'It's not just a headache' - Scots woman with chronic migraine reveals pain and stigma of the condition

“It’s like someone trying to tighten screws into your head and then having a hammer pounding above your eye.”

Sunday, 24th October 2021, 4:55 am
Updated Sunday, 24th October 2021, 8:43 am

This is how Katy Brown, 32, describes the chronic migraine flare-ups she has been living with for eight years.

Brown, who lives in Edinburgh, has experienced pain on a daily basis for the past five years, and has tried “everything and anything” to relieve it, from prescription medicines to cognitive behavioural therapy, including botox and having a daith piercing in the inner cartilage of her ear.

But in addition to the pain, Brown faces the stigma of people “trivialising” her condition, comparing it to a headache, which does not reflect the debilitating pain she experiences.

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Katy Brown has had five years of daily pain.

“Often people just don't quite get it,” she said.

"I guess if you've not had a migraine it's really hard to understand.

“Even some of my closest friends have not been able to understand until they've seen me on day six of a migraine flare-up when I can hardly open my eyes and it starts to be really visible that I'm in a lot of pain.”

The “invisible” nature of her condition can mean that people underestimate it, Brown said, and she is often told that she “looks healthy”.

Chronic migraine is often "trivialised and overlooked", Ms Brown said.

It does not help that migraine is “everyone’s favourite excuse for a fake sick day”, she said.

“I know they are trying to help, but people will often offer me paracetamol,” Brown added.

“I know it comes from a really good place, but it also fundamentally reflects a lack of understanding.”

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Brown, who now runs a consultancy focusing on corporate sustainability and social impact, first developed tension headaches when working in a stressful consultancy job in the City in London.

She believes stress is a contributing factor to her migraines, but does not entirely explain them.

Brown has tried a series of remedies and prescription medicines, with no success. She now takes a monthly injection, but this is not working and she plans to come off it.

“You get to a point when you're in severe pain where you will try anything… because you're so desperate,” she said.

While she tries to find relief for her migraines, Ms Brown also wants to raise awareness about the condition.

"It can be a really lonely place and if I can support others who are living with chronic pain, then it's worthwhile,” she said.

Gemma Jolly, Information and Support Services Manager at the Migraine Trust, said despite being “hugely common”, migraine is misunderstood by many people.

“Everyone thinks it's just a really bad headache, and you should just pull yourself together,” she said.

“It's just not true, it's a chronic neurological condition.”

The most common symptom of migraine is head pain, she said, but others include sensitivity to light, sounds and smells, nausea, pins and needles, or aura, which can involve seeing flashing lights or blind spots.

She added: “We hear from people who have lost their jobs, had to give up jobs, or it's affected their relationships.

“We hear from people who don't want to have children because they’re worried their children might have attacks, from people who can’t socialise with their friends… it's so much more than head pain, there's a whole raft of symptoms.”

She added: “It's hugely debilitating, and that's really under-recognised in society.”

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