A Northern Irish woman who has suffered from chronic migraines for 20 years calls for more understanding of an illness that affects her life.
yndall McCallum (32) from Bangor described the daily challenges she faces in life with “relentless” headaches.
In a recent report by the UK’s leading charity, The Migraine Trust, Northern Ireland’s “broken health system” is accused of abandoning around 250,000 people who live here with migraines.
This includes some patients currently waiting up to 95 weeks to see a headache specialist, the longest waiting time in the four UK regions.
Kyndall was diagnosed with new daily headaches and said she waited over 10 years to get a referral for specialist treatment and recently six months to access medication.
“The pain is always there, it never really goes away,” she said.
“Most of the day I’m just in my house, bedridden in a dark room. In addition to the pain, there are all the other symptoms that come with it, such as nausea and sensitivity to light and noise.
“I also get terrible visual auras when you see zigzags or bright lights in your field of vision, which is pretty scary.”
Kyndall said her migraines started when she was 12, Kyndall said the pain often starts at lower levels in the morning before getting so intense around noon that she has to go to bed.
“It is like this every day. Just doing everything around the house, like cooking, cleaning, or even showering, affects your sleep, ”she said.
“I can’t work, it just affects everything from my social life to friendships. Since it’s invisible, it’s really hard for people to grasp.
“It’s incredibly difficult to keep a full-time job, especially at work. You are constantly being told by employers to cheer up or throw away comments like ‘Kyndall has a headache again’.
“In the end, you take days off because you cannot physically get out of bed and then you are absent too much.”
Kyndall said she tried “literally anything” related to medical treatment, including surgery in London in 2018.
“I had surgery that put an implant in the back of my head that gave constant electrical impulses. Unfortunately, it didn’t help at all.”
She said giving general practitioners easier access to specialized care would be a big step forward for others.
“I think if you only knew the extent to which migraines can affect people, like me, it rules my life,” she said.
“It’s awful, it affects everything. I have severe depression because of the pain I live with every day.
“It’s really difficult to convey. Outwardly I just look like a normal 32-year-old girl, but behind closed doors it’s a completely different story, of course.”
Kyndall has tried attending counseling sessions but said it can be difficult to identify coping mechanisms for physical pain.
“There wasn’t a traumatic event or something that could help me turn into a positive.
“If I didn’t have my family around, you just have to hope that one day there will be a drug that really helps, or that they’ll find a reason why people get migraines in the first place.”
In a message to Minister of Health Robin Swann, she said, “I just think a lot more time and awareness is needed, starting with schools.
“I just remember laying my head on the desk and the teachers thinking I was just that rebellious teenager who wouldn’t listen to them.
“So awareness in schools, colleges and in the workplace would be a good start. And then GPs would really be much more aware of not just prescribing acetaminophen or aspirin.
“There are also no follow-up evaluations, you only get medication within a 10-minute appointment and that’s it.”
Belfast GP Louise Rusk has a particular interest in headaches and is a trustee of the Migraine Trust.
“Migraines are the most common neurological reason to see a family doctor,” she said.
“The vast majority of primary care is administered by general practitioners, and if done really well, this is the best place to treat people with migraines so that help can be provided in a timely manner. One-page headache diaries like the one on the Migraine Trust website can be very helpful for both the GP and the patient, especially now that most consultations are over the phone. “
She said there was a “definite interest” in migraines among general practitioners in Northern Ireland, with targeted training and education from some of the GP associations.
“Unfortunately, as with many chronic illnesses, patients have to wait a long time to see a specialist, which can have negative effects on education, work and mental health.”
The Migraine Trust has now called for an urgent review of migraine care in Northern Ireland.
The disease is said to be “one of the most disabling diseases in the world” and affects one in seven people in the UK, which is around 250,000 people in Northern Ireland alone.
More information is available at migrainetrust.org
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