I started experiencing migraine attacks at the age of nine, shortly after I began having periods. Back then, my mum didn’t understand why I would suddenly vomit, cry in pain, and become completely unable to function. She would bring me to the hospital in search of answers. When we spoke to the doctors, my symptoms were often downplayed, and we were told to manage them with painkillers. I don’t think anyone truly understood how much I was suffering or how much school I was missing because of the pain.

As I got older, my migraine became increasingly severe. During secondary school, the pain became so intense that I experienced fainting episodes, sometimes multiple times a day. Just physically attending school became a huge challenge. At one point, my attendance was only 52%. The school didn’t try to understand what was happening and what my needs were, Instead, my mum was threatened with a fine, and the school even tried to get social services involved. We really had to fight to be understood that migraine was having such an impact. Eventually, I was moved to homeschooling, which really impacted my social life, and I lost a lot of friends.

Understanding hormonal migraine triggers

I was keen to understand my own triggers. At medical appointments, I repeatedly explained that I believed my menstrual cycle was a major trigger. I didn’t seem to be listened to or taken seriously when I raised this though. Not being heard contributed to my severe depression. There was so much blame and dismissal – it was suggested that I wasn’t taking my medications ‘properly’. I couldn’t help but think that was ironic as for years I had been palmed off with painkillers, which no doubt led to medication overuse headache. Eventually, one of my doctors agreed and explained that menstrual migraine can be particularly difficult and resistant to treatment.

When I got to the start of Year 11, it was suggested that I return to school, in order to do my GCSE exams. I went back but really struggled. We tried reduced hours, but it was still very stressful. At this time, my family was facing eviction from our home and the stress really built up. I sat my exams, and I remember on results day, one of my teachers was shocked I’d even managed to get the grades I got, though just a few years before I was predicted A’s. It does make me sad to think how much migraine impacted my education.

Vestibular migraine diagnosis

I was later diagnosed with vestibular migraine and migraine with aura. My symptoms went far beyond just pain. I struggled significantly with dizziness, balance, coordination and my vision. I would fall frequently, and people sometimes assumed I was simply clumsy when, in reality, I was struggling to balance or sometimes could not see properly because of the migraine symptoms.

The balance problems became severe enough that I needed physical therapy to help me manage them. Vestibular physiotherapy helped with my balance problems for a while but it’s something that is still a struggle for me.

Now in adulthood, migraine has meant I have been unable to work, and I have had to battle to receive the benefits I need. My application for Personal Independence Payment (PIP) was rejected multiple times, and I had to go through a lengthy appeals process. I could hear the confusion and dismissal of the assessors on the phone; ‘oh, is migraine a disability?’ – it was up to me to explain, educate and advocate for myself throughout the process.

While my family didn’t initially understand what was happening to me, they were there with me through all of the hospital visits and the journey to getting diagnoses. They are really supportive: my sisters really help out with so many things – they even help with physical care. There are days when it’s hard, even to shower, things people think are easy.

Self-advocacy is important

To other people with migraine, I recommend tracking your symptoms and triggers. It made a big difference to me and helped me better understand my own patterns. Also don’t be scared to advocate for yourself – you know your body best. Finally, just know that you are not alone, sometimes it feels like not many people understand, but there are lots of us out there who can relate to each other, no matter what type of migraine we have.