A few days ago I heard about an article in the Journal of Neurology, Neurosurgery and Psychiatry and it was something I was very pleased to read.
The piece was reporting on a study carried out at St George’s Hospital in London into the ‘distinct bouts of severe, continuous, non–suppressible and disabling tics’ experienced by some people with Tourettes. AKA, ‘ticcing fits’.
These have been a daily part of my life for over two years and they’d been happening on and off for several years before that.
The team at the specialist Tourettes Clinic at St George’s reviewed the case-notes of all their patients, looking for reports of ticcing-fit-type episodes. They found evidence of these in 8.7% of their patients, but they expect that the true figure would have been higher still had patients been asked specific questions about this sort of episode. These episodes were found to be more common in people whose underlying tics are more severe, but it appears that ‘ticcing fits’ are as common in people with Tourettes as coprolalia (involuntary swearing).
I hope this study will pave the way for future research and that it’ll give medics in different parts of the country, and the world, a standard definition to refer to. Until now different people have used different terminology, including ticcing fits, tic attacks and tic status.
I call them ‘ticcing fits’ even though I’m very clear they’re not epileptic, and settled on the term in the absence of anything more official. I use it because the episodes look like seizures, and need similar management. It certainly has more gravitas than the term I had been using, ‘The dying fish.’
I’ve found ‘ticcing fit’ to be a useful way of describing these episodes because it gives people an idea of what’s happening and how they can help, without them needing a detailed knowledge of Tourettes. This is useful when meeting new people or when trying to access support from professionals or services. Even so, ‘ticcing fit’ still doesn’t feel quite right to me and I use it for lack of anything better.
The St George’s team chose to refer to the episodes as ‘tic attacks’ and this seems to be the term currently favoured by the medical profession. But while I understand their reluctance to use the word ‘fit’ when the episodes aren’t seizures, ‘tic attack’ doesn’t sit comfortably with me either.
To me, this term manages to sound aggressive and informal or even comical at the same time, so it fails to convey the serious impact of these episodes. Such episodes can be brutal to experience, but many of my other tics are too. Every time I thump myself in the chest or pick up a knife feels like a potential tic attack. It’s a vague term and I think it could lead to confusion about what a tic attack actually was. For people who haven’t experienced one of these episodes it might be hard to convey how they differ from other very frequent tics.
It’s clear that a standard term for describing these episodes is necessary to ensure that people get the help they need and that further research can be undertaken. For now I’ll continue to use ‘ticcing fits’ but this may change in the future if a standard term is agreed.
Up to now there’s been very little formal literature about these periods of intense tics, so this study certainly seems a positive step towards a better understanding of Tourettes. What feels incredibly positive is that these episodes are being recognised, discussed and explored.