Epilepsy is a neurological condition that can affect people from all backgrounds. Children make up 30 per cent of new cases, though seizures eventually disappear in about half of child cases. Nicole Crescenzi, now an associate producer of current affairs at CBC Radio in Victoria, started having auras and partial seizures at around age 15.
“I saw several specialists, but I think people just brushed it off.”
Mild epileptic episodes continued during Nicole’s undergraduate years studying communications at Ottawa’s Carleton University.
“I would faint and when I revived, I couldn’t articulate words or remember what I had studied. It was very disruptive. I got quite emotional and confused. It was difficult in a university program where there was already stress put on to communicate clearly.”
Nicole had big plans to go to Japan to teach English after graduation, but she was forced to abandon the trip when a few weeks after graduating she woke up in the hospital with a bad headache and a swollen tongue.
“I was told I had had a tonic/clonic seizure at home.”
Tonic/clonic seizures, which used to be called “grand mal” seizures, are neurological events that many people wrongly assume to define epilepsy as a whole. Such seizures are generalized seizures that involve neurons from bilateral diffuse brain regions firing in a synchronous and uncontrollable pattern.
During the initial tonic phase, which lasts about a minute, the person loses consciousness, muscles tighten and limbs stiffen, breathing becomes difficult and the face might turn blue. Myths still surround tonic seizures. The most prominent myth is that a person can swallow the tongue, which simply cannot happen.
The clonic phase, which might or might not follow a tonic seizure, is characterized by muscular spasms and limbs jerking that usually last for no more than a minute. Afterwards, the person often remains unconscious for a short time. Once awake, the person can feel tired and confused.
Her tonic/clonic seizure compelled Nicole to change her lifestyle.
“My driver’s licence was revoked, which was frustrating, and I couldn’t drink alcohol because I was taking medication, which made life a bit strained in social situations.”
Brain scans revealed that Nicole had a benign growth in her brain known as a cavernoma, which are clusters of blood vessels with an abnormal wall. These vessels are not cancerous---they cannot spread to other parts of the body. But cavernomas often bleed and can cause neurological symptoms, including seizures. The cavernoma was likely the cause of Nicole’s epileptic events since her teen years. When a neurologist in Nicole’s home town of Victoria saw from her magnetic resonance scan that her cavernoma was starting to bleed, he highly recommended that she have surgery at The Neuro.
“He knew that it had the proper physicians and technology,” says Nicole.
With Dr. Kobayashi as her attending neurologist, Nicole spent 11 days at The Neuro’s epilepsy monitoring unit where she was weaned off her medication with the aim of provoking a seizure to record.
“The best part was that I was able to talk to other epilepsy patients there,” she says. “That was the first time that I ever spoke to anyone else with epilepsy. We had different ages and backgrounds, and sat around and talked about our different kinds of seizures. We realized that we weren’t alone. It felt like a weight was lifted off my chest.”
Six months after Nicole’s stay, Dr. Hall performed the surgery at The Neuro.
“I was pretty calm that morning, but while I was waiting on the gurney outside the operating room, I became very scared and started to cry,” recalls Nicole. “The nurses and doctors held my hand and got me tissues and told me it would be okay. I felt very supported.”
Five months after surgery, Nicole married her fiancé. Some of her fellow patients from The Neuro, now her good friends, were invited to the wedding.
“I haven’t had a seizure since surgery and I slowly weaned off all medication. I haven’t used any since September,” says Nicole. “Dr. Hall says that there’s probably no need for further surgery. He says that if I need to, I can email him questions. I really appreciate that.”
“I have my driver’s licence back. I can’t even really describe how different my life is.
To read part one of Overcoming Epilepsy, featuring epilepsy patient Tommy Hains, click here.