How deep pressure helped me control my Tourette Syndrome

Posted Tue 19th Jan 2021 at 14:43
by Ellen Adby

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Ellen Adby shares her experience of using a weighted blanket to help with tics.

I was diagnosed with Tourette Syndrome (TS) when I was 15, (about a month before I turned 16), although looking back on it, I had, in fact had tics for years that had been put down to habits. One such tic was a nose scrunch that I couldn’t count how many times I did a day, nor, how many times people either told me to stop it or laughed about it. That was when I was 8, and I still get that tic today but only occasionally or if I am thinking/talking about it.

The main signs of a tic disorder were noticed when I was about 14, I was jerking my neck back and forth and over the next year I gathered more and more motor tics of varying types. Nearly exactly a year later I noticed I was meowing; I remember going to my mum and telling her I was meowing and I didn’t know why or if it was me. Again, I slowly started to gather a growing collection of words and sounds I would tic, then I started shouting short phrases and sentences.

My TS got really quite complex, with biting tics, swearing, hitting, jumping, complex sentences, song lyrics and many other tics. It got to the point where I was prescribed Clonidine. Sure, it helped somewhat, but after taking it for a year (I was now 17), I decided the side effects weren’t worth it and came off it. The psychiatrist that was over seeing me was pretty convinced that I would need a different medicine and wanted to put me on an antipsychotic, I didn’t want to take it so I refused and just decided to see how things went.

For a while my tics were at a manageable level, but mid-way through my first year at university they peaked again (I was 19 now). This time I decided to try an alternative method.

I had heard that weighted blankets could have a calming effect and wondered if it would help me. So, we took the plunge and brought a lovely cosy blanket from Amazon. At worst it would be a good blanket for cold nights! But no, that was a turning point; within a short time of being under the blanket my tics had all but stopped. The downside was that it only seemed to work while I was under the blanket. I did doubt if the effect was real or in my head so I did a lot of research online and found out the effect is down to something known as deep pressure therapy.

Over the course of a few weeks the effect seemed to build up, and I was finding that even when not under my blanket, my tics were greatly reduced. One thing to note here, is that we were headed into summer and for some reason my tics always seem better in the summer and worse in the winter. The following October my TS started to worsen again, I decided not to wait until they were super bad as I had before and chose to do something sooner.

With that in mind, we rented a squease (yes that’s how you spell it) vest, a wearable form of deep pressure therapy, that uses pressure rather than weight. This again, only took a short time before I noticed a considerable difference and because it is adjustable, I can use varying degrees of pressure in relation to how bad my need to tic is. Deep pressure therapy has really helped me to gain a level of control of my TS and I am very grateful for it.

Over the years, deep pressure therapy isn’t the only thing that I have found works for me. For biting tics, I wear a chewigem bracelet on my wrist, as I used to bite my hand so hard it went numb. For punching tics, I found wearing some sparring mitts stopped me from bruising my knuckles, and acted as a little padding for anyone that happened to get hit! Tourettes is an ever-changing challenge, and from what I have learned is it is better to try preventative or protective techniques sooner rather than later.

I have too often waited until I couldn’t cope anymore before I tried a new technique to help myself. Recently, I have started a tracker in my bullet journal so that I can keep an eye on how bad my tics are each day.

Ellen attended the first Tourettes Action TEENfest event in 2018 (see picture on right).

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