After years of involuntary shaking, I finally figured out what was causing it

Public speaking can be nerve-wracking for any MP candidate during an election campaign, but Oscar Reaney’s shaking hands when he unsuccessfully stood for the Conservative Party in Bethnal Green and Stepney in London this year had nothing to do with that.

“People think I’m really nervous when I shake, but I have to explain that I’m actually a confident speaker and sometimes I just shake,” he says.

“It happens all the time, but it’s most noticeable in social situations. For example, at receptions, where I have to hold a glass tightly or shake hands with a lot of people. That can be difficult.”

Oscar Reaney, who stood as a Conservative parliamentary candidate in Bethnal Green and Stepney

Oscar first noticed his hands shaking when he was a teenager, growing up in Eckington, Derbyshire. ‘I was only 14 when my left hand started shaking — I would spill coffee and people would ask me why I was so nervous,’ he recalls.

Even Oscar’s parents attributed it to social anxiety, and it never occurred to anyone, not even him – or his twin brother Cristian, who also developed a mild tremor – to go to the doctor.

‘It was never really a problem at school, but as I got older people sometimes assumed it was the alcohol, which was annoying, especially as I hadn’t been drinking. If I had a pound for everyone who told me to ‘just take it easy’ and ‘don’t shake’, I’d be a rich man.’

In his twenties, Oscar (at 24 the youngest councillor on the local council) became progressively worse, first affecting his hands, then his legs and jaw.

“Council meetings can get pretty heated, and I noticed that when I got agitated, my arms — and sometimes my legs — would shake,” he says. “Sometimes, when I was really stressed, my jaw would shake, and that would affect my voice.”

Following the Covid lockdowns in 2020, Oscar moved to London to become a parliamentary assistant to an MP: by this time his symptoms were beginning to affect his work, as it was sometimes difficult to take notes, so he had to use a laptop instead. His symptoms also seemed to worsen when socialising.

‘Friends would ask me to go to the pub after work and I would immediately panic,’ says Oscar. ‘That was my lowest point.’

Oscar searched his symptoms online and came across essential tremor, a movement disorder that affects an estimated one million people in the UK and causes involuntary rhythmic shaking in one or both arms or legs — and less commonly the jaw or head, tongue and voice. He visited his GP who confirmed the diagnosis.

“After years of symptoms, it was a relief to know what was causing it,” says Oscar.

Essential tremor is the most common movement disorder, eight to ten times more common than Parkinson’s disease, but is much less known.

The symptoms can be very specific and different from the symptoms of Parkinson’s disease or other causes of tremors. Essential tremors are often associated with certain activities, such as writing or eating, while the tremors of Parkinson’s disease are worse at rest.

Tremors may also worsen with stress, fatigue, hunger, heightened emotions, or extreme temperatures.

It is often misdiagnosed and mistakenly attributed to anxiety or excessive drinking, and as a result the condition can be “very stigmatising and probably under-reported”, says Dr Tom Gilbertson, a neurologist at Ninewells Hospital in Dundee.

“We don’t know exactly what causes the symptoms, but it’s possible that the hormone adrenaline, which is released when the body is in ‘fight or flight’ mode, affects muscle tremors in the peripheral muscles of the body,” he explains.

This may be due to a communication disorder between different parts of the brain, particularly networks in the cerebellum, the area that controls movement.

Although there is no diagnostic test, a DaT scan of brain function (which examines brain function rather than structure, as in an MRI) can help distinguish between essential tremor and Parkinson’s disease.

The symptoms can have a major impact on people’s lives: they avoid going out to eat or speaking in public. Some can’t do up buttons or zips, so they can’t dress themselves, while others have to give up their jobs.

Downton Abbey creator Julian Fellowes first experienced the symptoms in his late 50s, telling a podcast that he was shaking so badly at one point that he threw a glass of wine over his face during a dinner with a famous Hollywood producer.

Coronation Street actor Rob Mallard has also spoken publicly about his essential tremor, which began at the age of 14. It now affects his hands, arms, neck and sometimes his voice.

A survey for the National Tremor Foundation found that one in four patients said it affected their work life. More than half said their symptoms also caused mental health problems.

Although the disease is more common in older people, affecting one in 20 people over the age of 60, symptoms can also often begin in teenagers and early 20s. According to Dr. Gilbertson, “it can be difficult to diagnose the disease in young people until symptoms become more pronounced.”

According to Dr. Gilbertson, techniques such as mindfulness meditation can be helpful for mild symptoms because they help control the fight-or-flight response and adrenaline release once a diagnosis is made.

‘Drinking a glass of alcohol – within safe limits – before a social event can also calm the tremors in some people.’

Drug treatments include beta-blockers such as propranolol, which affect adrenaline production and reduce tremors, or epilepsy drugs such as primidone, which alter chemical transmission in the brain.

For tremors in the head, injections of botulinum toxin (Botox) are sometimes given to ‘freeze’ the shaking muscle.

Other treatments available through the NHS include deep brain stimulation (DBS), where electrodes are implanted into the deep structures of the brain and create a new electrical current that can short-circuit the tremor as the signals travel through the brain and into the muscles.

According to Dr. Gilbertson, the procedure is generally “very safe,” but the risk is greater in patients with multiple health conditions, such as heart disease or cognitive impairment.

A newer, less invasive NHS treatment for those who don’t qualify for DBS is MRI-guided focused ultrasound, which is currently available in London, Liverpool and Dundee. (Although it is also available privately and costs around £25,000.)

Here, a 3D frame is placed on the patient’s head, and four to six ten-second ultrasound waves are then focused on the thalamus (the area involved in involuntary movements). A study of 40 patients who received this treatment found that their tremors were still reduced by 70 percent five years later, the Journal of Neurosurgery reported in 2022.

However, this ultrasound approach is not suitable for everyone, especially those with mobility issues, as balance problems are a possible side effect. Other side effects include numbness and speech problems.

The overall message is ‘people don’t have to accept their tremor any longer — there’s something that can be done about it now,’ says Dr. Gilbertson. ‘It’s an opportunity to reset their lives.’

Oscar does not want to take medication and therefore uses self-management techniques to keep his tremors under control.

He also no longer drinks caffeine and sugary drinks (he feels they only make the situation worse) and he no longer leaves drinks at receptions, “so I can’t spill them.”

He adds: ‘It’s reassuring to know that there are other, newer treatments available now should I need them in the future.’