A while back Suzanne Curyer was working as a busy senior executive for a not-for-profit organisation.
She loved her work but there was one big problem: no matter how much shut eye she got, Suzanne felt extremely tired all the time.
“I was in bed for like, a good eight hours, but I just didn’t feel like I was getting enough sleep.
“I was walking around in a bit of a fog. It was hard to concentrate, and I had very low energy.”
In fact, Suzanne was so tired when it came to the weekends she had to spend most of the time in bed.
She didn’t dare make plans to catch up with family or friends for fear she would lack the energy to follow through.
And as a single woman at the time, this lack of social connection had serious impacts.
“I relied very heavily on my social networks for my wellbeing.”
It turns out Suzanne had a common sleep disorder called obstructive sleep apnoea (OSA).
But it took years for her to get treatment and, even then, help only came after some chance encounters.
What is obstructive sleep apnoea (OSA) and its impacts?
OSA causes the muscles at the back of the throat to temporarily collapse – partially or completely — while you’re asleep, and this stops you from breathing properly.
Breathing can stop for up to a minute before the lack of oxygen triggers a reflex that wakes you up gasping for air. And this can happen hundreds of times through the night.
Common symptoms of OSA include snoring, not feeling refreshed when you wake up, and having fatigue and sleepiness through the day. Sometimes people experience morning headaches and difficulties with concentration and memory.
At the extreme end of the spectrum, people with this condition can fall asleep at the most inopportune times — while having a conversation, waiting at traffic lights or worse, driving.
People with OSA are at least twice as likely to have vehicle accidents related to being sleepy during the day, says Andrew Vakulin from the Adelaide Institute of Sleep Health at Flinders University.
However, it doesn’t affect everyone in this way. Some people with OSA have no apparent symptoms at all.
For Suzanne, the daytime tiredness caused by her condition meant she was still able to achieve her work goals, but had little energy left for anything else.
“It was a struggle,” she says. “You put everything into work.”
Estimates of the number of people with OSA vary depending on what is measured, but according to Dr Vakulin it affects at least 20 per cent of the adult population, with most people unaware they have it.
OSA has also been linked to an increased risk of chronic conditions like diabetes, coronary heart disease, depression and dementia.
It’s more common in men, people who are overweight, and older people. But OSA can still occur in all age groups, even children.
“Our research has shown significant prevalence in young people aged 18 to 30,” Dr Vakulin says.
Getting help for sleep apnoea
If you think you might have OSA, the first port of call should be your GP, but it also helps to have some information about the condition and what treatment options exist.
Suzanne says it took her some years before she saw a GP who twigged she needed a referral to a sleep specialist.
Sleep specialists include respiratory physicians who are medically trained to deal with sleep breathing disorders, and sleep psychologists who can help with insomnia. It turns out a large proportion of people have both conditions, something called COMISA.
Suzanne’s sleep specialist ordered her a ‘sleep study’ that involved wiring her up overnight to measure things like her breathing, episodes of waking in the night, leg movements and sleeping position.
The results of this study led to Suzanne being diagnosed as having OSA, and her specialist then recommended she get a device called a CPAP machine.
What is a CPAP machine?
A CPAP (continuous positive airway pressure) machine forces air via a mask into your airways to keep them open while you are asleep .
It’s considered the ‘gold standard’ for treating OSA, but unfortunately at least of half of people who try CPAP can’t tolerate it, or only use it a few hours a night.
During her two-week trial of CPAP, Suzanne decided the machine was not for her – not least because her health fund wouldn’t fork out the thousands of dollars it was going to cost her to buy.
“It was horrible. I found it very claustrophobic,” she says.
“It was so uncomfortable I ended up, either removing the mask in my sleep or taking it off so I could get to sleep.”
Bhajan Singh, a sleep and respiratory physician at Sir Charles Gairdner Hospital in Perth, says there has to be “a lot of encouragement and a lot of troubleshooting” when it comes to using CPAP.
