Why migraine awareness is important to me…and millions more in the UK

Today marks the start of Migraine Awareness Week 2014.

If you know me (in real life or online), you probably know I am a migraine sufferer1. I had my first migraine 20 years ago, at the age of 12. I was sitting in Mr. Baddeley’s English class, reading from Call of the Wild (I hated that bloody book), when I noticed the words were starting to disappear from the left as my eyes scanned the page. I remember briefly wondering whether I was going blind – my eyesight is pretty terrible so it seemed plausible – before zigzags of light appeared and I was overwhelmed by nausea. I was taken to the nurse’s room, where the nurse suggested I was trying to bunk off, and I vomited into a bucket until my step-dad could come and collect me. He and my mum – a long-time migraineur herself – recognised it as a migraine straight away. I can’t tell you how many days I’ve lost to the condition since then.

I am one of 8 million people in the UK living with the most common but regularly misunderstood neurological condition: migraine. That’s why the work that The Migraine Trust is doing – not just during Migraine Awareness Week but also through their awareness raising and advocacy work throughout the year – is so important. Because, despite the fact that so many live with migraines, people continue to underestimate its impact on migraineurs and their families2, to dismiss it as malingering, as “just a headache”. When, in fact, it is utterly debilitating.

My mum and I were recently discussing the advice we’d give to a young relative who has just started having migraines. My mum joked, “Make sure you get a job in local government and have an understanding boss”.

It’s only half a joke really. I know I’m lucky to have employment terms and conditions that allow me to take time off with full pay when I have a migraine and I like to think I repay that in hard work and loyalty3. If I worked outside local government or had a boss with the same attitude as my old school nurse or I was self-employed, migraines would make my working life much more difficult. As it is, I hate phoning in sick, imagining my colleagues rolling their eyes at Jennifer having a migraine again. Here’s the truth: I’d far rather be at work – even on the most stressful or most boring day – than at home with a migraine. When I’m off sick, I am not putting my feet up in front of the telly or reading a book. I’m either in bed with the curtains closed, unable to move, or I’m in the bathroom with my head down the toilet.

But migraines respond well to self-management. Over the years, I’ve learnt to understand and recognise my migraine triggers (for the record: hormonal changes, dehydration, hunger, tiredness, alcohol, salt, MSG) and I’ve been able to reduce migraines by eating and drinking regularly and sensibly and, sadly, cutting out alcohol (almost) entirely. I also sought a second and third and fourth medical opinion and finally found a GP willing to let me try different medications until I found one that has profoundly changed my quality of life. These steps mean I have fewer or, at least, less severe migraines and take fewer sick days than I did a few years ago.

The thing is, when I do have to take a day off work and I return to record it on my employer’s online system, I type in “migraine” and the system helpfully autocorrects to “headache”. So much for understanding…

A migraine is not the same thing as a headache. With a migraine, you might get a headache (some people don’t, actually) and, if you do, it’s likely to be excruciating. But there’s so much more to it than that. Migraines differ from person to person but here’s a quick run down of what a migraine means to me (in order of appearance):

  • Visual disturbance – mostly flashing lights in the corner of my left eye these days.
  • Slurring / loss of words – remember the American reporter who suddenly started speaking gibberish on air? That was possibly transient aphasia and some people report it happening during the early phases of migraine. Mine is nowhere near as extreme as that example but it’s still quite frustrating when it happens in the middle of an important meeting.
  • Clumsiness – I usually have a lot of bruises after a migraine.
  • Vertigo – this is quite a recent one for me. Migraine is a gift that just keeps giving, eh?
  • Severe headache – so painful, I feel sick when I move my head and even the pressure of a lovely soft pillow can hurt. Here’s a video by The Migraine Trust which sums it up for me (just a warning, I find it quite upsetting) – https://www.youtube.com/watch?v=UKTo-OuKhKg&list=PLH9IgWYN7oCXhp9oi3OJtPHkMpWXGMjrb&index=5
  • Nausea and vomiting – oh God, the vomiting. I hate this more than any other part of a migraine because it just doesn’t stop. Every 20 minutes or so (whilst awake) for 2-3 days, unable to keep down even a sip of water. By day 3, the symptoms of dehydration are almost worse than the migraine itself. Thanks to my current medication, I haven’t vomited for almost a year and I’m not exaggerating when I say it’s changed my life.
  • Hangover – this is known as the postdrome phase and it is exactly like a hangover, without any of the fun of being drunk beforehand. Also, things like news reports or soap operas will make me cry hysterically during this phase.

It sounds awful, doesn’t it? It is a lot worse than that for many people. Some people experience the things I’m describing (and more) several times a week. It dominates their lives. I can’t imagine it, to be honest.

That’s the reality of migraine. That’s why it’s important to raise awareness and increase understanding of migraine: to help those of us living with it to access the best support and medication and to learn to manage it as far as we can and to ensure we are not excluded from education or employment as a result of the condition.

For more information, The Migraine Trust’s website is well worth a visit: http://www.migrainetrust.org/.

1 Many people dislike being described as a “sufferer”. I prefer it because I am and I do. So you’ll note that, when I’m talking about myself, I will say “sufferer” but, when talking about others, I won’t.

2 My husband has to live with my migraines too. His plans are cancelled when I’m too ill to get out of bed, he has to creep about the house when I can’t bear the smell of his dinner cooking or the sound of the TV. It sucks for him too.

3 I am not up for a debate about local government employment terms and conditions, by the way.