Bethan Galliers was delighted to be at the theater with friends to see a play she had wanted to see for a long time. But a few minutes later his enjoyment was abruptly interrupted by a violent coughing fit… his own.
“The more I tried to suppress it, the worse it became,” says Bethan, 56, from Manchester. “I felt self-conscious, so I went out to the lobby to control my cough, before returning five minutes later.”
In fact, this experience at the Salford theater a few weeks ago was nothing new. For more than a decade, Bethan has lived with chronic refractory cough, the medical term for a condition with no obvious cause. It is a common complaint that is believed to affect one in ten residents.
“I cough every day,” says Bethan, a mother of two adopted teenage children.
‘Some days are worse than others depending on the cause: anything from eating crusty bread to switching between a warm and cold environment.
Bethan Galliers, 56, has been living with chronic refractory cough, the medical term for a condition with no obvious cause, for more than a decade.
‘Strong kitchen odors can also make me cough. I once coughed for six hours straight while some foreign students staying with us were cooking a delicious Sri Lankan meal.’
On another occasion, he coughed uncontrollably after sitting next to a woman wearing very strong perfume.
A chronic cough is defined as a persistent cough that lasts eight weeks or more. More than twice as many women as men are affected (possibly due to hormonal fluctuations) and in some cases 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 fainting (while having trouble breathing), incontinence, or even a rib fracture. Although common, it can often be misdiagnosed as a symptom of asthma or acid reflux and therefore treated incorrectly.
Experts from the University of Manchester and Imperial College London are among those now leading research into chronic cough: Jacky Smith, professor of respiratory medicine in 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 recently recognized disease. People were often told that it was nothing serious and that they had to live with it.”
As Bethan has had to do, until recently.
Although she has 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.
“It was a little annoying at first, but I didn’t think it was anything particularly serious,” says Community Health Development Coordinator Bethan.
‘I spoke to my GP on and off about this from 2012 onwards because it wasn’t getting better. At first they gave me antibiotics, but the cough continued. “My GP couldn’t find the reason so I thought I had to live with it.”
But it wasn’t easy, as she herself says: ‘Often during work meetings I would cough a lot, especially after changing rooms or coming back from being outside, due to the change in temperature.
“I found myself constantly apologizing for it and my colleagues would always hand me a glass of water or offer to pat me on the back. Since the pandemic, people assume it’s Covid, so if I start coughing in a shop, for example, everyone scatters.’
A chronic cough is defined as a persistent cough that lasts eight weeks or more. More than twice as many women as men are affected, and in some cases it can last for decades.
There are few effective treatments for persistent cough.
In fact, emerging research suggests that the condition is caused by a “sensitivity of the nerves that control our cough reflex”, says Professor Smith.
This explains why sufferers often suffer coughing fits in response to changes in temperature or airborne irritants such as air fresheners or perfumes. These activate nerves in the throat, which send an electrical signal to the brain and cause coughing.
Typically, this mechanism serves to prevent you from inhaling dangerous chemicals, for example.
Professor Smith says: ‘Likewise, if you eat dry, crumbly foods, for example, this will stimulate the 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 they trigger responses all the time, even to things that do not represent a threat. Patients often come to us because their cough is ruining their lives. Normally they have had it for five or six years, sometimes longer.”
Dr Samuel Kemp, a respiratory specialist at University Hospitals Nottingham NHS Trust, sees many patients with chronic coughs, often because their partner is more irritated than they are. “One patient had a cough for 16 years,” he says.
The constant straining of coughing can have knock-on effects, such as 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 have to move on.'” ‘
But one treatment that has recently emerged is the pain reliever morphine, more specifically morphine sulfate tablets that slowly release 5 mg (the smallest dose available) of the medication over 12 hours.
While it’s unclear 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 has to take responsibility for prescribing it as an unlicensed medicine,” explains Professor Smith. .
“It helps about 50 percent of patients, but you have to keep the dose very low and monitor it closely, as it can be addictive, even in small doses.”
Then, late last year, a new drug called gefapixant was authorized for use in the UK.
This blocks a receptor, called P2X3, in 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 (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. This prevents them from responding to a chemical, ATP, which we all have naturally in our airways, but its levels increase in people with chronic cough.
She says: ‘The drug effectively prevents ATP from activating those sensitive nerves. By doing this, you reduce the number of times the cough is triggered.’
However, it still needs to be sanctioned by the NHS’s spending watchdog, the National Institute for Health and Care Excellence, before it can be widely implemented.
A second-generation version, called camlipixant, is currently being tested, as gefapixant may 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 in late 2021.
After undergoing tests to rule out other conditions, Bethan began taking slow-release morphine tablets last September.
He significantly reduced his coughing attacks, about 40 percent, especially at night.
And earlier this year they inserted a small camera into his nose and throat, revealing the most likely cause of his persistent cough: inducible laryngeal obstruction, a rare throat disorder that causes the vocal cords to briefly close in response to inhalation of irritants. This can cause coughing and can also be triggered by it.
“The diagnosis made a lot of sense, since I always felt like my cough was coming from my throat and not my chest,” Bethan says.
She has since visited a speech and language therapist, who recommended exercises to help relax her vocal cords and reduce the impact of coughing.
Bethan hopes to one day be prescribed one of the new medications being developed to even better control her cough. As she explains, “I love going to places like the theater and movies without having to worry so much about coughing.”