Living with chronic migraines: 'It felt like I was being hit with a hammer for weeks'

Sonya Barlow, 31, first experienced migraines in her early 20s when she started working. They became chronic, and she ended up losing her job. Here she shares her journey to diagnosis (including why we need to believe women in pain more) and how she hasn't let her condition stop her achieving what she wants.

"In 2015 I graduated and fell into the world of tech, then in 2016 my migraines started flaring up," Sonya, from London, recalls.

"We weren't really sure why. I'd go to the doctors and it would be 'growing pains', even though I was an adult."

In 2018, Sonya started a brunch club with LMF network [Like Minded Females, her now much-evolved business], because she was finding it difficult to navigate the workspace with a chronic condition.

"Then in 2019 I actually lost my job. And my migraines were a big part of that. I'd get comments from managers like 'you don't look unwell', or 'you're too energetic for someone who's in chronic pain', or 'you've missed this meeting', or 'you've gone home early'.

"I was navigating why I functioned quite differently from other people [Sonya also has ADHD]. I could get my work done. But I wasn't a conformist. I was quite different to other people in the workspace."

Recalling one incident, she explains, "I had a cluster headache and a migraine for two weeks. It literally felt like somebody was banging my head with a hammer. But because my work was letting me go, they basically were like, 'if you don't come in today, you're not going to be here for this role that we're moving you into, and you're gonna lose your job'."

On her general experience, she says, "Even though it was a startup with flexible working, my manager would constantly micromanage me because of my migraines.

"I'd get to work at 8am but I'd leave by five and he would say, no, everybody else stays till seven. And I'd think, but do they? I also have migraines and I need to think about my commute so I can go home and sleep with a decent routine [she was also figuring out the dark might be a trigger]. "

Chronic migraines don't have to hold you back

In 2020, LMF became an inclusion and diversity consultancy for other businesses, reinvesting the profits to help young professionals (especially women) navigate the workspace. In the same year, Sonya got a book deal, and the year after began her own BBC radio show, The Everyday Hustle, named the best radio show in the country in 2022.

Then in 2023, she enjoyed starting a YouTube and began being more open about her migraines and navigating life with a chronic illness.

"A lot of stuff I do socially and vocally is because I want other girls, especially women of colour, to know that while we have to work harder, might be in pain, and statistically will have more migraines than men, it doesn't mean we're not capable of achieving what we want to."

Migraine triggers

With there endless possible triggers for migraines, and Sonya not feeling like she had much help navigating what hers could be, she explored a lot on her own.

"I went vegan, I gave up dairy. I've done everything you possibly can imagine," she says.

"I think my triggers are quick weather changes, office lights and bright tube lights when it gets dark. My triggers are also when you do something really quickly or something rushed, my brain turns like it's on fire."

Navigating treatment

While it works for some people, Sonya eventually decided medication wasn't right for her.

"At one point, I was on nine pills a day. And one day, I refused because I was like, I'm in my mid 20s, I can't do nine pills a day for the rest of my life," she explains.

"I didn't think antidepressants and blood thinners were good for my lifelong journey, especially as a woman who might want to have a family one day."

"I actually once had two male doctors telling me to go have a baby to fix my migraines," she adds.

"They did not do any tests. They did not check my hormones. And my response was, well, are you going to help me look after the child for 18 years?"

It should be noted that while, overall, migraine can improve during pregnancy, possibly due to increased oestrogen and endorphin levels, not everyone will see this improvement (a rare few will see the opposite), and it certainly shouldn't be viewed as a 'fix'.

Fighting for a diagnosis

It was after Sonya's friend had to take her home from a birthday meal due to a migraine causing her to throw up, not be able to see and feel dizzy, that she started going to the doctors.

Between 2016-2020, she experienced four years of chasing different GPs and neurologists and trying all the medication available. She also started to research the ink between neurodiversity and migraines (though unfortunately women of colour often aren't included in the research, she points out).

"The first time I was officially validated with my migraines was the end of 2020, when we had kind of come out of lockdown and I met a female neurologist. She said, 'I not only believe you, I get it'," Sonya recalls.

"I'm not an emotional person in that sense, but I just burst into tears. I was like, I have had to fight for this.

"I said, 'oh my god, you believe me?' She was like, yeah, 'people like yourself who are high achieving and have chronic migraines will still get the work done. But it's the rest of the world that will tell you you're not able to do it'.

"Women especially who have chronic migraines, think they're not capable, or able to do more. And so they'll lessen themselves. I want to be proof that actually, you can have this disabling illness and you can still do something with your life."

Making life work for her

"The first thing is I run my own business, not because I want to be a big famous entrepreneur, but because I can manage my calendar," she says, without fear that too much illness will lead to being laid off.

"The second is, now I actually tell my clients, friends, consultants at the beginning, hey, I do have chronic migraines. And I also have ADHD. That means if I have a flare up, I'll give you 24 hours notice, but it may mean that I have to cancel a few things. And I have done that.

"The third is routine, structure and exercise."

And the fourth, she acknowledges, "Is a fad diet, so I haven't promoted it. But after nothing working in eight years, I started doing keto. I was able to reduce the processed food or the amount of sugar I'm taking and increase my vitamins, increase the oils in my diet, and increase the fish and chicken." For her, she saw health benefits.

"But I think most importantly, is giving yourself a break and saying, hey, if you're going to be late to something, you're going to be late. I don't run for the bus or tube. If I've missed my train or plane. I've missed it.

"I don't panic or overexert myself in the same way."

Sonya also has to set boundaries in her day-to-day life, which might include staying home and making dinner every evening so she can have the whole day out on Thursday, then that's it for another week.

"I also make sure my money goes on travelling versus designer bags because it helps me to shut down and shut off. There's a comfort of going to places where there's heat because it helps you with your recovery. You're also not in the pressures of your house," she adds.

"As an example, I like to go to Asia a lot because I like to have fresh coconuts, the water is quite nourishing. I don't buy fancy designer things. I'd rather invest in things like that."

She has also tried and seen the benefits of things like taking herself offline for 10 days.

"I don't take any actual medication but I'm trying non-westernised medications and trying to make sure I'm incorporating a balanced diet," she adds.

She also uses 4head, a bit like Tiger Balm, and has discovered wrapping a spare pair of tights around her head (safely) which are thin but provide a dark space help her migraines.

"A big part of migraines, unfortunately, is you can have them forever, so you need to be in a position where you're looking after yourself," she adds.

Sonya no longer pushes through symptoms like seeing spots or tingling sensations, later suffering the consequences, but listens to her body.

She also thinks everybody should have a bit of therapy, as an addition, to help them navigate chronic migraines or illness.

'If it wasn't for my migraines, I might not be as successful'

"If it wasn't for my migraines, I might not be as successful," says Barlow. "I might not have wanted to start my own business. I might not put deadlines into place. I might not exercise regularly. I might not know the importance of food as medicine, electrolytes, and vitamins.

"The beauty is that everyone is different. Migraines have taught me everyone is suffering in their own way. How they show up online or offline doesn't mean that's their reality.

"It's made me a lot more calm and intentional with how I treat others, because that's how I want to be treated.

"If someone doesn't reply back to me, or they don't want to meet me, or be my friend, I've learned not to take it personally.

"Let's just be mindful of each other, give people the space they need, but let them know we're here for them."

To find out more about chronic migraines, see our expert-led explainer here:

What is a chronic migraine? Symptoms, causes, treatments and myths debunked