NI-Mrs. Kyndall McCallum about living with migraines every single day of her life

One in five women, like Kyndall McCallum, has migraines

Kyndall McCallum of Bangor suffers from crippling migraine headaches every day.

The 32-year-old, who lives with her parents and cannot work because of the headache, described the pain as “like someone hitting you on the head with a hammer over and over again”.

“It’s so painful that you can’t move. I can’t even lift my head from the pillow for fear of getting sick. I can not speak. It’s awful and it’s so isolating too, ”she added.

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Kyndall, who had her first migraine at age 12, said the pain escalated as the day progressed.

“My pain may be less intense in the morning, then it gets worse as the day goes on and the associated symptoms return. I’m sick, I get visual auras, sometimes my speech gets weird, sometimes my left arm goes numb. Every single day at some point you lie in a dark room with an ice pack and I only need a few hours to get through the worst. “

Migraine is a common disease affecting around one in five women and one in every 15 men. They usually start in early adulthood.

There are different types of migraines, including: Migraines with aura – where there are certain warning signs just before the migraine starts, such as: B. seeing flashing lights; Migraines without aura – the most common form of migraines without the specific warning signs; and a headache-free migraine aura, also known as a silent migraine – when an aura or other migraine symptoms occur but a headache does not develop.

Some people have migraines frequently, up to several times a week. Other people only have migraines occasionally. It is possible that years may pass between migraines

A report by the Migraine Trust titled “Discharged Too Long” found that Northern Ireland’s 250,000 migraineurs (as they are called) are being abandoned by the health system.

The report uncovered a number of problems that migraineurs struggle with finding their way around.

The charity said this worsened people’s migraines and reduced their ability to lead their lives, with major implications for personal relationships, work, and mental health. She therefore calls for an urgent review of migraine care in Northern Ireland.

Kyndall McCallum said, “Doctors are unaware that migraine disease can affect someone so badly that it negatively affects their daily life. For me the headache is daily and relentless. What I find most annoying is the lack of understanding and insight into this neurological disorder. “

Kyndall isn’t surprised by the results of the Migraine Trust report, which found that most migraine sufferers in the province never see a headache specialist, including those with chronic migraines who are referred to neurologists who may not have experience with migraines.

Kyndall said, “It took me 10 years to see a neurologist who was particularly interested in migraines. My mother and father took me to the doctors, I don’t know how often. In the beginning they said it had to be puberty or stress in school.

“I’ve seen three different general practitioners, four different neurologists. When I was a teenager, my parents paid for me to go private. Since then I have had brain scans, physio, acupuncture. There are 10 preventive medications that I have tried, I have been given botox, and have tried all of the alternative therapies.

“In 2018 I visited the National Hospital for Neurology and Neurosurgery in London. I had a surgical procedure called occipital nerve stimulation. I had a battery 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 worked. I had to travel back and forth to London every 12 weeks to have it reprogrammed. They came to the decision that it would be removed because it was of no use to me. “

“I am currently prescribed Ajoyvy injections, but I had to apply for funding and it took me over six months to get access.”

The Migraine Trust said the problems in migraine health care have worsened over the past year as many people who are eligible for the new (and first drugs designed to prevent migraines) struggle to get on access even though it is approved for use in the NHS.

Through inquiries about freedom of information, the charity discovered that access to these drugs was a zip code lottery. Only one in five health authorities in Northern Ireland responded, stating that eligible patients had access to CGRP treatment, compared with six in seven in Wales and seven in 14 in Scotland.

Kyndall said the other side of her daily migraines was the impact on her mental health.

“It ruined my life, even though it’s completely normal for me now. In 2006 I was correctly diagnosed with depression. “

The migraine has a massive impact on their school life, friendships, and career.

“I managed to get five GCSEs, but if I didn’t have migraines I could definitely have done better in school, stayed and probably gone to college. Friends just got tired of asking me if I wanted to do something after school because I knew my head would get really sore then and it would be really hard to hide it.

“I worked as a retail manager, but with great effort and perseverance. But it became too much. “

The Migraine Trust found that some patients in Northern Ireland currently have to wait up to 95 weeks to see a headache specialist, the longest waiting time in the four UK countries.

Slow diagnosis or no diagnosis is also a problem. People with migraines are often only diagnosed several years after the onset of migraine attacks.

Rob Music, CEO of The Migraine Trust, said: “Despite the widespread and far-reaching impact of migraines on the Northern Irish population, this report highlighted that migraines are largely absent from NHS plans or local public health strategies and very little money is spent on research and access to specialist care is patchy and inconsistent in Northern Ireland and the rest of the UK. This has to change.

“Our support services at The Migraine Trust are contacted daily by people struggling to get a correct diagnosis and having to wait months to see a specialist; or who do not have access to the NICE-approved drugs for which they are entitled. “

The charity said anyone diagnosed with migraines should be given an individual care plan that was developed closely with them. Regardless of whether medication is prescribed, the treatment plan should be reviewed regularly at an interval set with the doctor.

Kyndall feels abandoned by the health service.

“There is no such thing as an individual treatment plan. You are put on a tablet and that’s it. ”

The Migraine Trust wants general practitioners to have up-to-date training in migraine management as well as adequate access to secondary and tertiary specialists.

The Ministry of Health of Northern Ireland should encourage the recruitment of additional headache specialists and consultative neurologists to bring Northern Ireland in line with other European countries.

Each local health authority in Northern Ireland should appoint a migraine / headache director to advocate for migraine management, share guidelines among colleagues, and lead needs assessments, service development and medical education across the area

In Northern Ireland, public awareness campaigns should be developed to improve understanding of the range of migraine symptoms and to reduce the stigma associated with migraines.

“Taking action now to improve migraine care in Northern Ireland will have far-reaching benefits, not only in terms of the quality of life for hundreds of thousands of migraineurs, but also in reducing the number of days lost to sickness and reducing pressure on A&E departments. “Said Rob Music.

“We know we could save a lot more of the 43 million working days lost to migraines each year in the UK and avoid most of the 16,500 emergency rooms for headaches and migraines if we looked after people better. Change is urgently needed in the interests of the 10 million people in the UK living with migraines. “