Hawke’s Bay woman’s sudden-onset epilepsy: ‘I thought I was crazy’

Napier woman Antoinette was diagnosed with adult-onset epilepsy in 2021. Photo / Warren Buckland

Hawke’s Bay woman Antoinette was diagnosed with adult-onset epilepsy in her mid-40s after two years of confusing and upsetting seizures. She tells the Herald why it was a relief to find out she was epileptic.

Antoinette remembers brushing her teeth with her kids one night. The next moment, she was tucked up in bed, fully dressed with her shoes still on.

Other times she would look at her children and not know who they were, or arrive places without remembering the journey.

When these episodes began at the age of 42, shortly after having her youngest child in 2019, Antoinette was told she was likely suffering the effects of fatigue from having a baby.

“I was extremely tired anyway from having a baby. One of the first times I remember, somebody had brought me a coffee and I was sitting on the sofa. I don’t remember where my son was. Suddenly everyone was yelling at me and I was tipping coffee down myself,” said Antoinette, who wanted to be referred to only by her first name.

As the episodes continued, with varying levels of severity, she started to fear the worst. She started googling her symptoms, and was alarmed to find results suggesting causes such as early-onset dementia or brain tumours.

“My mental health was falling through the floor. All I could think about was, ‘If this is early dementia, how long will it take to progress? What can I do? What do I do to prepare for that?’”

Epilepsy had never occurred to her, as she only associated it with grand mal or tonic-clonic seizures, during which the affected person suffers violent muscle contractions and loss of consciousness. Antoinette had not heard of absence seizures, characterised by blanking out, or focal seizures, which can manifest in different ways.

“I get some absence seizures where if nothing changed around me, I might not even know that I had it.”

She remembers two instances while driving her kids to school where she had absence seizures, though she didn’t know that’s what they were at the time.

“What can happen during a seizure is you just stop. My foot must have come off the accelerator ... when I came to, my teenager was sitting next to me and was yelling, going, ‘Mum, what are you doing?!’ There was a massive backlog of traffic behind me.”

Antoinette started Googling her symptoms, which made her fear the worst. Photo / Warren Buckland

The second time she remembers suddenly realising she was drifting toward a line of parked cars.

During her focal seizures, she would maintain awareness of time passing, but would be confused and often unable to speak.

“I would be able to see people but not be able to respond to them. I couldn’t hear anything and just couldn’t do stuff ... I thought that I was crazy.”

On one occasion, Antoinette was in a large Zoom meeting and it was her turn to speak.

“I remember all these faces on the screen looking at me and I didn’t know who they were or how to respond to them.”

The final straw was a “really bad seizure” during which she was repeatedly coming in and out of awareness.

“It was very upsetting and I was by myself. [I thought], ‘This is not normal, there’s something completely wrong with me.’ I wanted it to go away.”

It took three visits to her GP across two years before she was diagnosed in mid-2021.

“I couldn’t articulate very well to my GP what I was experiencing. I would say, ‘I can’t remember where I put stuff’ ... My GP, of course, was looking at me and going, ‘The most likely explanation is you’re really tired.’ For most people, that would be the truth.”

On her third visit, Antoinette’s doctor recognised her symptoms as absence seizures and referred her to a neurologist.

She remembers the sense of relief she felt when her GP said it was likely epilepsy, rather than dementia or a tumour.

“I was so grateful to my GP,” she said.

Antoinette said the revelation highlighted the importance of being able to access primary healthcare instead of relying on “Dr Google”.

Professor Lynette Sadleir said it was common to mistake absence seizures in adults as something else. Photo / University of Otago

“Getting help, getting some clarity, is the best thing you can do. I can’t speak to other conditions but with epilepsy, with treatment and stuff, you can get it under control.”

With medication, Antoinette now does not get seizures.

Neurologist and University of Otago professor Lynette Sadlier said about 40 out of 100,000 people develop epilepsy in their 40s - around 0.04 per cent of people.

Epilepsy usually presented in childhood or early adulthood, or in people over 65, she said.

“Most epilepsies, particularly in children, are due to genetic changes in the DNA ... However, as you get older there is a bigger proportion of epilepsy caused by structural changes - due to things like strokes, infection, head injury, brain tumours etc, where something has negatively impacted the brain and this has resulted in epilepsy.”

Absence seizures were more common in the younger groups of people with epilepsy, but some people would continue having them as adults.

“It is less common to present with absence seizures as an adult and this would be a small proportion of adult-onset epilepsy.”

Though focal-impaired awareness seizures could also be confused with absence seizures, she said.

It was also common for these seizures to be dismissed as something else, “particularly as you get older”.

“The older you are, the more aware you can be during an absence seizure, so it might just appear like the person is briefly confused.”

Melissa Nightingale is a Wellington-based reporter who covers crime, justice and news in the capital. She joined the Herald in 2016 and has worked as a journalist for 10 years.