Nightmares, narcolepsy and sudden weakness turn Mary's life upside down after swine flu vaccination
On her short car journey to work, Mary Minchin often had to stop her car three or four times and pace up and down on the road to fight a sudden desire to sleep.
On other days on her drive home, she would ‘get lost’ and end up driving in the wrong direction.
“At first, I thought I was just exhausted but soon I felt something was very wrong,” she said.
Sleep at night brought her no solace as terrible nightmares and hallucinations tormented her. During her waking hours, seizures would cause her to lose control of her body and she would fall down, unable to move though still fully conscious.
Mary Minchin was 57 when her life was “turned upside down”.
She told the Sunday Independent she is one of around 100 people in Ireland who suffered serious health problems after being inoculated with the swine flu vaccine, Pandemrix, around a decade ago.
These were ‘the unlucky ones’ out of the large number of people who received the vaccine with no ill effects.
Around 80pc of suspected victims of Pandemrix were children and adolescents.
Many are afflicted with narcolepsy — a long-term neurological disorder which causes sufferers to fall asleep suddenly as well as cataplexy, sudden muscle weakness causing people to collapse while remaining conscious, typically triggered by emotions such as laughing, crying, or fear.
Mary’s devastating symptoms of narcolepsy and cataplexy began in the weeks after she was given the Pandemrix vaccine in January 2010. She was diagnosed with these two linked conditions by a medical consultant a few months later.
Pandemrix was later withdrawn from use after studies showed higher than normal rates of adverse reactions, including potential links to narcolepsy.
“I am pleading with Health Minister Simon Harris, the Government, and the HSE to stop resisting the efforts of victims who are trying to get funds in compensation to pay for the care we need,” said Mary.
Like many others who testify that they were afflicted by devastating side-effects, she is suing the State, the Minister, and the makers of the vaccine GlaxoSmithKline (GSK).
Mary wants to raise public awareness of these medical conditions and what happened to those who had adverse reactions to Pandemrix.
Her son Richard (38) said: “This condition has destroyed my mother’s life and has had a profound impact on all of us within the family in many different ways. I sympathise with all the other families that have fallen victim to this.”
Mary and Richard said they acknowledge the importance of health vaccination programmes generally but there must be justice to provide care when harm is inflicted.
Mary (65) lives on her family farm near Leighlinbridge, Co Carlow. A mother-of-four, she had worked for the HSE and the Irish Wheelchair Association by providing personal care for ill people in their own homes.
She did the job from 2004, until forced by her illness to quit in 2010.
Mary said she was strongly advised by the HSE that she should get the swine flu vaccine because she was a health worker visiting vulnerable patients, but she was not warned of side effects, she said.
None of her colleagues suffered the devastating side effects that struck Mary.
A normally healthy woman, who was happy to volunteer as secretary of the County Carlow Irish Farmers’ Association, her life deteriorated dramatically.
As time passed after receiving the vaccine, Mary began to feel “utterly exhausted”. Then, a couple of weeks later, Mary was dining in a Dublin restaurant when she suddenly fell fast asleep. A woman at the table told her son Richard: “We mustn’t be very good company. Your mother has fallen asleep.”
But Mary soon began to be overwhelmed by sleep while at work, during social occasions, while driving or at home.
On one occasion, she was taking notes at a work meeting but was embarrassed to discover she had written nothing only indecipherable “scribbles”.
At night, she was beset by hallucinations and terrifying nightmares.
Her husband John, who died two years ago, was very upset by her night distress. She still suffers nightmares.
With her diagnosis in 2010, she had to give up work and give up driving after narcolepsy severely impaired her abilities. She was given an invalidity pension and a medical card.
She has collapsed on a number of occasions while out shopping, resulting in ambulances being called.
At home, when she feels she is going to be overwhelmed by tiredness or weakness, she will swiftly lie down on a couch.
Although she is on several medications, she cannot be left alone for long periods. Her four adult children share in the care of their mother. She can no longer socialise because of the likelihood of her collapsing.
Her solicitor, Lucan-based Elizabeth Howard, told this newspaper her lawsuit seeks to address the terrible suffering being endured by Mary.
The lawyer said the State should introduce a ‘no-fault’ tribunal to allow payments to fund care of the victims. The State should end its adversarial approach which forces victims to seek to prove negligence on the part of the State, she said.
The State indemnified the pharmaceutical company against legal actions as part of routine preparations before the vaccines were distributed.
Ms Howard said she will wait for the outcome of legal proceedings being taken by another law firm, Augustus Cullen Law, on behalf of one of its clients with narcolepsy, which is due to begin in the High Court next October.
A spokesman for Augustus Cullen Law said the State and the vaccine makers continue to deny liability, and even deny that the vaccine increased the chance of developing narcolepsy, despite such a link being acknowledged in the scientific and medical community.
In 2015, a British court awarded £120,000 to a 12-year-old boy after ruling he was left disabled by narcolepsy caused by Pandemrix.
An Irish group named SOUND — ‘Sufferers of Unique Narcolepsy Disorder’ — said the State is “morally bound” to provide children and adults damaged by Pandemrix with lifelong care and support.
Orexin/hypocretin in the human brain acts as the regulator of sleep, wakefulness and appetite.
SOUND claimed Pandemrix caused the immune system of sufferers to mistake orexin/hypocretin in the brain for the swine flu virus, causing the hypocretin to be “decimated”.