Mignon Van der Watt is a PhD student at King’s College London, working in collaboration with The Migraine Trust through the iCASE (Industrial Collaborative Awards in Science and Engineering) programme. Since October 2024, she has been working on research that looks at the role of non-pain symptoms in migraine. In the first of a series of blogs, Mignon shares with us the premise of her PhD research and why lived experience of migraine is so crucial to the scientific research process.

Migraine isn’t just pain — and research is finally catching up

Pain is usually at the centre of the conversation surrounding migraine. But for many people, the most disabling symptom of a migraine attack is not the pain itself. While research into this is improving, people living with migraine have long recognised that these non-pain symptoms are a central part of the condition. My PhD research, in collaboration with The Migraine Trust, aims to explore aspects of migraine that are often overlooked: the symptoms that occur beyond the pain.

Migraine is more than pain

Given the prominent nature of pain in migraine, the majority of the research to date has focused on understanding the source of head pain experienced during migraine attacks and how to reduce it. However, this focus has meant that non-pain symptoms and the brain mechanisms underlying them have received far less attention, despite their significant burden on daily life.

If you imagine shining a torch in a dark room, you can only see the area you point the light at. For a long time, our metaphorical torch has been fixed on pain. My research aims to help widen that beam, by shifting our focus to understanding what is happening in the brain to produce symptoms and how these symptoms might be better treated.

What are non-pain symptoms and why do they matter?

Non-pain symptoms are diverse and range from light sensitivity, neck stiffness, food cravings, fatigue and brain fog. These symptoms often “sound the alarm”, announcing the start of a migraine attack, as they are some of the earliest symptoms people experience. Importantly, non-pain symptoms can be just as disabling as the pain itself. They often persist throughout a migraine attack, meaning their impact can extend well beyond the headache phase. Many of these symptoms are invisible to others, which can make them harder to explain, recognise, or accommodate. Understanding these early symptoms may be particularly important, as they could offer opportunities for earlier recognition or intervention.

The focus of my PhD: the orexin system

If you’re awake or have felt alert, motivated, or hungry today, orexin has been at work in your brain. For any etymology enthusiasts reading this blog piece, the name orexin is derived from a Greek word meaning ‘appetite’ because of its prominent role in appetite. However, orexin is now known to play many roles in the brain. Orexin acts as a co-ordinator that helps the brain to know when to be awake, alert and hungry, amongst many other important functions.  Another way to think about orexin is as a stabiliser, as it helps balance your behaviour with signals from the internal body and external environment.

Changes in the way orexin is functioning, for example in its roles in wakefulness or alertness, could help explain why people with migraine experience fatigue or brain fog. Because the orexin system is involved in many of the same functions that are disrupted in migraine, it is an important system to study and has become the focus of my PhD research. By understanding the brain systems involved in non-pain symptoms, researchers can begin to identify new ways to better recognise them and uncover new ways to think about treating migraine, that does not purely focus on inhibiting the pain.

What I hope this research will achieve

Ultimately, my aim is for this research to help people living with migraine. I hope that it will help improve the understanding of the importance of non-pain symptoms. In turn, this could help increase recognition of their impact on people’s lives. In doing so, this research aims to lay groundwork for improved migraine treatment and management. Together, these outcomes have the potential to improve quality of life for people living with migraine.

Why Partnering with The Migraine Trust matters to me

Migraine research is important to me because it addresses a condition that is prevalent, disabling, and still widely misunderstood. The partnership with The Migraine Trust is what drew me to this project, as it allows us to bridge the gap between science and lived experience. Working closely with patients and organisations like The Migraine Trust helps ensure that our research is guided by what truly matters, and that it has the potential to be meaningful and impactful.

Looking ahead

Research is an ongoing conversation. This blog marks the beginning of a series in which I’ll be sharing insights from my PhD research and offering a behind-the-scenes look at the research process. It’s one of the ways I’ll be engaging with you as part of my partnership with The Migraine Trust. At the heart of this work are the people living with migraine, and their experiences will continue to shape the questions we ask.