Nicole's epilepsy story - Epilepsy Queensland - share your story

Nicole's Epilepsy Story

Nicole first presented with seizures in 2003 and 2016 after she experienced strokes to her right parieto-occipital region of the brain and three areas of her frontal lobes, respectively.

Despite this, Nicole was not actually diagnosed with epilepsy until after her second stroke in 2016. She had been taking anti-seizure medication (Tegretol) and had been seizure-free since 2003, after initial tonic-clonic and focal aware seizures.

“My neurologist said that as I had “breakthrough” seizures and continued to do so for a few days after presenting, a diagnosis of epilepsy could be confirmed.”

Nicole describes the multiple seizures she experienced in 2016:

“It started as upper limb – right arm rigidness with uncontrollable movement seizures which grew to tonic-clonic seizures. Two of these were quite severe, and the second severe one lasted as long as 6 minutes. Several attempts with medication were made and the nurses called a code blue. I was then sent to ICU for observation.”

A Passionate Advocate

Because of these experiences, seizure first aid education and stroke awareness is important to Nicole.

I’ve always put up seizure awareness / seizure first aid posters in the workplaces I have been in. It’s important as anyone, at any time, can have a seizure.  It may not be related to just people with epilepsy, it can be a symptom / occurrence of another medical condition, as in my case, stroke. “

Nicole would also like to see more epilepsy stories in mainstream media:

“More epilepsy narratives in our TV shows and ads are needed. Having sports heroes, actors etc tell their stories would help dispel stigma and misconceptions such as that a person who has epilepsy is violent, can’t hold down a job, cannot drive, is disabled, is contagious etc.”


The Impacts of Medication

Nicole would like people to understand that seizures can be (such is her case) “physically, mentally, and emotionally painful,” and  that side effects of anti-seizure medications can adversely impact one’s life:

“Medications can do a myriad of things to you- anxiety, depression, mood swings, lethargy, brain fog, just to name a few.  I’m currently reducing my Keppra medication and slowly introducing Lamitan.

Unfortunately, due to Keppra and residual effects from my stroke, I am having what is commonly known as Keppra rage.”

Over the past few years, Nicole says her mental state  has been triggered:

 “I have slowly progressed to a state I no longer can put up with or hide.”

Nicole retains hope that through finding the right balance of anti-seizure medication: “I should regain my clarity back and return to the old me.”

Epilepsy Queensland