'The symptoms never stopped' – life with chronic migraine

Growing up, I remember seeing my mum get sick. Every few months, I’d see that glazed look in her eyes, watch her wince with pain, and retreat to her room – blinds closed, medication in hand, and a bucket by her side. A day or 2 later, she’d emerge feeling better and back to her usual self.

I didn’t fully understand it at the time, but my mum’s experience was a common example of episodic migraine, marked by acute attacks of severe neurological symptoms like head pain, sensitivity to light and sound, and nausea.

My experience of migraine bore little resemblance.

In the years leading up to my own diagnosis of chronic migraine, I experienced a range of persistent health issues, starting with infections and digestive problems, and growing to include fatigue, anxiety, and severe pelvic, back and neck pain.

By the time I was 26, it felt like pain and illness were everywhere.

Things changed when the symptoms on the right side of my body became more pronounced. I had intense pain radiating down the right side of my neck and back, feelings of numbness and tingling, and noticeable changes to how I was walking.

At its worst, I remember falling over in the pool while trying to do exercises for my back pain. My right side had lost the ability to function in water, and it wasn’t faring much better on land.

My doctor referred me to a neurologist, who listened to my history and quickly suspected migraine might be at play.

The day I was first prescribed migraine medication is one that sticks with me. Within hours of taking it, I could feel something shift in my head, like it was trying to switch back on. My response to the medication helped confirm the diagnosis of chronic migraine, and we moved forward with more treatment.

Chronic migraine is defined as having migraine symptoms on at least 15 days each month. In my case, the symptoms never stopped.

It’s been two years since my diagnosis. I now manage with medication and regular procedures like Botox and nerve blocks. Life can still be hard, but I’ve come a long way. I now have much less severe symptoms and more and more migraine-free days.

I have been able to adjust my life to better support my health, like working freelance from home, limiting overly stimulating environments, and getting specialised support for mental health.

I’ve even returned to the pool where I once fell. I’m not only back to walking in water, I can now swim laps again – something that brings me great pride and joy.

Stigma is a barrier to diagnosis and treatment

Migraine is recognised as a heavily stigmatised condition, with many people, from health care professionals to colleagues and loved ones in our communities, easily dismissing our symptoms as ‘stress’, being ‘too sensitive’ or ‘just everyday aches and pains’.

You just can’t access the right health care and social support when people don’t accept your symptoms are worthy of help.

I know that I speak on behalf of so many younger women when I say that we feel this so deeply when we ask for help for pain.

Part of the problem is also a knowledge gap. Migraine is a complex condition with different sub-types and symptoms which can vary from person to person, like it did for my mum and me. Without the right knowledge, it can be overlooked or mistaken for something else.

I do feel reassured that there’s lots of great work happening across research, health care and communities for migraine. There are treatments and support options that can help. However, for many people, they remain out of reach.

I know we still have a long way to go.

For me, progress means a health system that can recognise migraine early and offer accessible treatment for everyone. It also means a society where all of us, no matter our role, can meet the words ‘I have migraine’ with understanding, not judgment or dismissal.