An awaking nightmare

Rachael Combe was coming apart under the burden of unrelenting insomnia. Nothing helped – until one day her dentist, of all people, told her she had the so-called “young, thin, beautiful woman’s sleep disorder”. Flattered, she investigated

Suffering insomnia, anxiety and irritable bowel, this writer discovered all three may be linked.

I’d wake in the middle of the night, gasping for breath as though surfacing from a near drowning. My heart would be racing, my skin clammy, my organs suffused with fear, like I’d been pickled in some bitter brine while I slept, and now, at 2 or 3am, I was fighting my way out of the jar. I’d then lie awake for hours, my life flashing before my eyes – but only the sad, bad, mad parts. Even the happy scenes curdled in this film – I was screwing up my children, ruining my marriage, wasting my life. And my life! Was I dying? This gasping and sweating in the night – something was wrong with me.

The episodes started in my early thirties and went on for years, gradually progressing in severity and frequency until, according to my Fitbit, I was averaging only four hours of sleep a night. I’d always been an insomniac, but this was a new level of hell. In the past, I’d prided myself on being a hard worker. Now I could barely keep my mind on a task for 15 minutes. My body began to break down: my ankle gave out mysteriously, and I had to wear an orthopaedic boot for months. I ached everywhere. I developed rosacea. It was hard to eat out because everything but the plainest food made me sick.

I’m fortunate to have good health insurance, and I put it to use. I went to my gynaecologist: was it perimenopause? No, she said, just stress and postpartum hormones. (I gave birth to my fourth child during this period – another red herring that threw everyone off: “Of course you’re tired!”) I went to my general practitioner: was it cancer, Lyme disease, hyperthyroidism, early-onset Alzheimer’s? He tested me for all of them. Nope. I went to a gastroenterologist and a nutritionist, who failed to find anything wrong with my stomach or diet. I went to a psychiatrist, who diagnosed anxiety and prescribed sleeping pills, which didn’t help me get more sleep but did make me feel more cotton-headed the day after I took them.

I followed all the “sleep hygiene” advice: no naps, getting up at the same time every day, no caffeine, no screens an hour before bed. I exercised. I took lavender baths, hung blackout curtains, wore a sleep mask and earplugs. I took a class on stress reduction. I meditated. I tried sleeping in a different room from my husband. I tried giving up wheat, dairy, sugar and – finally, painfully – wine. Nothing worked.

And then I crunched through the night mouthguard I wore to stop me from grinding my teeth. And it was my dentist, Dr Michael Gelb, who ended up diagnosing my problem when I went to get a new one. He peered down my throat and then motioned for his assistant to come over. “Look at that big tongue! No wonder!” he exclaimed. “This is easy. I know what you have. You’re waking up in a panic? In a cold sweat? Like someone just threw a rock through your window?” he asked. Yes, yes, yes, I told him. “You have low blood pressure? Cold feet?” Uh, yeah. “You have anxiety?” Yes. “Were you ever told you needed a palatal expander as a kid?” Umm... yes? “You have UARS – the young, thin, beautiful woman’s sleep disorder.”

In the 15 years I’ve known Gelb, he’s never steered me wrong – an expert in head and neck pain, he’s cured my TMJ (temporomandibular joint) problems and my husband’s loud snoring. And yet, he’s so quick to diagnose problems that can only be resolved with $4,000 retainers that I’m sometimes inclined to disbelieve him. I couldn’t hold my freakishly huge tongue in check: “Please. The ‘beautiful woman’s sleep disorder’?” I laughed. “That’s not a thing.” Gelb snap-snapped at his assistant, who printed a stack of articles from reputable journals. Turns out UARS is a thing. Upper airway resistance syndrome was first identified in adults nearly 25 years ago by researchers at Stanford University in the US. It’s a form of sleep-disordered breathing in which people get slightly less air than they should because some part of their airway is too narrow and – though they’re not actually in danger – their body perceives they’re suffocating and wakes them up.

UARS is often put in the same category as obstructive sleep apnoea (OSA), but its effects are subtler and its diagnosis trickier. Because the research on it is broad but rather shallow, experts disagree about almost every aspect of the disorder, from whether it’s distinct from OSA to the best therapies to ameliorate it. The exact prevalence of UARS isn’t known – in part because it’s thought to be so under-diagnosed – but it’s estimated that about five per cent of Australians suffer from sleep apnoea in general, or 1.2 million people.

“HE PEERED DOWN MY THROAT THEN MOTIONED FOR HIS ASSISTANT. ‘LOOK AT THAT BIG TONGUE! NO WONDER!’”