I vividly remember an afternoon when I was eleven. I was sitting in the last lesson of the school day when my surroundings suddenly took on an unfamiliar quality. The teacher’s face looked strange and somehow fragmented, and the text in my history book became speckled with holes, becoming illegible. The blank spots in my vision soon developed into a tiny round dot, flickering in the distance, with a barely perceptible zigzag edge. The dot grew into a moving, multicoloured curve that gradually formed an open circle shape. This flashing, disorienting ring continued to grow and obscure everything in view, until it finally moved out of my field of vision – only to be replaced by a thudding, intolerable headache.

This was my very first migraine attack and I’ve lived with migraine with aura ever since.

My migraine attacks usually still follow the general pattern of that first one. The frequency of attacks has increased over the years and at their most frequent I’ve experienced them daily with up to three different auras within 24 hours. Through trial and error, I have discovered that taking ibuprofen and antihistamine at the onset of the aura can lessen the severity of the headache.

Not just a headache

For me it’s usually the non-headache aspects of migraine that can be the most debilitating. In the prodrome phase I experience a range of disconcerting symptoms including fatigue, depression, anxiety, visual and auditory hallucinations, visual disturbances, insatiable hunger, pins and needles, light-headedness, facial and muscle pain, déjà vu, number reversal when reading, and cognitive impairment. The severe visual aura leaves me temporarily blind and disorientated, and the postdrome phase is marked by extreme fatigue and brain fog. Both the prodrome and postdrome can last for several days. During the attack itself I get really fatigued straight away and my vision remains impaired. My temperature regulation is also affected, and I feel very cold or very hot.

I’ve really struggled to get across to GPs that it isn’t the headache part I find the hardest to cope with; it’s the pre and post migraine phases and the aura. When I’ve approached the GP with these symptoms they get dismissed. We need people to understand a migraine isn’t just a headache.

My GP wrote to neurology requesting a referral, but they have said I need to try two more preventatives for several months each until they will even consider offering me an appointment. I have no idea if they will work or just delay the referral I desperately want. I feel like I have to jump through hoops and it’s hard to have trust as I don’t feel like I was taken seriously for a long time by health professionals.

I’ve tried various supplements for migraine prevention including riboflavin and magnesium, and I’m currently on the maximum dose of propranolol. I believe the propranolol helped to lessen the frequency of attacks for a time, but I’m concerned that its effectiveness may now be waning, and I would like to try anti-CGRP treatment next. It’s just such a long process; you often have to spend months taking a treatment to try it, then if it doesn’t work wait months again to get a new appointment and the cycle continues.

Over the years, I’ve also experienced several attacks that have differed slightly from the norm, including some involving transient aphasia. On one occasion, I lost my ability to understand others. On other occasions, I’ve been incapable of forming sentences and comprehending my own speech. One time I felt such a disconnect during a migraine attack that I couldn’t work out what was happening.

Living in fear

Living with migraine means living in constant fear and anticipation of the next attack, which could strike at any time. The unpredictability of the condition causes ongoing worry, and I scrutinise every instance of feeling slightly out of sorts, concerned it could be an early sign of an attack. I don’t drive anymore as I’m too worried about what could happen. I teach and compose music, and as a self-employed musician I have some flexibility to rearrange or cancel work, but cancelling means being out of work and I have to cancel things often.

Despite its prevalence and severity, migraine remains a poorly understood condition. It is one of the most disabling and common diseases in the world, yet public awareness is lacking, and the condition is often trivialised. This needs to change.

Music and migraine

I’m a composer and have written two pieces to raise awareness of migraine: “Aura” depicts my own aura experience in musical form, and “Kaleidoscope” was inspired by Hubert Airy’s iconic illustrations of migraine aura.

I hope that these pieces of music, alongside my personal story, may help to change some people’s perceptions of this misunderstood disease.