Tackling migraines: ‘The new drug has been a miracle for me. But I live in fear of the attacks coming back’

“The pain is intense. It is unbearable. It can be very scary when you don’t know what it is,” says Susan Doyle.

The 53-year-old mother of three, from Clondalkin, Dublin, cannot recall exactly when debilitating migraines took over her life. “I think I always had them,” she says.

“But I would get an attack maybe every two years, which would last up to six weeks. I would be absolutely incapacitated. I was so sick I’d be vomiting. It didn’t matter what painkillers I took, nothing would work.

“It is a very sharp, throbbing pain in the head. My eyesight would go, it would feel fuzzy like someone vigorously shook my head. I would be all at sea, not familiar with my surroundings. My hearing goes – it is like being underwater trying to hear conversations.”

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Susan often ended up in A&E so bad were the attacks. “I thought I was having a brain haemorrhage. I would be telling the doctors to do another scan, they can’t be right. It is very hard to convince yourself there isn’t something very wrong.”

Every part of her life was profoundly impacted – her role as a mother, her job, her social life. The only relief was lying down in a dark, quiet room with a cold flannel over her face.

Susan’s migraines – a neurological condition for which new drugs are offering great hope – worsened after the death of her son Robert, by suicide, in 2011. What were two-yearly episodes became a weekly suffering.

[ One man and his 10-month migraine: ‘I began to disappear’ ]

“It was almost daily. They were getting out of control,” she says.

Having seen countless medics, Susan was eventually referred to a neurological specialist at St James’s Hospital “who took me under her wing”.

There was some “trial and error” in using different medications, until she was offered a calcitonin gene-related peptide (CGRP) drug, approved for chronic migraine under prescription in Ireland only last October.

“It was a game changer; it has given me back my life,” says Susan. “It is like night and day, going from being incapacitated, bed ridden, not being able to drive, socialise or have a life. I feel now this is what life is all about, the fog has lifted.”

Susan is far from alone in her experience. It is estimated that 10-12 per cent of the Irish population suffer migraines, with varying degrees of severity. The condition is three times more common in women than men.

Fluctuating hormonal levels are believed to play a role in its prevalence among women, with studies showing heightened vulnerability to attacks during menstruation and ovulation.

Dr Eddie O’Sullivan, clinical director of Cork University Hospital’s migraine clinic, said it was often people aged from their mid-20s up to mid-50s – “during the most challenging and productive time in their lives” – who are most susceptible.

“Its effect can vary from one patient to another, but it can be a progressive disorder,” he says.

“The average patient referred to us by their GP gets two or three migraine attacks a month. For up to 10 per cent of patients that can progress to more than 15 a month.

“Around half of those days may be debilitating, a throbbing headache, an intolerance to light, nausea – it has a huge impact: on their work, their personal relationships as well as on the individual themselves.

“They can’t function and this has a knock-on effect on others, including family members.”

Dr O’Sullivan is quick to dispel any suggestion that a migraine is simply a bad headache.

“It is a neurological disorder,” he says. “We know that neurochemicals or neuropeptides are released in the sensory nerves in blood vessels to the brain and the coverings of the brain.

“That sets up an inflammatory reaction and stimulates painful receptors and painful pathways to the brain.”

Its prevalence is also “fairly high” in population terms “when compared to other common conditions, such as asthma and diabetes, for example”.

“I think there has been a lot of misconception around migraine in Ireland and patients often suffer in silence, because their pain is misunderstood or dismissed as just being headache.”

One approach to treatment is to look at triggers but only about a fifth of patients can identify them. Common triggers include menstruation, ovulation and dietary factors such as cheese, chocolate, food additives, alcohol and caffeine.

Stress, too, plays a role along with lack of sleep and environmental factors including bright lights and noise.

Painkillers, beta-blockers, antidepressants and anticonvulsants have traditionally been used to help treat symptoms.

But the arrival of new acute preventative drugs and a growing awareness of the condition – helped by the Migraine Ireland, which has just launched Migraine Awareness Week – present huge advances for sufferers.

CGRP drugs “target the specific mechanism of migraine and have been shown to be very effective”, says Dr O’Sullivan.

But Hazel Breen, of the Migraine Association of Ireland (MAI), says even medics may not be fully informed of the scale of the condition.

“We are trying to remove the common perception that it is just a headache,” she says.

“There are numerous different types of migraine, varied triggers, and many symptoms before, during and after a migraine attack that many people and healthcare professionals are unaware of.”

For Susan, classes and education offered by MAI “played a vital role in me accepting my condition”.

“You can get very frustrated with yourself, asking yourself why am I not a normal person, why can’t I do this, why can’t I do that, why can’t I go to work today? The education has been fantastic.”

Susan has also realised the toll the condition took on her mental health.

“I have been on the new drug for a year now, and it has been a miracle for me,” she says. “But I do live in fear of the attacks coming back.”