“I felt I just had to push through, even if it meant closing my eyes at my desk until an aura passed, hoping nobody would notice”

Esther tells us about her experience of migraine with aura

3rd April 2024

I started getting migraine with aura when I was 29, (I’m 43 now). They were occasional and seemed to come at stressful times, always with aura, sometimes with headache, sometimes not.

My experience of aura presents as rainbow-like zig-zag patterns, which move along the field of vision and become more prominent when I focus on something. It means that things like reading, and particularly reading on screens, becomes incredibly difficult.

Initially, because my symptoms related to my vision, I was referred to an eye hospital, and this led to a delay in getting a diagnosis of migraine.

When I was around 37 or 38 my migraine had reached a frequency of monthly, and I realised that there was medication available. I went to the GP who prescribed a triptan and an anti-sickness medication.

When aura came on, using the medications often seemed to prevent the headache, though not always. After using these for a year or two I started to notice there were side effects, and eventually these side effects were outweighing the benefits, so I stopped taking the medications.

‘I stopped driving altogether for a while’

After a move from London to the countryside (which was a positive change that I was excited for, but a big life change nonetheless) I saw a huge uptick in frequency of migraine attacks. I started avoiding anything social that involved going out at night especially driving because the contrast in light and dark at night in the countryside seemed to set off the migraines. I stopped driving all together for a while but have found yellow-tinted night driving glasses have helped reduce the impact of the contrast.

After a return to the doctors, they prescribed a preventive medication, which although does have side effects (in particular drowsiness that can make getting up in the mornings a challenge), I feel overall it has helped. It can be hard to know what is actually helping, whether it’s the medication, or just a more settled life after a big life change.

‘I felt I just had to push through’

I’ve never really spoken about migraine in the places I have worked. In a previous role, I was working in a hospital as a temporary member of staff. Even though the environment could be very difficult for me with my migraine symptoms (especially the harsh fluorescent hospital lighting), I didn’t feel that I could really mention it to my colleagues. I felt I just had to push through, even if it meant closing my eyes at my desk until an aura passed hoping nobody would notice.

In my current role, I’m a senior leader in a small charity and I usually work from home. Even now, I don’t tend to talk about migraine as there is almost an embarrassment there. For example, at a recent training session, I was doing an exercise that involved getting up and presenting to the group. I felt an aura beginning but I just carried on and didn’t mention it. I think in that situation I assumed colleagues would associate migraine with stress and would think I had just been overwhelmed by the task of presenting. That is most likely me projecting my concerns of a negative reaction though! It probably also relates to the stigma of migraine being ‘just a headache,’ or not something worth taking seriously.

Migraine can impact those around you and because people can’t see what is happening inside you and you ‘look fine’ on the outside, it’s difficult to articulate the effects. This means something that should be simple and fun such as a trip to the seaside with my partner could end up being quite difficult with all the different sensory triggers. My partner is a doctor, so she already had some knowledge of migraine, but she has come to recognise some of the patterns of my migraine attacks  (even down to the cravings I experience for sugary treats like ice cream being a potential warning sign of an attack coming on!). Things like her knowing to turn down bright lights are really helpful though.

Seeing The Migraine Trust website was great for me because it helped me to feel less guilty, embarrassed, and secretive about my migraine. Even though I’m still a bit like that. Being able to read about others’ experiences was so helpful: I read the first story and burst into tears. It’s why I’m keen to share my own story, so that others might see it and realise they are not alone.