I’ve had a headache for nine years, non stop

Mark Nother will never forget the afternoon of Friday, September 26th, 2008. At 2.40pm he was struck out of the blue by a severe headache which has never left him since – not even for a second.

Now 25, Nother was 16 and in transition year when he began to feel nauseous and dizzy as he came out of woodwork class. He passed out for a few seconds and woke with a headache, which he has had since that day.

It took nearly two years before Nother was diagnosed with New Daily Persistent Headache (NDPH), a relatively rare chronic pain condition for which there is no known cause, no effective treatment and currently no real relief.

NDPH is a type of persistent headache that starts suddenly and happens on a daily basis with migraine or tension-like features. It occurs every day after it starts, and very soon becomes unremitting, often occurring in children without prior history of headaches. It is estimated that it affects 2 to 4 per cent of adolescent females and up to 2 per cent of adolescent males.

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“Like a lot of people with chronic pain, initially nobody knew what was going on and I felt so scared, alone and weak. At 16, my worries had been around girls, sports and exams, not about my health,” says Nother. When tests and scans ruled out a brain tumour or bleed on the brain, he – and his family – were relieved, but they still had no idea what was causing his headache. None of the medication he was prescribed gave him any relief from the pain, not even a daily steroid IV drip.

Despite being in constant pain, he managed to sit his Leaving Cert in Galway and get into the University of Limerick, where he studied politics.

“I got very depressed around Christmas 2008 when I realised the headache was not going away,” he says. “I had suicidal thoughts, it was a very dark time. I was lucky my family and close friends always believed me, I don’t know what would have happened if I didn’t have that support.” Nother felt badly scarred by the dismissive attitude of one neurologist in particular. He says there is a need for the medical profession to understand that chronic-pain patients are the experts on their own conditions.

In 2011, he contacted Dr Martin Ruttledge, a neurologist at the Hermitage Clinic in Dublin, an expert in NDPH, who finally diagnosed him. He describes his pain as a constant tension headache from his temples over his ears on both sides of his head. He also suffers from random migraine attacks, which leave him bedbound and unable to eat or even speak. "None of the treatments I tried ever worked. The worst thing was the false hope I was constantly building up each time, it became crushing, and about five years ago, I stopped looking for treatments and changed my mindset. I try to manage my health now. If I am well rested, eat well, exercise and keep myself in good health, it makes the pain a lot easier to deal with."

Nother, who graduated from college in January and recently started work in Dublin in the Civil Service, finds being busy helps distract him from the pain and so he throws himself into work. He took an extra year to graduate and pays tribute to Dr Chris McInerney, of the department of politics and public administration at UL, for the kindness and empathy he showed him.

Last year, in an effort to do something positive and encouraged by his girlfriend who has been "a rock" over the years, Nother took on the challenge of raising €5,000 for Chronic Pain Ireland by completing an endurance event every month for a year. He has reached more than €3,500 and his target date is November 1st, 2017. For details of his campaign, see idonate.ie

“Living with chronic pain can cripple your self-confidence,” says Nother, “lead to depression, and just make everyday tasks nigh-on impossible. Communication is so important. Becoming a lot more open about my condition has been key to helping me manage it.”

Pain and how to get help

New research from Chronic Pain Ireland's "mypainfeelslike . . ." campaign shows that just more than half of people living with persistent or chronic pain in Ireland discuss their pain with a healthcare professional once a year or more, and one in five never do. This national campaign aims to raise awareness and support patients when communicating with healthcare professionals.

It is estimated that some 1.65 million people in Ireland have pain, with 13 per cent living with pain for 10 years or more. According to this new research, headaches (55 per cent) and lower back pain (51 per cent) are the most common.

"Persistent pain has a serious impact on people's lives and wellbeing," says Dr Paul Murphy, consultant in pain medicine in St Vincent's Hospital, Dublin. "Engaging in an active management plan can help patients reduce pain symptoms, improve mood and increase function. It is also crucial that people comply with any treatment prescribed by their care team – be it medication, exercises or other treatment options like mindfulness and relaxation practices."