A year and a half ago, an Irish study found that young people who had taken the swine flu vaccination Pandemrix, had a 13-fold increase in the chances of developing narcolepsy.
It’s a disorder that causes overwhelming daytime sleepiness, with sufferers liable to fall asleep at inappropriate times and places.
However, the vaccine did also affect a number of adults.
Valerie is a mother of one who has only be diagnosed with H1N1 narcolepsy in the last few months, three and a half years since she got the vaccination.
“We got a letter to the house from the HSE requesting that we go to our local centre to get it because my daughter was so young at the time, she was deemed one of the ‘at risk’ groups. So we were advised that based on her age, we should get it to protect her.”
Valerie’s reaction to Pandemrix was instant: “Within a couple of minutes, I became unresponsive, was staring off into space, lost quite a lot of power to my arms and legs, was confused, and my blood pressure was going up and down.”
Little did she know that that day was the start of a long battle to get a diagnosis.
The narcolepsy really took its toll on her: “The word tired doesn’t do it justice. I know what it’s like to be tired before narcolepsy... This was systemic, painful, nauseating. Your body is screaming for sleep. But you can’t ever fall properly asleep”
“Even when you do fall asleep, it’s built with hallucinations, nightmares, sensations and you will never ever wake up refreshed even after 14 hours. “
She spoke to Pat today about how doctors didn’t know what was causing her narcolepsy and cataplexy, and she ended up on no less than four medications in an effort to treat her symptoms.
After three and a half years of treatments, both medical and psychological, Valerie said she started to feel like she was “losing it”. Her doctors kept showing her clear scans and telling her nothing was wrong.
Eventually, she convinced a GP to refer her to a sleep clinic because she believed she was showing similar symptoms to the children whose cases had been highlighted by SOUND – Sufferers of Unique Narcolepsy Disorder.
A trip to the Mater Private Sleep Clinic confirmed her diagnosis in the last few months.
Valerie spoke very openly and frankly about her experiences with Pat on today's show.
