Health & Lifestyle

How to tell if you’ve REALLY got Tourette’s as Mel Sykes self-diagnoses disorder that affects Lewis Capaldi and Billie Eilish: Doctors say you CAN suddenly get tics in your 50s… but the true cause might be something else

Mel Sykes yesterday revealed she has self-diagnosed Tourette’s, describing herself as being ‘wired completely different’.

The 52-year-old TV presenter’s announcement has shone a spotlight on the poorly-understood tic disorder.

Tourette’s, which usually begins in childhood, is thought to affect around 300,000 Brits and 1.4million Americans, including Lewis Capaldi and Billie Eilish.

Although rare, researchers acknowledge it is entirely possible adults can suddenly be struck down with tics.

Candid: Melanie Sykes, 52, has revealed she self identifies with Tourette's after previously detailing her 'life changing' autism battle

Candid: Melanie Sykes, 52, has revealed she self identifies with Tourette’s after previously detailing her ‘life changing’ autism battle

Dr Melina Malli, an Oxford University fellow who specialises in Tourette’s, said: ‘It is just very rare.’

In fact, it is so extraordinarily rare that no figures exist on just how common adult-onset tics are.

Even researchers themselves have admitted they cannot answer that question and the NHS says the phenomenon occurs only ‘very occasionally’.

Doctors believe adult-onset tics might simply be a ‘reactivation’ of childhood ones.

Such tics might have been so mild that as kids, sufferers didn’t notice them. On top of that, their parents may have simply glossed over them.

How to tell if you’ve got Tourette’s

Tourette’s syndrome is a neurological disorder that causes involuntary tics.

There is no single test for Tourette’s syndrome.

You can be diagnosed with Tourette’s if you’ve had had several tics for at least a year.

‘There are many conditions which include tics it might not be Tourette’s,’ says Dr Melina Malli.

She added: ‘Tourette’s is a very specific condition, in order to be diagnosed you have to have both vocal tics and motor tics.’

There’s no cure for Tourette’s syndrome and most children with tics do not need treatment for them.

But behavioural therapy ad medicine can help control tics. 

 Source: NHS

Common tics include head jerking, grunting, eye blinking and the internationally-recognised sign of Tourette’s — uncontrollable swearing.

Yet, the unexpected development of tics doesn’t necessarily signal Tourette’s, says Dr Malli, who last year co-authored a paper into the topic of tics in young people.

She told MailOnline: ‘There are many conditions which include tics it might not be Tourette’s.’

Tics can happen randomly and can be associated with stress, anxiety and tiredness, according to the NHS. 

Taking illegal drugs and health conditions such as cerebral palsy and Huntington’s disease can also trigger the movements, experts say. 

‘Tourette’s is a very specific condition,’ Dr Malli adds.

‘In order to get diagnosed, you have to have both vocal tics and motor tics.’

Vocal tics include humming or yelling out certain phrases. Blinking or arm jerks are examples of motor tics.

On top of that, Tourette’s is usually only diagnosed if someone has endured tics for over a year. 

And current diagnostic criteria says the onset of tics should occur before the age of 18, Dr Malli said. 

But, in some cases, doctors still diagnose adults with Tourette’s.

One example is Elizabeth Hall, a mother of three from Bedfordshire, who was  diagnosed with Tourette’s in her 40s.

She started suffering physical tics as she was approaching the menopause.

Ms Hall, who was the subject of a Channel 4 documentary in 2020, did not think it was Tourette’s because she believed it was only a childhood condition. But after initially trying to cover them up, was later diagnosed. 

Her vocal tics can be foul, obscene or racist — including giving the Nazi salute and calling people a c***.

Her son Robert, who is now in his early 20s, also has the disorder — but he started showing symptoms when he was seven. 

Late-onset tic disorders in adults are uncommon, but could be more prevalent than we realise, according to a Canadian study published in the Neurology, Neurosurgery & Psychiatry Journal in 2000. 

Although there is no evidence of an increase in Tourette’s diagnosis in the UK during lockdown, there was anecdotally a surge in teenage girls developing tics. 

Specialist clinics at Great Ormond Street and Evelina children’s hospitals in London reported that prior to the pandemic no more than six teenage girls presented with tics in one year.

But in March 2021 there were as many as three or four referrals a week.

Experts said these tics were triggered by stress and anxiety during lockdown and watching those with tics on social media — though experts this only happens to those who are already susceptible to tics.

Appearing on an episode of Alan Carr’s Life’s A Beach podcast, which was released on Monday, Sykes talked about her new book where she discusses being a woman in the media and her journey to being diagnosed with autism.

In the interview, Carr confirmed she was able to swear on the podcast to which she said: ‘Oh good, but I’ll try not to, because I’ve just discovered I have Tourette’s.’

The former model added: ‘I am wired a completely different way and I’m only just understanding it.’

