In May of this year, I was due to fly to Europe to complete the research for my sixth novel. The night before my flight, I was up in the small hours, sitting on the lounge with a cup of tea. I was excited for the trip, but concerned about an increasingly sore throat.
As I finished the tea, my stomach dropped—the same feeling you might experience at the drop on a rollercoaster, and then came a wave of oddly localised nausea that started at the pit of my stomach and rose through my chest. I felt instantly confused. I was sitting on my own lounge holding my own tea mug, but I had no idea where I was.
I lost time then, and when I woke, I was somewhere else—and it was dark. All kinds of odd sensations were happening in my body, including a shocking pain in my chin. I still had no sense of where I was, and I couldn’t speak—it was like the link between my brain and my mouth had been broken. Eventually, I croaked out a cry and my husband roused. “Don’t worry,” he soothed me, when he found me sprawled on the tiles outside our bedroom door. “You’ve just fainted again because you’re sick.”
I was in my early twenties the first time I ‘fainted’. It was a hot Sydney evening and I was out jogging after work—feeling fantastic right up until I felt the ‘roller-coaster-dip’ sensation. The next thing I knew, time had passed, and I was waking up on the concrete. My GP ran some blood tests, and we put the whole thing down to dehydration and low iron levels.
Listen: Lily Bailey always knew something wasn’t quite right with her routine. (Post continues…)
It happened again the following year when I had gastro, then again a few months after that when I was working through the night to meet a deadline (I came to on the floor of the staff kitchen, reheated my coffee, and went back to my desk). I collapsed in my husband’s arms in the emergency room when I had an anaphylactic reaction to penicillin. I passed out on the floor in the ensuite one morning when I had tonsillitis.
But there were months or years between these incidents, and I was always sick or exhausted at the time. If you had asked me about my health history, my tendency to ‘faint’ would barely rate a mention.
This episode in May immediately felt different. Even after my husband helped me up from the floor, I was still disoriented and weak, still struggling to speak fluently several minutes later, and I had no memory of anything after those odd moments on the lounge—no clue at all how I’d come to be injured and unconscious in another part of the house.
We called an ambulance, but the paramedics thought I’d just had some vertigo and told me I should just go back to bed. But I’m a novelist, and I was still struggling to put my words together—there was no way I was going shrug that off. I insisted they take me to the hospital.
The next week, instead of travelling to Poland and finishing my book, I underwent a series of neurological and cardiac tests. My chin apparently copped the brunt of the impact when I collapsed, and the swelling and bruising soon took on a green/black hue that lead my children to nickname me “Elphaba”.
But I felt otherwise fine, so I was shocked when an EEG identified abnormal activity in my left temporal lobe. My GP referred me to a neurologist, and she filled out my travel insurance form: reason for claim, focal epilepsy.
My knowledge of epilepsy at that point was limited to the convulsing-on-the-ground-type-seizure stereotype. But there are around 40 types of epilepsy syndromes, and many of these types are not convulsive.
'Seizure’ is a broad term—it just describes a disruption in the normal pattern of electrical impulses in the brain. For some epilepsy sufferers, seizure activity is generalised across the brain, but around 60 per cent of people who have epilepsy have focal onset seizures, which means their seizure activity begins in a single part of the brain.
In these cases, seizure symptoms can be subtle, as simple as a lapse in concentration or the experience of an unusual feeling…like the sudden sensation of your stomach dropping, as if you’re on a rollercoaster. This feeling has a name, by the way—medical types call it a ‘rising epigastric sensation’.
In my case, the seizure activity happens in my temporal lobe—which actually puts me in highly esteemed literary company; Dostoyevsky, Flaubert and Lewis Carrol were all thought to suffer the same. Most of the time I don’t even know when the seizure activity is happening, I certainly didn’t notice anything unusual during the repeated EEGs which identified it.
When the stressors pile up—sleep deprivation, sickness or even stress—that background seizure activity has the potential to escalate into larger, loss-of-consciousness events.
As I write this, it’s been six months since that episode in May. I had a second episode a few weeks ago, a much less dramatic one, but one which necessitated a change in medication and that has unfortunately reset the clock on when I can seek clearance to drive again—it will be well into next year now.
Still, I’m exceptionally lucky by epilepsy standards. I have very infrequent, short seizure events which have predictable triggers—and they are seizures which should be easy to control with the right dose of a single anti-epileptic drug. There are 250,000 Australians who live with epilepsy, and most of their stories aren’t nearly so simple. Importantly—many of their stories look nothing like the stereotype—and that’s why public awareness about Australia’s most common neurological disorder is so important.
November is Epilepsy Awareness Month. For more information about epilepsy, see the Epilepsy Action Australia website.