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I had a chronic cough for TEN YEARS but now an unlikely drug has changed my life
Bethan Galliers was delighted to be at the theatre with friends for a play she'd wanted to see for ages. But within minutes her enjoyment was rudely interrupted by a violent coughing fit — her own.
'The more I tried to suppress it, the worse it became,' says Bethan, 56, from Manchester. 'I was self-conscious about it so I went out into the foyer to get my coughing under control, before returning five minutes later.'
In fact, this experience at the theatre in Salford a few weeks ago was nothing new. For more than a decade Bethan has been living with a chronic refractory cough, the medical term for a condition with no obvious cause. It's a common complaint thought to affect one in ten of the population.
'I cough every single day,' says Bethan, a mother of two adopted teenage children.
'Some days are worse than others depending on what's causing it — anything from eating crusty bread to moving between a warm and cold setting.
Bethan Galliers, 56, has been living with a chronic refractory cough, the medical term for a condition with no obvious cause, for more than a decade
'Strong cooking smells can also set off my coughing. I once coughed for six hours straight when overseas students staying with us cooked a lovely Sri Lankan meal.'
On another occasion, she coughed uncontrollably after sitting next to a woman wearing very strong perfume.
A chronic cough is defined as a persistent one that lasts for eight weeks or more. More than twice as many women as men are affected (possibly due to hormonal fluctuations) and for some, it can last for decades.
Some people cough almost constantly, day and night; in others, it can occur in sudden bursts. In extreme cases patients experience blackouts (as they struggle to breathe), incontinence or even a rib fracture. Although it's common, it can often be misdiagnosed as a symptom of asthma or acid reflux, and so may be wrongly treated.
Experts at the University of Manchester and Imperial College London are among those now spearheading research into chronic cough — Jacky Smith, a professor of respiratory medicine at Manchester, leads a £3 million research project, Let's Talk About Cough, which aims to improve understanding and awareness of the condition.
Professor Smith told Good Health. 'Chronic cough is a condition only recently recognised. Often people would be told it was nothing serious and they just had to live with it.'
As Bethan has had to do, until recently.
Although she's had hay fever since her teens and is allergic to dust, neither explains the cough that started more than a decade ago and never went away.
'At first, it was just a bit annoying, but I didn't think it was anything particularly serious,' says Bethan, a community health development coordinator.
'I spoke to my GP on and off about it from 2012 onwards because it wasn't getting any better. Early on, I was given antibiotics, but the cough continued. My GP couldn't find a reason for it so I thought I just had to live with it.'
But it wasn't easy, as she says: 'Often in work meetings I'd cough quite a lot, especially after moving between rooms, or coming in from being outside, due to the change in temperature.
'I found myself constantly apologising for it and colleagues were always passing me a glass of water or offering to slap me on the back. Since the pandemic, people assume it's Covid, so if I start coughing in a shop for instance, everybody scatters.'
A chronic cough is defined as a persistent one that lasts for eight weeks or more. More than twice as many women as men are affected and for some, it can last for decades
There are few effective treatments for a persistent cough
In fact, emerging research suggests that the condition is caused by a 'sensitivity of the nerves controlling our cough reflex', says Professor Smith.
This explains why those affected often suffer bouts of coughing in response to temperature changes, or airborne irritants such as air freshener or perfume. These trigger nerves in the throat, which send an electrical signal to the brain, causing a cough.
Normally this mechanism is to prevent you inhaling dangerous chemicals, for instance.
Professor Smith says: 'Similarly, if you're eating dry, crumbly foods for example, this will stimulate nerves in the throat that respond to mechanical stimuli. This mechanism causes us to cough, preventing us from choking.
'But in patients with chronic cough these nerves become super-sensitive, so fire off responses all the time, even to things that aren't a threat. Patients often come to us because their cough is ruining their lives. Typically, they've had it for five or six years, sometimes longer.'
Dr Samuel Kemp, a consultant respiratory physician at Nottingham University Hospitals NHS Trust, sees many patients with chronic cough — often because their partner is more irritated by it than they are. 'One patient had a cough for 16 years,' he says.
The constant strain from coughing can have knock-on effects, including incontinence (especially in women), chest pain, abdominal pain and hernia.
For years, doctors had few effective treatments for the problem.
As Professor Smith explains: 'We would have to say to patients: 'I know this is horrible, but you just have to get on with it.' '
But one treatment that's emerged recently is the painkiller morphine — more specifically morphine sulphate tablets that slowly release 5mg (the smallest dose available) of the drug over 12 hours.
While it's not clear how it works, one theory is it acts on the nerves connecting the brain to the throat and airways. 'It was first shown to have an effect on chronic cough back in 2007, but it doesn't have a licence for this specific condition, so the doctor has to take responsibility for prescribing it as an off-licence medication,' explains Professor Smith.
'It helps about 50 per cent of patients, but you have to keep the dosage very low and closely monitored as it can be addictive, even in small doses.'
Then at the end of last year, a new drug called gefapixant was licensed for use in the UK.
This blocks a receptor, called P2X3, on the vagus nerve, which is one of the main nerves involved in triggering cough.
In trials involving 2,044 people with chronic coughs lasting an average of 11 years, the drug (which is taken daily) reduced cough frequency by 18.5 per cent, reported The Lancet in 2022.
Professor Smith explains that the drug blocks receptors in the throat that are sensitive to chemicals and temperature changes. This stops them responding to a chemical, ATP, which we all naturally have in our airways but its levels are raised in people with chronic coughs.
She says: 'The drug effectively stops ATP activating those sensitive nerves. By doing this, it reduces the number of times the cough is triggered.'
However, it is still to be sanctioned by the NHS spending watchdog, the National Institute for Health and Care Excellence, before it can be rolled out widely.
A second generation version, called camlipixant, is now in trials as gefapixant can have unwanted side-effects, such as reduced sense of taste.
Meanwhile, Bethan's condition improved after her GP finally referred her to a respiratory specialist towards the end of 2021.
After undergoing tests to rule out other conditions, Bethan was started on the slow-release morphine tablets last September.
It significantly reduced her coughing fits, by about 40 per cent, particularly at night.
And earlier this year a tiny camera was inserted into her nose and throat, revealing the most likely root cause of her persistent cough: inducible laryngeal obstruction, a rare throat disorder which causes the brief closure of the vocal cords in response to inhaling irritants. This can cause coughing and can also be triggered by it.
'The diagnosis made a lot of sense, as I always felt the cough came from my throat rather than my chest,' says Bethan.
She has since seen a speech and language therapist who recommended exercises to help relax her vocal cords, reducing the impact of the cough.
Bethan hopes to one day be prescribed one of the new drugs being developed to manage her cough even better. As she explains: 'I'm keen to go places like the theatre and cinema without having to worry so much about coughing.'