Caring for children and young people with migraines

This Migraine Awareness Week we speak to Stacey and Jo to find out about the work of the Headache Clinic at Great Ormond Street Hospital (GOSH) and how migraines and headache conditions can impact children and young people.

Stacey (right) is a Neurology Clinical Nurse Specialist (CNS) working in the Headache Clinic. Her role sees her support families and parents, acting as a port of call if they have any queries or need medication changes between appointments. She also liaises with schools and paediatricians to educate them about a child’s headache condition so that they can better support young people affected.

Jo is a Trainee Advanced Nurse Practitioner for Neurology and the Headache Clinic. Adopting some of the same duties as Stacey, additionally Jo sees patients in follow up clinics, administers specific headache treatments, provides telephone consultations and supports the ward patients.

Stacey explains the remit of the Headache Clinic at GOSH: “We have about 600 patients in our clinic, and we saw 120 new patients last year alone. One in seven people have migraine, and we know that one in five will experience symptoms before their fifth birthday – so that’s a huge bulk of the population.”

Jo adds: “We are the only headache clinic exclusively for paediatric patients. We tend to see patients with severe or complex headache conditions. The youngest patient we’ve seen was three years old and the cohort ranges in age, right up to transition just before they turn 18. Symptoms that we see in young children can be quite different to the adolescents, and for long term patients we tend to see symptoms change and evolve over time. For the younger children, we have to try to interpret as best we can, as they may use their own words or actions to describe what they are feeling - we often use drawing and play to tease out the symptoms.”

The Headache Clinic takes a multidisciplinary approach to its service, providing more than just medical care: “We have two doctors, two nurses and two clinical psychologists. We can offer preventive and acute treatments, but we know that they will not cure the condition and at most will only help improve symptoms by 50%, so our psychologists do a lot of work in helping children and young people to accept and function with their condition.

“Helping the young people to deal with their chronic condition day-to-day is key, as it can be very disabling and tricky for them. We can give medicines but it’s equally, if not more, important that they learn strategies and management techniques,” explains Stacey.

100,000 people are absent from work or school every day as a result of migraines, contributing to 25 million lost work or school days every year. Both stress that migraine is a disabling condition and not something that adults or young people should feel that they should just ‘get on with’:

“They should go to their GP initially and children and young people should be seen by a paediatrician if their migraine is impacting on their ability to function as expected. We have a lot of people come to see us, who are missing school and are worried that they will be unable to reach their potential if they don’t get the correct diagnosis and treatment for migraine,” Jo says.

Stacey adds: “People think of migraine as just as headache, but it’s a brain condition due to all the other symptoms that go along with it - dizziness, visual disturbances, nausea and some rarer migraines can cause limb and facial weakness too.

“I think it’s important to spread awareness of the strategies that are really easy to implement but can have a big impact. People often underplay their symptoms and struggle on with it but there are some simple things that can be done. Having a regular routine is a key strategy – regular wake up, sleep and mealtimes can be really helpful to regulate your migraine.”

Jo explains some of the research areas the clinic has been involved with related to migraines and headache conditions, including being involved in a new clinical trial: “We have an upcoming trial for an injection that has been designed specifically for the treatment of migraine. The treatment is given as a once a month injection and it has had very positive outcomes in the adult population. This will be the first paediatric trial for a migraine specific preventive medication, where treatment has been developed following research investigating what causes migraine. In the past we have used preventive medications that were originally designed for another purpose and then found to help migraine sufferers by chance.

“There is also a lot of research going on outside of GOSH into the pathophysiology of migraine – how migraine is initiated and perpetuated and where in the brain the various symptoms generate from. We know now that there are different areas of the brain and chemicals involved in causing the condition, making it a complex condition.”

Both Stacey and Jo are keen to issue a word of warning to adults and young people alike who are experiencing migraines when it comes to using relieving medication:

“If you use any treatments such as Paracetamol, Ibuprofen or a Triptan for more than two days a week each they can actually increase headache and make headache worse,” explains Stacey.

Jo adds: “It’s called Medication Overuse Headache. It’s a secondary headache condition caused by the acute medicine being taken too often, causing a rebound headache. Sticking to a two-day-rule, e.g. stick to two days of each medication a week, no more; you can stop that additional headache which can be hugely disabling.”

Stacey concludes “Your routine and lifestyle is something you can look to regulate and alter - together those two things can make a huge difference.”