“In our centre we spend a lot of energy and time getting people established on therapy in the first month,” Dr Singh says.
So be sure to try before you buy, and to have someone you can contact easily for help if the machine keeps you awake. You may need to get a different mask, or to adjust the pressure of the machine for it to work properly.
Beware conflicts of interest
A recent government inquiry highlighted the lack of regulation of the CPAP industry, and there’s concern about people just buying machines (sometimes online) directly, without any medical supervision.
A further problem is the potential conflict of interest when a machine is being sold by the same company that has diagnosed the OSA.
“It would be like the doctor who was prescribing you your antibiotic also owned the pharmacy,” Dr Singh says.
Patients are sometimes encouraged to buy the most expensive devices even when a cheaper one would suffice, he says, adding CPAP is sometimes recommended for cases of sleep apnoea that may be able to be treated without a machine.
“I see a lot of patients … who have ended up with equipment that they probably didn’t need,” Dr Singh says.
Mouth splints, buzzers and drugs
For some people losing weight, getting more exercise and reducing cigarette or alcohol consumption could help their OSA, but others may need more help.
Apart from CPAP, there’s a device used to manage sleep apnoea that looks like a mouthguard and is sometimes called a mandibular advancement splint (MAS).
It pushes your lower jaw forward to help stop your airways from collapsing when you sleep.
You need to get a referral to a ‘sleep dentist’ to find out if this is a suitable option and get a customised splint built for your mouth.
Cheaper splints, sold as anti-snoring devices, are available elsewhere but the fit may not be as good.
There are in fact a plethora of anti-snoring devices that may help some people, including tape and chinstraps to keep your mouth shut while you sleep.
Then there are ‘positional devices’, which stop you from sleeping on your back, which is when you are more likely to have OSA.
These might be very low-tech — think of strapping something bulky onto your back. A more expensive option would be a strap-on buzzer that vibrates when you roll on your back.
Even though treatments like buzzers may not be capable of keeping your airways open in the way that a CPAP machine can, there’s some evidence they are effective at preventing daytime sleepiness.
“If they’re used the entire night, the overall net benefit could be greater,” Dr Vakulin says.
You can also ask your doctor about medications used for treating OSA.
Turning to surgery
Suzanne will never know whether these other options could have helped.
After her failed attempt at using CPAP, she was back at square one.
She says the sleep specialist didn’t follow up with her, and she was never advised of any other treatment options.
“My experience was so unsatisfactory,” she says.
Just like for her diagnosis, the solution to Suzanne’s OSA came about quite by chance.
One day she noticed an ad in a newspaper calling for volunteers for a trial of surgery to treat OSA for those who couldn’t tolerate CPAP. She jumped at the opportunity.
Surgery for OSA opens up the back of the throat to prevent obstruction and involves an ear, nose and throat specialist.
According to the Sleep Health Foundation, surgery for OSA is more of a “last resort” treatment for adults.
But for Suzanne, even though it meant taking weeks off work and was going to be quite painful, she felt it was her only choice.
“The quality of my life had declined in terms of my being able to do the things that I wanted to do.”
What’s the best treatment for you?
There’s no simple answer here because OSA and its impacts vary so much between individuals.
“There are different anatomical and physiological mechanisms … that contribute to OSA in different people,” says Dr Vakulin, who is part of a team working out how to target therapies to individuals.
So there will be a bit of trial and error involved if you are looking for treatment, and in some cases a combination of therapies might work best.
As for Suzanne, she says surgery gave her less flexibility in her tongue so she now can’t enjoy her favourite toffees anymore. But she doesn’t regret having it, because doing something about her OSA has really improved her quality of life.
“I now have far more energy, I sleep better, I feel like I’m getting a good night’s sleep … I’m more alert,” she says.
And this means rather than trying to catch up on sleep over the weekend she can spend the time with friends and family.
“It’s been life changing.”
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