Young NI man recalls the agony of childhood migraines

Jake Kelly from Belfast started experiencing migraine headaches when he was just 10-years-old.

Now, 27, and working as a digital officer for the Migraine Trust, Jake recalls how hard it was being a child and living with migraine.

“When I was younger and having the stress of preparing for,and then doing, the then 11 Plus exams, did lead to me having a lot more migraine attacks.

“It was hard to look forward to events or plan for future events as I would be worried about cancelling plans or being stressed with organising.

“When I would tell teachers or other adults I had migraine there were definitely faces pulled making me believe I was exaggerating the throbbing pain I was experiencing – this was still the case in secondary school.

“Even now when I am in my late twenties I still feel like people do no understand that migraine is not just a headache.”

Migraine is a painful and debilitating condition that affects one in 10 children, which is almost 40,000 children in Northern Ireland. Despite being a painful and common condition, a new report has revealed that schools don’t have the information, resources and processes to help children in school with their migraine. The research also showed that children often feel left out of their own healthcare and think that their care is poor. The report, Dismissed for too long: The impact of migraine on children and young people, has been published by the UK’s leading migraine charity The Migraine Trust.

Rob Music, chief executive of The Migraine Trust said: “The research by The Migraine Trust shines a light on the hidden disability that migraine has on children and young people. There is a huge amount of work to be done so that children receive timely migraine diagnosis, followed by a Migraine Management Plan incorporating a holistic, multi-disciplinary approach incorporating physical, emotional and psychological health and education. Such an approach is key in achieving the best education and health outcomes in this group of patients. With advances in treatment, there is a now a need to move at pace at the national level to empower children, young people and their families, to receive a standard level of care across the nations that is fit for now and the future.”

Jake said his migraine started with the “typical pounding head pain associated with migraine attacks”, although later on he discovered that the stomach pain he had been having years before was abdominal migraine.

“My migraine attacks usually start with neck pain and then progress into a throbbing headache on one side, I will often feel nauseous and sensitive to lights, even the dimmest of lights can make me feel worse. My attacks can last for two to four days, after the throbbing headache I tend to be really fatigued and struggle with brain fog.”

Jake said he was lucky in that he was taken seriously by his GP and was quickly referred to a paediatric neurologist at the Royal Hospital, where he would go every few months with his headache diary.

“After tests and scans I was offered various preventative and acute treatment options for my migraine.

“Treatment for migraine does involve a lot of trial and error with some medications needing to taken for months to see any potential benefit. It has taken a while but I feel like my current treatment has helped a lot.”

When he was younger Jake said he would avoid all the food and drink that were often labelled as triggers such as chocolate and cheese but he would still have the attacks.

“Now I know that a disturbed night’s sleep or even sleeping in on a weekend can trigger a migraine attack. Stress for me is also a trigger with an attack normally following a stressful period.

“These days I would get an attack every six to eight weeks. I have found as I got older and have been able to manage them better they have decreased in frequency from one a week when I was first diagnosed.”

He added: “Living with migraine has been a journey, it does involve a lot of educating myself on what I can do to help myself and knowing what can trigger an attack and probably the hardest thing is guilt- that can come from not looking after myself or cancelling plans with others. Knowing that I have not caused an attack to happen and that the attack came, so therefore it can go, does help me, and educating those around me also helps with the guilt of cancelling plans. But since my diagnosis I have been able to go on and get my Bachelor’s Degree and then went on to get my Master’s.”

And his advise to parents or guardians is be supportive.

“Remind your child that it is not their fault that they have migraine. When talking to your child about their migraine do not be dismissive. Listen to your child about how they are feeling and do not downplay their symptoms or dismiss how they feel.”

For more information visit: https://migrainetrust.org/migraine-in-children-and-young-people/how-you-can-help-your-child-manage-their-migraine/