Bethan Galliers was delighted to be at the theatre with friends to see a play she had wanted to see for a long time. But within minutes her enjoyment was rudely interrupted by a violent coughing fit – her own.
“The more I tried to hold it in, the worse it got,” says Bethan, 56, from Manchester. “I was embarrassed so I went out into the hall to check my cough and came back five minutes later.”
In fact, this experience in the operating theatre in Salford a few weeks ago was nothing new. Bethan has been living with a chronic refractory cough – the medical term for a condition with no apparent cause – for more than a decade. It is a common ailment thought to affect one in ten people.
“I cough every day,” says Bethan, a mother of two adopted teenage children.
‘Some days are worse than others depending on the cause: from eating crusty bread to going from a warm environment to a cold one.
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 food smells can also trigger my cough. I once coughed for six hours straight when some foreign students staying with us cooked a delicious Sri Lankan meal.’
On another occasion, he coughed uncontrollably after sitting next to a woman wearing a very strong perfume.
Chronic cough is defined as a persistent cough that lasts eight weeks or longer. It affects more than twice as many women as men (possibly due to hormonal fluctuations) and in some cases can last for decades.
Some people cough almost constantly, day and night; in others, it can occur in sudden bursts. In extreme cases, patients suffer from fainting (because they have trouble breathing), incontinence, or even rib fracture. Although it is common, it can often be misdiagnosed as a symptom of asthma or acid reflux, so it can be treated incorrectly.
Experts from the University of Manchester and Imperial College London are among those now spearheading research into chronic cough: Jacky Smith, professor of respiratory medicine at Manchester, is leading a £3m 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 that has only recently been identified. People were often told it was nothing serious and they just had to live with it.”
As Bethan had to do until recently.
Although she has suffered from hay fever since her teens and is allergic to dust, none of this explains the cough that began more than a decade ago and has never gone away.
“At first it was just a little annoying, but I didn’t think it was anything particularly serious,” says Bethan, a community health development coordinator.
“From 2012 onwards I spoke to my GP from time to time because I wasn’t getting better. Initially 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 herself says: ‘I often coughed a lot during work meetings, especially after moving from one room to another or coming back from outside, due to the change in temperature.
“I found myself constantly apologizing for it and my coworkers would always hand me a glass of water or offer to pat me on the back. Since the pandemic started, people assume it’s COVID, so if I start coughing in a store, for example, everyone disperses.”
Chronic cough is defined as a persistent cough that lasts eight weeks or longer. It affects more than twice as many women as men and, in some cases, can last for decades.
There are few effective treatments for persistent cough.
In fact, recent research suggests the condition is caused by a “sensitivity of the nerves that control the cough reflex,” says Professor Smith.
This explains why sufferers often experience coughing fits in response to changes in temperature or airborne irritants such as air fresheners or perfumes. These activate the nerves in the throat, which send an electrical signal to the brain and trigger the cough.
Normally this mechanism serves to prevent the inhalation of dangerous chemical substances, for example.
Professor Smith said: “Similarly, if we eat dry, crumbly foods, for example, this will stimulate the nerves in the throat that respond to mechanical stimuli. This mechanism makes us cough, which prevents us from choking.”
“But in patients with chronic cough, these nerves become hypersensitive and respond all the time, even to things that aren’t threatening. Patients often come to us because their cough is ruining their lives. They’ve usually 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 coughs, often because their partner suffers more than they do. “One patient had a cough for 16 years,” he says.
The constant strain of coughing can have side effects such as incontinence (especially in women), chest pain, abdominal pain and hernia.
For years, doctors had few effective treatments for this 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 has recently emerged is the painkiller morphine, more specifically morphine sulfate tablets that slowly release 5 mg (the smallest dose available) of the drug over 12 hours.
Although it is not clear how it works, one theory is that it acts on the nerves that connect the brain to the throat and airways. “It was first shown to have an effect on chronic cough in 2007, but it is not licensed for this specific condition, so the doctor should take responsibility for prescribing it as an unlicensed medicine,” explains Professor Smith.
“It helps about 50 percent of patients, but the dose needs to be kept very low and monitored closely because it can be addictive, even in small doses.”
Then, late last year, a new drug called gefapixant was approved 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 coughing.
In trials involving 2,044 people with chronic cough lasting an average of 11 years, the drug (taken daily) reduced cough frequency by 18.5 percent, The Lancet reported in 2022.
Professor Smith explains that the drug blocks receptors in the throat that are sensitive to chemicals and temperature changes, preventing them from responding to a chemical, ATP, which we all have naturally in our airways but whose levels are elevated in people with chronic cough.
She says: “The drug effectively prevents ATP from activating those sensitive nerves. By doing this, it reduces the number of times the cough is triggered.”
However, it still needs to be approved by the NHS spending watchdog, the National Institute for Health and Care Excellence, before it can be widely rolled out.
A second-generation version, called camlipixant, is currently in development, as gefapixant can have unwanted side effects, such as a 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 began taking slow-release morphine pills last September.
It significantly reduced his coughing attacks, by about 40 percent, especially at night.
And earlier this year, she had a tiny camera inserted into her nose and throat, which revealed the most likely cause of her persistent cough: inducible laryngeal obstruction, a rare throat disorder that causes the vocal cords to briefly close 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 like my cough was coming from my throat and not my chest,” Bethan says.
She has since consulted 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 better control her cough. As she explains: “I’m looking forward to going to places like the theatre and cinema without having to worry so much about my cough.”