Following the release of the podcast, she clarified in a tweet: ‘Hello there. For the record I have NOT been “diagnosed” with Tourette’s. 

‘I self identify because of my studies and understanding of the pre existing “conditions” that are hand in hand in some autistic people.’

WHAT IS TOURETTE’S?

Tourette’s syndrome is an inherited neurological condition that causes you to make involuntary movements and sounds called tics, according to the NHS website.

Motor tics might include eye blinking, neck and head jerks, and arm and leg movements, while vocal tics might include throat clearing, repeating words or phrases, stuttering and grunting.

However, tics can occur in almost every part of the body including tics that cause deep abdominal muscle tension known as ‘internal tics’ or ‘stomach tics’, according to Tourette’s Action.

It is not uncommon for people with Tourette’s to also experience conditions such as Obsessive Compulsive Disorder (OCD), Attention Deficit Hyperactivity Disorder (ADHD) and anxiety, says Tourette’s Action.

The charity stresses that the biggest misconception around the condition is that it causes everybody to swear.

But Coprolalia, the clinical term for tics that produce socially unacceptable words, only affects approximately 15 to 20 per cent of people with Tourette’s.

Tourette’s is thought to effect 300,000 Britons and more than half a million Americans suffer from the condition, most of whom are children.

The condition usually starts during childhood, between the age of two and 14, before improving within years. Sometimes it goes away completely.

There is no cure for the syndrome but treatment — such as therapy and medicines — can help manage symptoms.

Source: Tourette’s Action

Celebrities diagnosed with Tourette’s 

Billie Eilish

The 21-year-old singer was diagnosed with the neurological condition when she was just 11.

Billie Eilish, 21 was diagnosed with the neurological condition when she was just 11

Billie Eilish, 21 was diagnosed with the neurological condition when she was just 11

She spoke about her condition last year after having a tic on while appearing on season four of David Letterman’s Netflix talk show My Next Guest Needs No Introduction.

‘I never don’t tic at all, because the main tics that I do constantly, all day long, are like, I wiggle my ear back and forth and raise my eyebrow and click my jaw … and flex my arm here and flex this arm, flex these muscles,’ Billie told Mr Letterman. 

‘These are things you would never notice if you’re just having a conversation with me, but for me, they’re very exhausting,’ Billie said. 

‘It’s not like I like it, but I feel like it’s part of me. I have made friends with it. And so now, I’m pretty confident in it,’ she admitted. 

Lewis Capaldi

Glaswegian singer Lewis Capaldi, 26, revealed to his fans he was diagnosed with Tourette’s after experiencing tics on stage. 

Singer Lewis Capaldi, 26, says he experiences tics on stage. He explained he was only recently diagnosed and he was getting Botox injections to freeze his muscles to try to control the tics

Singer Lewis Capaldi, 26, says he experiences tics on stage. He explained he was only recently diagnosed and he was getting Botox injections to freeze his muscles to try to control the tics

The Hold Me While You Wait singer told his fans in an Instagram live session in September 2022: ‘I have been diagnosed with Tourette’s. I wanted to speak about it because I didn’t want people to think I was taking cocaine or something.

‘My shoulder twitches when I am excited, happy, nervous or stressed. It is something I am living with. It is not as bad as it looks.’

He explained he was only recently diagnosed and he was getting Botox injections to freeze his muscles to try to control the tics.

Mother, who developed Tourette’s in adulthood

Elizabeth Hall, who developed Tourette’s when she was 40, says when she is ticking she can be foul, obscene or even racist. 

The mum of three appeared on Channel 4’s The Mum Who Got Tourette’s in April 2020 with husband Simeon, 50, her son Robert, 17, who also suffers from the condition, and her daughter Eloise, 20.

Elizabeth Hall says she developed Tourette's in her 40s

Elizabeth Hall says she developed Tourette’s in her 40s

In the Channel 4 documentary the Bedfordshire mum says they are like any ‘normal family but with a few more swear words’. 

When she first experienced tics she did not know it was impossible for adults to get them. 

She admitted: ‘When the physical tics started, I tried to cover them up. I thought I had a brain tumour, or Parkinsons, or some form of psychosis. It didn’t occur to me I had Tourette’s, even though I was dealing with it every day with Robert. I saw four experts before I accepted it. I didn’t know adults could get it.’ 

‘I know mine started to come out when I was approaching the menopause, so I suspect there are hormone issues going on there too,’ says Elizabeth. ‘Looking back, as a child I did use to rock backwards and forwards, but my mother would tell me not to. I do wonder if I just suppressed things then.’

As an adult, she was in denial for many months. ‘It started with my mouth twitching. I’d try to cover it, and hold down the muscle. Then it started with my eyes.’

Five years on, though, she has developed an astonishing acceptance. ‘You have to,’ she argues. ‘You have to accept it, learn to live with it make friends with it.’

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