A new innovative approach is being tested to treat people with a severe sleep disorder called narcolepsy.
About 10,000 Australians have the condition, which makes them feel extremely tired during the day and can cause sudden onset of sleep.
“If you’ve had three days without sleep, that’s how my every day is,” said Daisy Johnson who was diagnosed as a teenager.
People who have narcolepsy usually rely on stimulants to manage their condition during the day.
They can also take anti-depressants to deal with another common symptom that causes brief muscle paralysis.
“Until now, narcolepsy treatments have mostly focused on helping people with the condition feel more awake in the daytime,” Professor Ron Grunstein, RPA and Woolcock Sleep Medicine Specialist, said.
The Woolcock Institute of Medical Research is trialling a medication to help fix the fragmented sleep sufferers experience at night.
The sedative called sodium oxybate is linked to the controversial party drug GHB and is being trialled as a slow-release medication which is taken only once at night.
“At night, their sleep is quite fragmented so any medication that can deepen that sleep and consolidate that sleep is helpful for the condition,” Professor Grunstein said.
Preliminary studies suggest the slow-release medication produces significant benefits to patients, with no serious side effects.
“The more we learn about this treatment, we can argue the case that it needs to be funded,” Professor Grunstein said.
Ms Johnson is being screened for the trial to see whether she can participate and help make a difference to people’s lives.
“For us, to have a full on night sleep, where we can actually rest would give us so much quality of life,” she said.
Ms Johnson said she wasn’t able to continue with university studies or get her driver’s license due to the symptoms.
She takes medication during the day to fully function in her job as a chef.
Narcolepsy is caused by the loss of certain brain nerve cells which contain chemicals that help keep us awake and regulate our sleep-wake cycle.
Fewer than a quarter of sufferers have had their condition diagnosed.
Ms Johnson said people can be mistakenly labelled as having depression, chronic fatigue or being lazy.
Fortuntely, her GP recognised the symptoms straight away.
“I would fall asleep all the time. When I laughed I got paralysed, so my jaw could stop working. I remember at school I’d slide off my chair or I’d just collapse on the table with my head on the desk,” she said.
Mar 31, 2019