Kyndall McCallum from Bangor suffers from a debilitating migraine headache every single day.
The 32-year-old, who lives with her parents and can’t work because of the headaches, described the pain as “like somebody is hitting you over the head repeatedly with a hammer.”
“It is so painful, you can’t move. I can’t even lift my head off the pillow for fear of being sick. I can’t speak. It’s horrible and it’s so isolating as well,” she added.
Kyndall, who had her first migraine at the age of 12, said the pain escalates during the day.
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“My pain is maybe at a lower intensity in the morning, then throughout the day it will build in intensity and the associated symptoms will return. I feel sick, I’ll get visual auras, sometimes my speech goes funny, sometimes my left arm goes numb. Every single day involves lying down at some stage with an ice pack in a dark room and I just need a few hours to ride out the worst of it.”
Migraine is a common health condition, affecting around one in every five women and around one in every 15 men. They usually begin in early adulthood.
There are several types of migraine, including: migraine with aura – where there are specific warning signs just before the migraine begins, such as seeing flashing lights; migraine without aura – the most common type, where the migraine happens without the specific warning signs; and migraine aura without headache, also known as silent migraine – where an aura or other migraine symptoms are experienced, but a headache does not develop.
Some people have migraines frequently, up to several times a week. Other people only have a migraine occasionally. It’s possible for years to pass between migraine attack
A report from the Migraine Trust entitled ‘Dismissed for too long’ has revealed that Northern Ireland’s 250,000 people migraineurs (the name given to people with migraine) are being let down by the healthcare system.
From being dismissed as ‘just having a headache’, waiting years to be diagnosed, to lack of access to specialist care and new treatment, the report exposes a number of issues migraine patients are struggling to navigate.
The charity said this is leading to the worsening of people’s migraine, limiting their ability to carry out their lives with a huge impact on personal relationships, work and mental health. It is therefore calling for an urgent review of migraine healthcare in Northern Ireland.
Kyndall McCallum said: “Doctors are unaware that Migraine Disease can affect someone so severely, that it has a negative impact on their everyday life. For me, the head pain is daily and unrelenting. Lack of understanding and insight into this neurological disorder is what I find the most upsetting.”
Kyndall is unsurprised by the findings of the Migraine Trust report, which discovered most migraine patients in the province never see a headache specialist, including those with chronic migraine who are referred to neurologists who may not have an expertise in migraine.
Kyndall said: “For me to see a neurologist that had a particular interest in migraine took 10 years. My mum and dad took me to the doctors I don’t know how many times. At the start they said it must be puberty or stress at school.
“I’ve seen three different GPs, four different neurologists. My parents paid for me to go private when I was a teenager. Since then I’ve had brain scans, physio, acupuncture. There’s 10 preventative medications that I have tried, I’ve had Botox and tried all the alternative therapies.
“In 2018 I attended the National Hospital for Neurology and Neurosurgery in London. I had a surgical procedure called occipital nerve stimulation. I had a battery placed in my chest and it was connected to a device in the back of my head. Then I had to wait two years to see if that would work. I had to travel back and forward to London every 12 weeks to have it re-programmed. They came to a decision that because it wasn’t benefitting me, it would be removed.”
“I am currently prescribed Ajoyvy injections but I had to apply for funding and it took over six months to have access to it.”
The Migraine Trust said that problems in migraine healthcare have intensified over the last year as many people who are eligible for the new (and first ever drugs developed to prevent migraine) calcitonin gene-related peptide (CGRP) antibody migraine medication have struggled to access it, despite it being approved for use on the NHS.
Through Freedom of Information requests, the charity found access to these drugs was a postcode lottery. Only one Health Board in Northern Ireland out of five replied and stated that eligible patients could access CGRP treatment, compared to six out of seven in Wales and seven out of 14 in Scotland.
Kyndall said the other side of her daily migraines is the impact it has had on her mental health.
“It has ruined my life, although it’s just normal for me now. I was properly diagnosed with depression in 2006.”
The migraines have had a massive impact on her school life, friendships and career.
“I managed to get five GCSEs, but if I didn’t have migraine I definitely could have done better in school, stayed on and probably gone to university. Friends would just get fed up asking me if I wanted to do something after school because I knew if I did go my head would be really sore and it’s really hard to try and hide it.
“I did work as a retail manager, but it was with great difficulty and perseverance. But it became too much.”
The Migraine Trust found some patients in Northern Ireland are currently having to wait as long as 95 weeks to see a headache specialist, the longest wait time across the four UK nations.
Slow or no diagnosis is also an issue. People with migraine are often only diagnosed several years after starting to have migraine attacks.
Rob Music, chief executive of The Migraine Trust said:“Despite the widespread and wide-ranging impacts of migraine on Northern Ireland’s population, this report has highlighted that migraine is largely absent from NHS plans or local public health strategies, receives very little funding for research, and access to specialist care is patchy and inconsistent across the Northern Ireland and the rest of the UK. This must change.
“Our support services at The Migraine Trust are contacted daily from people who have had to fight to be diagnosed correctly, who have to wait months to see a specialist; or who are unable to access the NICE-approved medication they are eligible for.”
The charity said everyone diagnosed with migraine should receive an individualised care plan, developed closely with them. Regardless of whether medication is prescribed, the individual should have their care plan regularly reviewed at an interval decided with their doctor.
Kyndall feels she has been let down by the health service.
“There’s no individual treatment plan at all. You are put on a tablet and that’s it.”
The Migraine Trust would like to see GPs undertake up-to-date training in migraine management, as well as adequate access to secondary and tertiary specialist.
Northern Ireland’s department of health should support the recruitment of additional headache specialists and consultant neurologists to bring Northern Ireland in line with other European countries.
Every local health body in Northern Ireland should appoint a migraine/headache Lead to champion migraine care, share guidelines among colleagues, and lead needs assessments, service development and health care professional education across the area
It said public awareness campaigns should be developed in Northern Ireland to improve understanding of the range of migraine symptoms, as well as to reduce the stigma associated with migraine.
“Taking action now to improve migraine care in Northern Ireland will have far-reaching benefits, not only for the quality of life for the hundreds of thousands of people who experience migraine but also in reducing workdays lost to illness and lessening pressures on A&E departments,” said Rob Music.
“We know we could save many more of the 43 million workdays that are lost due to migraine illness across the UK each year and avoid most of the 16,500 emergency admissions for headaches and migraine attacks if we give people better care. Change is urgently needed for the sake of the 10 million people in the UK living with migraine.”