THE ARTICLE
What I wish people knew about migraines (and what everyone always gets wrong), by Jocelyn Doyle
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It’s 2pm and I’m in my local Dart station wearing sunglasses indoors like a knob. I ask the man behind the desk to refund the ticket I bought 10 minutes ago, but the words come out slurred. Avoiding my gaze, he says he can’t. It’s becoming difficult to speak. The left side of my body is going numb, and this includes half of my face, lips, tongue. I can see pity in his face as I give up and walk away. He thinks I’m drunk, and so does everyone else in the station.
I got my first migraine when I was 13, within weeks of my first period. When my mother opened the curtains to wake me for school, I yelped. The slanting winter sun pierced my eyes like a thousand needle points and half of my vision was gone, obscured by swirling purple spikes. My head lurched as I tried to find the words to describe how I was feeling. I felt like throwing up. I felt like my head would burst from the pressure. I felt like dying. “Oh,” Mum whispered as she closed the curtains. “You’ve got a migraine, love.” Her first one arrived when she was 17. She thought she was having a brain haemorrhage.
Migraine is fairly common — affecting 12-15% of the Irish population — but so misunderstood. Here are some things I’d like non-migraineurs to know.
It’s not a headache.
Migraine is a neurological disease and not the same thing as a headache. I’ve heard people say things like, “When I get migraines, I just need to lie down for 10 minutes and then I’m grand,” and “D’you have any paracetamol? I have a migraine.” I’m a headache person too, so I know those can be vicious in their own right, but neither a nap nor paracetamol will touch a migraine. These are the same people who will tell you they have the flu when they have a head cold. Colds can be horrible, but the flu is a whole other animal.
It affects your whole body, not just your head.
The WHO lists migraine as the sixth most disabling illness on the planet, and it’s a whole-body experience. For me, the visual disturbance (aura) — the first harbinger — arrives about an hour before the pain creeps up my neck and settles behind one eye, where it will pound for the next two days before fading to a dull, manageable ache. I sometimes have stroke-like symptoms: loss of sensation down one side of my body (hemiplegia), slurred speech and the loss of basic word skills (aphasia). As a writer and linguaphile, this last can be extremely frustrating. During one attack, I had prosopagnosia — the inability to recognise faces I know — for an hour and a half. It was downright terrifying.
I also get a hideous sensitivity to light, and even the tiniest sound rips violently through my brain. I don’t often throw up if I can control my environment, but that’s impossible to guarantee because I can’t predict my next migraine. If I smell anything chemical — perfume, cigarette smoke, air fresheners — early in the attack, I might vomit (another situation in which people assume I’m an alcoholic), and the pressure from that only exacerbates the head pain. The exhaustion that floods my body makes it a real challenge to finish a thought, let alone a task. My brain feels leaden, fogged, short-circuited. At my worst, I have been unable to move for 17 hours.
These are a small fraction of possible symptoms. I think one of the reasons that migraine is so misunderstood is that it’s so personal — no two migraineurs will have the same experience.
We’re not faking it.
I have a full-time job and a social life, but it’s not always easy. There are times when I can’t function on even a basic level. Conversely, there have also been many occasions where I have — exhaustingly — pretended to be fine because there was some event I couldn’t miss, or simply because I get so, so tired of saying “I can’t, I have a migraine.” I have been saying those words for 23 years. Acting does no good, unfortunately; I’m usually guaranteed a follow-up attack if I don’t take care of myself, and the cycle continues.
If you’ve never had a migraine, please know we’re not faking it, or exaggerating. We are doing our absolute best to get through each day, and sometimes you won’t even know that we’re suffering. Sometimes we can’t bring ourselves to admit it’s happened again. We’re tired of being pitied or sick of being disbelieved. I know having a migraine sufferer in your life is frustrating because there are times when we simply cannot meet you in the pub, or finish the working day, or make it to your child’s birthday party. Just remember that we, too, are pissed off. This isn’t where we saw our lives going, lurking in the silent shadows like reluctant, powerless vampires.
Yes, I have tried that.
Please, please stop telling migraine sufferers about the herbal remedy your aunt’s hairdresser swears by. If someone gets migraines, and you don’t, I guarantee they know more about it. They’ve done the research and spoken to their doctor. They’ve read books. They have Googled. They have tried all of the things. In recent years, I’ve learned that a steroid injection into a nerve in the back of my neck (called an occipital nerve block) can give me months of respite. Before that, I was on a daily cocktail of turmeric, feverfew and amitriptyline, used to treat depression in higher doses. Before that it was beta blockers, traditionally used for high blood pressure and heart problems. I’ve tried changing my diet and taking magnesium and regulating my periods with non-contraceptive hormones and none of it has made the slightest bit of difference.
Stop judging.
I’m not sure why, but non-migraineurs seem to feel entitled to judge what I should or should not be doing with a migraine. “Well, you should probably stop drinking that wine then,” is a good example. (One: I don’t have food or drink triggers. Two: even if I did, I already HAVE the migraine, so what do you think is going to happen? And three: if my head was about to implode after this glass of Shiraz, WHAT BUSINESS IS IT OF YOURS?) Speaking of which…
… not everyone has food triggers.
Yes, some people are brought down by red wine, chocolate or orange juice. (I have a friend who has to scrupulously avoid even a square of dark chocolate in the week before her period, or she will immediately be hit with an attack.) Not every migraineur, though. I spent years faffing around with food diaries, and to date the only ingestible trigger I‘ve identified is American cream soda, that sickly-sweet fizzy drink I was briefly partial to in my teens. Not exactly a big hole in my life. Also…
… asking me why I got the migraine sometimes feels like an accusation.
Does it make you feel better to know that I’m PMSing, or that I’ve had an unusually stressful few weeks? Are you left dissatisfied if I can’t tell you the cause of this particular attack? I realise most people who ask are doing it out of genuine concern, but it can feel like I’m being made to explain myself — as though I need to confess whatever awful thing I’ve done to bring this down upon my head.
It’s a lot of work.
There’s a lot involved in having migraines. I keep a detailed diary of every attack for my doctor — severity, symptoms, length, potential triggers. I can’t leave the house without ensuring that I have everything I need if a migraine strikes. There are trips to the pharmacy, the GP, the neurology department. I worry that the painkillers are destroying my insides, and I go without as often as I can because it’s easy to develop dependency headaches. As a migraine sufferer, I am significantly more likely to suffer depression, anxiety and stroke. I can’t take birth control containing oestrogen because, with the type of migraine I get, I could get a blood clot to my brain. And you know what’s scary? I’m by no means at the most severe end of the scale. I read horror stories online that make mine sound like a doddle. I’ve never had to go to A&E with a migraine. But I have missed school, work and plenty of happy occasions. I’ve missed a lot of life.
In many ways, suffering from migraine makes you a fighter, simply out of necessity. Just making it through to the end of a migraine day is an accomplishment in itself. I’d love to see a cure in my lifetime; I don’t expect to. In the meantime, we’ll keep battling our way through every long, painful minute where the ticking of the clock rattles, heavy, through our skulls. Please give us the space, means and understanding to keep on fighting — and take a second to think before you judge that stumbling, slurring girl in the sunglasses.
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