I was around eight or nine years old when I first started to experience migraine. At that age, I didn’t really know what it was, just that I was in pain. My mum lives with migraine too, and she realised that I was likely experiencing the same thing.

There are so many migraine symptoms I can experience – from head pain to a drooping eye that resembles a stroke. I often get visual aura – half moon shapes in my right eye that tell me the head pain is coming. I struggle with neck pain, and pain around my sinuses that I thought was sinusitis for a long time. I often get nauseous and can end up being sick. There are so many symptoms with migraine, it’s why I hate hearing ‘it’s just a headache’!

Most nights I’d cry from either emotional distress or physical pain

I struggled through school with migraine, but things really ramped up as I moved toward doing my GCSE exams. Stress is a huge trigger for me, so exam season is challenging. I did my GCSEs in the midst of the covid19 restrictions, which meant I didn’t physically sit exams, our marks were based on our overall grades. Thankfully I passed mine and moved on to A levels. Unfortunately my situation continued to deteriorate due to migraine.

Most nights I’d cry from either emotional distress or physical pain. I don’t often hear people talking about how difficult it can be to start, or change, migraine medications. During my time at school, I tried various preventive medications, and the experience was so awful. It takes time to adjust to a new medication, and some of the ones I was prescribed had horrible side effects. One particular medication really negatively affected my mental health, and I had to come off it. At this time, my doctors were also concerned about my risk of Medication Overuse Headache. They advised me to stop taking even over-the-counter painkillers. Between the side effects of preventives, not having my usual painkillers, and the actual migraine symptoms, it just felt unbearable.

The school started to send out attendance letters to my parents

The lack of support from my school was possibly the most upsetting part for me. I was dealing with so much and received no help. I dropped one of my A level subjects in an attempt to manage the workload. I would push through as much as I could, probably making myself more poorly in doing so. Still, there were many times I was simply too ill to do anything other than lie in bed. At one stage, I experienced a 93-day migraine attack that left me in and out of hospital. The school started to send out attendance letters to my parents and yet didn’t seem to want to understand the reason behind my absences. I decided to print out information from both The Migraine Trust and the government website on their duty to support students with a disability or long-term health condition. Armed with this information, I set up a meeting with the school to explain the impact migraine was having, and what they could do to support me.

Unfortunately, even after advocating for myself, nothing changed. I sat my A level exams a couple of months later with no adjustments and I ended up with lower grades than I’d hoped. At times it felt like the school considered me a lost cause. They didn’t understand migraine at all; they seemed to just be interested in whether I was physically present in school. I feel really proud to think that despite the odds being stacked against me, I am now studying law at university, something my school probably never envisaged for me. Still, I feel so angry and sad when I think of how much less stressful things could have been if I’d had support in school.

Small things can make a huge difference, and now I feel so much more supported

Now that I’m at university, it’s a totally different experience! When I first started, because of my experience at school, I had no idea of the support that is out there. I spoke to another friend who has ADHD and they told me about the Disabled Students Allowance. I spoke to my academic advisor and they really encouraged me to claim any support that I need. From this, I was able to get a laptop with note-taking software that makes a huge difference to me. I am able to request lecture notes on days I’m not well enough to attend. I can also apply for extensions to deadlines if I need to, which reduces some of that anxiety around exams. With the impact of migraine on mental health, knowing that I can reach out for mental health support and be able to talk to someone is so reassuring too. It just shows me that pretty small things can make a huge difference, and I feel so much more supported.

There is support out there

To others experiencing migraine, I would say that although it can feel like you’re going through this alone sometimes, there are more people than you think that live with migraine and that understand. There is support out there, and I’m so glad to know that The Migraine Trust are working to raise awareness of migraine.

If you need support with migraine in education, our Migraine in Schools and Migraine in Higher Education toolkits have more information. You can also check out our Q&A on managing migraine in higher education for examples of how schools and colleges can support you, and what to do if they don’t.