When the Doctor Becomes the Patient: My First Encounter with Migraine

As a clinician and headache researcher, I have spent several years studying headache disorders and migraine, aiming to learn more about it and alleviate the suffering it causes. But despite my professional expertise, I had never truly understood what it feels like to experience a migraine attack – until one ordinary evening, while watching a movie at home, I found myself facing the very condition I have dedicated my career to understanding.

The onset was gradual. As I watched the film, I realised that I couldn’t clearly read the subtitles. Initially, I was confused – was it just a momentary lapse in focus? But when I turned my gaze to the wall, I noticed something strange in my visual field: a crescent-shaped distortion that lingered for about 30 minutes (Figure 1). My professional instincts kicked in, and I began to suspect what was happening, but I still wasn’t fully prepared for what followed.

Later, the headache began. It wasn’t severe – moderate at most – but it was distinct. At first, it was concentrated on the right side of my head, a pulsing discomfort that gradually spread until it enveloped my entire head. This pain did not intensify with movement or exertion, but it was accompanied by an overwhelming sensitivity to light and sound. The light from the TV screen became unbearable, and I couldn’t tolerate sounds. For the next 24 to 30 hours, this headache persisted, casting a shadow over everything I did.

What struck me the most, however, was not just the physical symptoms. The day before the headache, I had felt an inexplicable sense of unease – a kind of foreboding that I couldn’t shake. I mentioned it to a few friends, remarking that although everything seemed fine, I felt a profound sense of gloom (Premonitory symptoms – Figure 2). The day of the headache, this feeling intensified. Even though I managed to go to the office, I felt as if I was moving through darkness. The sunlight, became an oppressive force, driving me to seek refuge in the quiet, dim confines of my home. I ended up leaving work early, seeking solace in sleep, grateful that my flexible work schedule allowed for this retreat.

Experiencing a migraine attack first hand has given me a profound new perspective on the condition. I have spent hours reading about the pathophysiology of migraine – how cortical spreading depression, a wave of neuronal depolarisation, contributes to the aura; how trigeminovascular pathways mediate the pain; and how the brain’s sensory processing goes awry during an attack (3). I’ve discussed the latest research on CGRP (calcitonin gene-related peptide) inhibitors and other treatments with colleagues, and I’ve empathised with patients describing their symptoms.

But none of this could have prepared me for the reality of living through a migraine attack myself.

Despite affecting over one billion people globally and being the leading cause of disability in people younger than 50 years, migraine is often misunderstood and underappreciated in terms of its impact (4). This experience has made me acutely aware of why this is the case. The unpredictability of the attacks, the sensory overload, and the profound fatigue and mood changes that accompany the pain are debilitating in ways that go beyond the physical symptoms.

As a clinician, I have always prided myself on being empathetic towards my patients. But this experience has deepened my empathy in a way that only personal experience can. I now understand, on a visceral level, the fear, frustration, and helplessness that come with a migraine attack. I realise how important it is to not just treat the pain, but to listen to and validate the experiences of those who suffer from this condition.

Moving forward, this experience will undoubtedly influence my approach to both my research and my clinical practice. It has reminded me that, as doctors and researchers, we must continually strive to understand our patients’ experiences, even when they fall outside the scope of our own. We must remain humble in our knowledge and open to learning from our patients, who are the true experts in their own experiences.

To my colleagues, I offer this reflection as a reminder of the importance of empathy in medicine. Our patients’ descriptions of their pain and discomfort are not just symptoms to be treated; they are expressions of their lived reality, deserving of our full attention and respect. And to those who suffer from migraine, I extend my solidarity. I may have only just begun to understand the full scope of your experience, but I am committed, more than ever, to advancing our understanding of this condition and improving the treatments available to you.

Faraidoon Haghdoost

The George Institute for Global Health, University of New South Wales, Sydney, Australia.

References:

1. Viana M, Hougaard A, Tronvik E, et al. Visual migraine aura iconography: A multicentre, cross-sectional study of individuals with migraine with aura. Cephalalgia 2024; 44: 03331024241234809. DOI: 10.1177/03331024241234809.
2. Thuraiaiyah J, Ashina H, Christensen RH, et al. Premonitory symptoms in migraine: A REFORM Study. Cephalalgia 2024; 44: 03331024231223979. DOI: 10.1177/03331024231223979.
3. Ashina M, Terwindt GM, Al-Karagholi MA-M, et al. Migraine: disease characterisation, biomarkers, and precision medicine. The Lancet 2021; 397: 1496-1504. DOI: 10.1016/S0140-6736(20)32162-0.
4. Ashina M, Katsarava Z, Do TP, et al. Migraine: epidemiology and systems of care. The Lancet 2021; 397: 1485-1495. DOI: 10.1016/S0140-6736(20)32160-7.