Tourette’s tic left me afraid to hold my son. Then doctors put electrodes in my brain – and this is the effect it’s had on my life…

To most people eating out is a pleasure, but until recently for Tom Dufton this, like many social outings, often descended into an experience to be endured rather than enjoyed.

It wasn’t that Tom, 36, who runs his own horticulture business, isn’t sociable — he is — it was the reaction from others that made the experience so awkward.

Since the age of six, Tom has lived with Tourette’s syndrome, a neurological condition that affects around 300,000 people in the UK, according to the charity Tourettes Action, and which causes them to make sounds or movements — known as tics — over which they have no control.

In Tom’s case, these tics have changed over the years — from blinking or clicking his jaw to grunting and, at one point, kicking out his leg at random. Five years ago, it turned into almost constant spitting.

‘Of all the tics I’ve had, this has lasted the longest and been the hardest to deal with,’ says Tom, who lives near Truro, Cornwall, with his wife, Emily, 32, who works in human resources, and their baby son, Henry.

‘I absolutely hated it. It made me so self-conscious. I would see people staring and thinking: “Why is he doing that?” I wanted to shout: “I can’t help it!”

‘I wouldn’t go to the theatre or the cinema — it’s so quiet there that everyone would have heard me, which would have been embarrassing,’ says Tom.

But now he can, because in March he underwent a five-hour operation to put two electrodes into his brain, in a procedure known as deep brain stimulation (DBS). These electrodes send out electrical impulses that calm activity in the part of his brain that’s thought to trigger his symptoms.

There was no guarantee it would work — the procedure was part of a trial to see who would benefit — and the risks were considerable. ‘I was warned it could bring on a stroke, personality changes, infections and death,’ says Tom. But the gamble appears to have paid off and the operation was ‘life-changing’.

He says: ‘My spitting has virtually stopped, as have my other tics [such as making noises while he spoke and occasional jerky movements] and I can’t explain what a big deal that is. It has made a massive difference to my confidence and I am already going out more.

‘The other day I went to a pub quiz, which would have been really awkward before.’

Four times more common in boys than girls, Tourette’s syndrome typically begins around the age of seven, ‘but a small number develop it as adults,’ says Eileen Joyce, a professor of neuropsychiatry at University College London. She says around 60 per cent of children grow out of it, but it can become a severe problem for the rest.

Singer Lewis Capaldi said his 2022 diagnosis was a relief as he feared his symptoms — his left shoulder repeatedly jerked and his head twitched — might be due to ‘a degenerative disease’.

For a small proportion of patients, the tics are so severe they can injure themselves, says Professor Patricia Limousin, a neurologist at the National Hospital for Neurology and Neurosurgery in London, who is heading up the trial that Tom is on.

‘I have seen people whose tic causes them to repeatedly jerk their neck and they end up with arthritis,’ she says.

‘I’ve even known it to damage the spinal cord and cause paralysis — it is rare but some patients need a wheelchair as a result.’

While Tourette’s is often associated with an uncontrollable urge to swear — known as coprolalia — in fact fewer than 10 per cent of those affected do this.

‘It’s not just swearing, they use insulting words,’ explains Professor Joyce. Tourette’s is thought to be caused by overactivity in a communication circuit that loops between areas of the brain that control movement.

‘People with Tourette’s appear to have fewer inhibitory interneurons than normal. These are nerve cells that control the activity of other nerve cells in the brain which control movement,’ says Stephen Jackson, a professor of cognitive neuroscience at Nottingham University.

‘Without these inhibitory cells, nerve pathways in this region fire spontaneously and are not under a normal level of control.’

Why these inhibitory cells are lacking is not clear. It may be genetics (Tourette’s has a genetic element) but ‘another possibility is inflammation’, adds Professor Jackson.

The tics are thought to begin in childhood (as the brain starts to develop) and lessen for some after the age of 18 ‘possibly because as the brain matures, it adapts to the abnormality’, says Professor Joyce.

The impact of Tourette’s can extend beyond the tics.

‘Those affected often get bullied or excluded from school,’ says Professor Jackson. ‘People have been thrown off buses or out of restaurants or cinemas — and there is a suicide risk.’

Professor Joyce says when it comes to treatments, the best current evidence is for antipsychotics [such as haloperidol and pimozide], but given in much lower doses than in psychosis.

‘They work by blocking the transmission of a brain chemical [which sends messages between cells in the overactive brain area] involved in the production of the tic,’ she explains.

However, they don’t work for all and can trigger severe fatigue and/or restlessness, which some find intolerable.

Tom has been prescribed numerous antipsychotics over the years. As well as causing side-effects such as sweating, they didn’t stop the tics altogether but ‘subdued them a bit’. Yet he adds: ‘Without them, I wouldn’t be able to stop moving or ticking.’ Tom was also taking medication for the anxiety and depression that his condition caused, and for obsessive compulsive disorder and ADHD that commonly co-exist with Tourette’s. Doctors had warned him that taking so many tablets risked kidney damage.

Tom heard about the trial earlier this year from one of his specialists who said that his age and the severity of his tics made him eligible. Plus there came an added incentive with fatherhood.

‘Henry is one factor behind me going through with this as I want to be in the best position I can as a father,’ he says.

‘I worried about holding him in case I experienced a tic that caused a jerky movement and I didn’t want him to have to worry about me having Tourette’s.’

Having discussed the risks with Emily, Tom decided to go ahead with the operation.

The electrodes in his brain measure 1.5mm in diameter and emit a constant electrical impulse. They are controlled by a pacemaker in his chest (connected by wires running through his neck) and can be switched up or down remotely by the patient or doctor to suppress symptoms.

‘It’s the same treatment used for Parkinson’s and essential tremors, but in this case the electrodes are put into a different part of the brain,’ says Professor Limousin.

‘Previous trials showed some benefit in severe Tourette’s but also variability in the response to the treatment; we’re trying to get more evidence and understanding of the factors affecting this.’

A review of studies, published in 2019 in the journal Neuropsychiatric Disease, found DBS reduced Tourette’s symptoms by 40 per cent on average.

But the procedure is suitable for only the most severe — approximately 5 per cent of cases — because the risks are too great for others.

There are less intrusive new treatments in the pipeline. Professor Jackson is part of a team that developed a watch-like device, called Neupulse — which has been tried by Lewis Capaldi.

W orn on the wrist, it emits electrical pulses that stimulate the median nerve, which runs from the wrist into the cortical areas of the brain. These areas are thought to be more sensitive in those with Tourette’s.

A trial involving 121 people who used it five days a week for a month found it reduced tic severity by around 35 per cent, according to a report in the Journal of Neuropsychology in March 2023.

The device, which it is hoped will be in production by 2026 and will cost around £300 to £400, is now being reviewed by the National Institute for Health and Care Excellence (NICE) to see if it can be made available on the NHS.

Tom will have regular monthly check-ups to ensure the stimulation level is correct for him but he is ‘quietly hopeful’ his life has changed for good.

‘I was on the phone to my mum the other day and she was really overwhelmed that I was talking with no noises or spitting,’ he says. ‘I can’t quite believe how big a difference it has made.’