Elaine's Story

(Transcribed from an article that appeared in the Irish Independent on April 15, 2014)

As a result, the mother of two spends much of her day napping, and must resort to stimulants to wake her up – and medication at night to help her sleep.

Her husband and sons take on a large share of the housework, she says. “The most painful aspect of narcolepsy for me is the effect it has on my family and friends. My husband is tremendous support,” she says. “He does the chores in the evening with the help of our two sons. My energy is limited to cooking meals, light chores and weekly shopping,” says the 40-year-old from Ballina, Co Mayo. “My limited energy compromises everything. I’m existing, not living,” says Elaine, whose earliest narcolepsy memory is of experiencing terrifying but highly realistic nightmares around the age of 12. These, as she later discovered, were a common symptom of her condition. Because they “intertwine with reality”, she says, the nightmares felt very real and were absolutely terrifying.

As she grew up, Elaine also endured regular bouts of sleep paralysis. “You’d lie there fully conscious, unable to move or use your voice. This can last for minutes, maybe even longer,” she says. Another symptom, excessive daytime sleepiness, or EDS, was also starting to take effect on her daily life. She had a constant urge to sleep – she napped up to three times a day – and her mood swings, she recalls, “were terrible”. “I just wanted to stay in my bedroom all the time and sleep. My mother took me to the doctor’s many times. I was given a tonic, told it was pre-teen blues and that basically I was perfectly healthy, just lazy.”

At 14, Elaine had her first cataplexy attack – a sudden loss of muscle tone, often triggered by emotions like laughter or annoyance. It can manifest in anything from slurred speech to eye-fluttering, jaw- slackening, head-dropping, knee-buckling or to a loosened grip: “After getting angry with my brother as I was sweeping the kitchen floor, my knees buckled and I slid down the brush to the floor,” she recalls. Again she was brought to the doctor, but it was put down to attention-seeking. “I thought I was going crazy. I stayed in my room a lot of the time, getting up to eat.” Her family presumed she was studying – but in fact, because of the chronic insomnia linked to her condition, Elaine was often napping. Often her study was done late at night between 10pm and 3am. She also napped at lunchtime and would go to bed straight after school, she recalls.

She managed – but after her Leaving Certificate year, she found it difficult to manage college life: “I began missing morning lectures and slept through lunch lectures,” she recalls, adding however that she again took advantage of her regular insomnia to study. It didn’t work out, however, and she eventually left college and found a job in a factory which, because it was physically demanding, helped her to stay awake .

Elaine was 22 before a TV programme on sleep disorders helped her connect the dots. She was referred to a sleep specialist who diagnosed narcolepsy and prescribed medication. The medication meant that Elaine’s EDS improved enough to hold down a job. After marriage at 24 and the birth of her first child, her condition forced her to give up her job. “I needed the little energy I had to look after my son,” she recalls.

There are other problems, however: “Narcolepsy is not recognised in Ireland as a lifetime illness, even though there is no cure and it affects your quality of life comparable to epilepsy and Parkinson’s disease. “I am not entitled to a medical card,” she says, adding that she is on the Drugs Payment Scheme for over 16 years, under which she contributes €144 a month towards the cost of her medication.

Elaine Armstrong