Tic storms or tic fits or tic attacks (I’ll call them tic storms as that is my preferred term) are a part of Tourettes that not many people know much about, including professionals. I have no idea if anyone has an estimate of the percentage of people with TS who have tic storms.
When I was diagnosed with TS I had never heard of them, I started hearing the phase tic fit, but didn’t fully understand it and had certainly never experienced it myself, that was until April last year.
Whilst away in Scotland with my partner at a weekend for people with TS I experienced my first tic storm. At least I knew what it was and although terrifying my partner had no idea what was going on, but dealt with it very well. For the next 2-3 weeks I had at least one a day. I experience them regularly, but the frequency can go up and down. Sometimes it can be several a day for several days in a row and then I might not have one for a week. They can also range in severity. Some have meant an A&E visit, or 999 call was necessary and they’ve resulted in a couple of brain CT scans and a fractured wrist.
So what are they? Well (for me anyway, remember this is my experience not everyone will be the same) they look like a stereotypical seizure, but are not a seizure. I’ll collapse to the floor and my body will jerk, my limbs will fly all over the place and my head will jerk in all different directions including banging on the floor. I also may make weird grunting sounds as a vocal tic, but they are basically my motor tics out of control. I also have breathing tics where I will hold my breath. I am completely conscious throughout all of this. This part of my tic storms can last anything from a few minutes upto about 8 hours, but on average about an hour.
Usually i will suddenly stop and lie motionless, my body cannot move, except I can usually blink and communicate with blinking. This paralysed like state can take upto several hours for me to slowly come out of. My body slowly begins to move, moving it for me will not help and only distress me more. My speech usually takes a few extra hours to return.
I can also have tic storms where the seizure like part will be short (a minute or so) then I’ll suddenly stop and be motionless, but then this pattern can repeat itself several times for a long length of times.
Each person with TS will want people to help with these differently. For me I need something soft under my head immediately and then if possible soft stuff under my limbs. Anything I could hit moved away from me. Restraining me or moving me should only be done if I am in danger as touching me can be extremely painful and restraining me means the tic builds up more and more and then an electric shock is running all over my body and my skin where I am being held burns and I become in a lot of pain. I don’t need an ambulance unless I become seriously injuried or have serious breathing difficulties which aren’t helped by my inhaler
This really is a side of TS that people don’t know about, not even a lot of professionals. People become really quite shocked when they see it and weren’t expecting it. If only the people who bully me in public knew this maybe it wouldn’t be so funny then
I can have a tic storm anywhere, at anytime. Sometimes I get a feeling of heat flooding my body and then I might have one, often though I’ve had the heat feeling and no tic storm, but most often they just happen, no feeling or warning.
I now have a medical ID bracelet and then round my neck on a lanyard a medical ID card with info about my tic storms and what to do, on the back of it.