Morgan Reid keeps a diary – but rather than a record of her thoughts, her journal documents her seizures.
Its entries – “chipped tooth”, “black eye”, and “hospital” paint a grim timeline of what the 26-year-old has suffered as a result of her epilepsy since she was diagnosed as a teen.
“I just wake up basically and I’m vomiting. And that’s when I know I’ve had a seizure,” she said.
Like any young person, it’s freedom she yearns for the most.
“I can’t drive, I usually have to go out with people, people have to pick me up, or I Uber,” she said.
Keeping the journal picked up a pattern in Reid’s seizures- many happened during or around the time of her period.
This is exactly what University of Auckland research fellow Dr Rachel Sumner wants to learn more about.
She’s been awarded $264,000 by the Auckland Medical Research Foundation to find out how the menstrual cycle and its associated hormones can make epileptic seizures more severe or happen more often.
She uses equipment like EEG – which measures electrical activity in the brain and takes blood samples.
“It’s really well-documented people experience changes in their mood or changes in their seizures,” she said.
“But outside of the women who are affected, some people don’t understand. And even clinicians weren’t taught.”
The hormone progesterone has an anti-convulsant effect and this actually drops off before and during your period, meaning estrogen becomes dominant. And this could be why many women have an increase in seizures during and around their period.
“If we could take those away with a specific treatment, we would have women back out in their life with successfully treated seizures,” Dr Sumner said.
For Reid, just knowing the research is underway is a huge relief.