what it’s like to want a “still face” and it is very exhausting thinking about your tics all day and constantly worrying about people noticing. I am now on medication for it and it suppresses my tics tremendously, although the tics can worsen during very stressful or exciting situations. Thankfully, facial tics aren’t that noticeable to others unless you are around them often. At one point in my life my family could even be in the same room as me because my tic at the time was a cough that sounded like I was just clearing my throat. It was constant…like 30-40 coughs per minute. It would seriously wear me out and was embarrassing. For those who have serious cases of Tourette’s, I can’t even imagine what it’s like and my heart aches for them. Fortunately, science and technology have improved tremendously throughout the past decades and doctors have different types of treatment for Tourette’s. I wish you all the best because I know the struggle and I understand the frustration. I currently have tics in my neck where I flex it and I have one where my pucker up my lips and them side to side. Sometimes I just put my hands on my lips just to pretend like I’m thinking or making a decision haha. Also, there are many YouTube videos of meditation techniques for those with tics. It helps during the day. Thanks for the post!

    1. Hi, thanks for taking the time to respond. I put my hand over my mouth like I am thinking a lot to hide one of my tics as well. 🙂

      My tics also started when I was quite young, I guess about 11 or so, but it’s hard to put an exact age on it. I think I wrote this post because I don’t want this to be something that I can’t talk about, but people generally are quite uncomfortable talking about it. I understand why. If I had met you in person I don’t know how I would have broached the subject either. Once I had gotten a doctor to actually put a name to the condition I thought it would be a useful thing to have. So that I can say ‘don’t mind me, it’s just a mild case of motor Tourettes’ rather than have people trying really hard to pretend like they haven’t noticed and feeling uncomfortable. It’s almost like I have made my peace with my face (even if I wish it would calm down because, as you say, it can be exhausting) and I just want other people to be able to be cool with it as well.

      Thanks again for reading and taking the time to write. 🙂

  2. Toby 🙂 I remember this from our days in our shared flat and thought it was adorable. It’s very much part of you and your quirkiness that I like so much. Glad you didn’t get Botox as that means you would have zero facial expressions… like all the TOWIE people. Stay awesome!

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: