Migraine has been a part of my life for such a long time. I was probably around four when I experienced my first attack. I don’t recall being scared, which makes me wonder if that was truly my first, or just the first I can remember. I just remember it felt ‘normal’ to me growing up.

Migraine runs in my family. I recall my dad lying in bed on weekends with a cold flannel over his eyes, suffering quietly. It was just part of life for him, as it became for me. By the time I started school, migraine was already my ‘normal’. I didn’t know anything else. I simply gritted my teeth and carried on. I didn’t think to ask to go home early or see the school nurse. Even when the pain was unbearable, I just tried to stay under the radar, not wanting to be seen as struggling to pay attention.

It wasn’t until my teenage years that I thought, maybe I should see a doctor. But back then (in the 1980s) there wasn’t much on offer. Paracetamol was pretty much the standard response.

“What made it worse was how alone I felt with it.”

Migraine attacks have always been physically and emotionally brutal. I rarely get visual auras, but the headaches are intense and pounding, often accompanied by nausea. Each one feels like a cruel cycle repeating: “here we go again.” What made it worse was how alone I felt with it. Nobody else around me seemed to be going through the same thing. I underachieved at school, not because I wasn’t capable, but because I was constantly battling something invisible. I didn’t feel I could talk about it, and that silence was isolating.

University was much the same. I pushed through, as I always had. It wasn’t until I was working in the late ’90s that migraine was finally noted in my medical records. Even then, there wasn’t much that could be done. Resources were limited, and I still felt I had to soldier on. When you’re working, taking time off suddenly has real consequences – being paid to fulfil a role makes it a different dynamic. So, I masked it.

I remember the first time I ever took a day off because of migraine. I was in my late twenties. My manager was very understanding and told me to go home and rest. Even so, I remember thinking, I don’t want to take the mick. That’s how ingrained the guilt and pressure were. With less supportive managers, it was harder. I felt like I was being punished for being quiet about my illness—but speaking up would have been worse. There’s a real stigma: “We can’t hire him—he’ll be unreliable.” So many people still don’t understand that a migraine isn’t ‘just a headache’.

There’s a genetic link of over a hundred years of migraine in my family. I had spoken with my grandmother about it – she remembers her mother and grandmother experiencing migraine too. Interestingly, her migraine attacks eased off when she reached 70, and she lived another 26 years nearly migraine-free. Even her husband, my grandfather, had them. My dad, however, never sought help—just toughed it out.

Over the decades, I’ve tried more than 50 treatments. I also tried around 25 alternative therapeutic approaches: acupuncture, therapies, anything that seemed remotely plausible. I’m a natural skeptic, but at some point, you’ll try anything so long as it’s not likely to cause harm. I even had heart surgery to close a hole in my heart, hoping it might help. I’ve gone through countless medication trials – changing doses, eliminating triggers, spacing treatments out, all in the hope something would work. But the results were always the same. It’s deeply disappointing.

“Leaving my job when I still had 15 good working years ahead of me was hard to accept.”

As I’ve aged, I’ve found it harder to bounce back from migraine attacks. My resilience has taken a hit, and that affected my working life more and more. I ended up having lots of short term absences and although I had sympathetic managers later on, including at my final job with a local authority, the reality was that I simply couldn’t manage full-time work anymore. I reduced my hours but then got hit with a bug and developed chronic fatigue syndrome (CFS). That was the final straw. It became clear I couldn’t continue working.

I went through the attendance management process and applied for early retirement on ill health grounds. Initially, it was rejected. Occupational Health said I couldn’t challenge the GP’s opinion but I didn’t accept that. My own GP was supportive, and I fought for it. Eventually, I got the result I needed, but it came with a heavy sense of disappointment. I still had 15 good working years ahead of me. Losing that—not just the structure and purpose, but also the financial stability—was hard to accept.

“With migraine there are just so many variables.”

Looking back, migraine has significantly impacted my career. I had hoped to progress further – at one point, I was doing further studies in a legal role at the council but those had to be abandoned.

Sometimes I do everything ‘wrong’ and feel fine. Other times, I do everything ‘right’ and still get hit with a migraine attack. There are just so many variables.

“I worry about whether my son has inherited the migraine gene.”

The impact on my personal and family life has been huge. There are many times when I’m simply not there. I drive my son to school, and there have been days I simply can’t take him. Thankfully, the school understands. But I’ve missed out on a lot—family events, social occasions—and that sense of missing out never really fades. One of my biggest worries is whether my son has inherited the migraine gene.

Migraine means being forced to put your life on hold, regularly and without warning.

I would hope that in sharing my story, it might help someone else feel less alone in their experience of migraine.