What it’s like to be a young person with migraine

Ivy’s experience

“I grew up being ‘the girl with the headaches’. It was something that everyone just knew to be true about me.

“I’d cover my ears when the other children got too loud, I asked to leave rooms if there were bright flashing lights, I avoided chocolate because I knew it was a trigger long before I knew the word itself, I missed lessons, and had days where the pain was too much to even come into school. But I was never diagnosed with migraine.”

Going to school

“I was fortunate enough to have attended a very small school when I was a child, so the teachers were able to deal with my situation in the way I believe it should have been handled. If my head hurt I was allowed to lie down in a quiet room, and if my symptoms didn’t clear then they’d call my mum to pick me up, otherwise I went back to class.

“Nobody ever really questioned my symptoms and I think that was important. They accepted that what I said about how I felt, even at such a young age, was the truth and acted accordingly.

“I’m pretty sure now that it was migraine, but the doctors we saw at the time told me and my family that we had nothing to worry about. And so we didn’t.”

Medical help

“At the beginning of year 11, autumn 2017, I started to realise that my head was hurting more often than usual. I went to the GP, as I had done numerous times throughout my childhood, but on this occasion, after a bit of back and forth, they referred me to a paediatrician.

“And it was in the appointment with the paediatrician that all my symptoms were finally placed together, to form a diagnosis of migraine. Until then, I don’t think I’d ever been asked questions about light and sound sensitivity so I hadn’t ever really considered it all to be connected.

“I was prescribed preventive medication, given a lot of information to read up on, and told to keep a migraine diary. And it was by keeping this diary that I was able to notice when my episodic migraine progressed to chronic.

“The early part of the following year, just after mocks, is when preparation for GCSE exams kicks into the next gear. The stress level rises among students, ‘revision’ is a word you hear multiple times a day, and things that were once just a date in the calendar are starting to feel more real.

“It was during this time that I was spending an increasing number of days off school. I had blood tests, an MRI scan, tried medication after medication. I battled with side effects and symptoms alongside the guilt of not being able to do as much revision as I would have wanted to.

“I found myself in a vicious cycle of migraine and anxiety, one feeding into the other. I could feel when the next attack was about to start, my ears would burn and I’d quickly reach for some tablets.

“The days I spent in school were often cut short, as the gaps between each attack grew closer together. To date, my most recent symptom-free day can be found in April of that year. Since then migraine has been a daily struggle.”

Impact on my life

“My exams went as well as they could have gone for someone who couldn’t revise or concentrate for long periods of time. But I left school in year 12 when I was 16 years old. It had reached a point where it was difficult to balance managing my illness with my education, so I needed to take a break to focus on my health.

“By this point, I had made the transition from paediatrics to Adult services and was trying new treatments under a neurologist.

“It was difficult watching my friends move on with their lives while it felt like mine had been brought to a standstill. I experienced a lot of dark emotions and had to navigate the grief of losing the life I once had.

“Back then and to some extent still, there was an anger I felt towards the doctors I believed should have spotted the signs sooner. I had been in and out of the GP surgery with the same issue yet it wasn’t until things got worse that I feel like I was taken seriously.

“A part of me thinks that all of this was preventable and that’s been the toughest thing I’ve had to come to terms with.”

Looking forward

“After spending two years getting to know migraine better and how it affects me in my life I returned to education. And I have now come to the end of my time at an online school and in September I will be starting university. I’ll be studying Creative Advertising, a subject I likely wouldn’t have ever heard of had I not taken time out when I did.

“To the best of my knowledge, I’ve done the groundwork to prepare myself for uni. I let them know about my illness, applied for Disabled Students’ Allowance, and so hopefully when I get there things will be smoother from the start.

“My life looks so different from how I ever expected it to but I am excited for the future and looking forward to a day when I can no longer say that I live with chronic migraine.”

An update from Ivy

In my two years at university there have been a lot of lows. I’ve had days where a migraine attack meant having to ask my housemates for help with things like sorting dinner. I’ve walked out of lectures and had to use my extensions due to days lost when I’ve been in pain.

I’m now going into my final year of this degree and I’m glad I took the step to come here. Besides the new people I’ve met and fun experiences I’ve had, moving across the country meant I finally had access to new migraine treatments which have really made the difference.

Though things aren’t perfect all the time, I’m living a life I didn’t think would be possible when I left school at 16. I wish I could tell my younger self, who was afraid of what her future with migraine would look like, just how much she’s been able to achieve.