People often ask what it’s like to have migraines but I find it difficult to find the words to describe such a strange collection of sensations and experiences. Officially, migraine is a neurological disorder that affects the brain and nervous system. Unofficially, I like to think of it as a ‘Brain BSOD’ (Blue Screen of Death in computing terms – I’m not sure if that’s official or just banter from some of my friends who work in IT but I think it fits nicely so I’ll use it anyway). A BSOD is a system error, a crash, a ‘computer sez no’ – or in the words of wikipedia ‘an error screen displayed after a fatal system error’.
I guess it’s the same with any part of our bodies – until they stop working we don’t appreciate what they do. Most bits of our bodies have one or maybe a few functions, so if something goes wrong, it affects one or a few of the things we’re able to do. But a migraine is basically a brain going wrong. And the trouble with brains is that they appear to be involved in quite a lot of what goes on in our bodies. So when a brain stops working as it should, it affects all sorts of things in all sorts of weird and wonderful ways.
When a migraine strikes, things start to smell different, taste different, feel different, sound different. Things look different: startlingly bright lights appear out of nowhere; silver fish dart around; my field of vision breaks up into zigzags, or into little pieces that float away; I can’t focus properly; I know I’m seeing something familiar but I can’t process it at all; my eyes become so sensitive to light that I want to physically gouge them out. I want a hug but my skin feels so sensitive that it feels like I’m being scratched with a rusty nail. A friend has cooked spaghetti bolognese for tea and I’m so grateful and I know what it should taste like but instead it just tastes metallic. I know you’re speaking to me but I can’t process any of what you’re saying.
Then it affects my stomach and my digestion shuts down, or it speeds up: neither has pleasant consequences. I feel extremely nauseous, though I’m eternally grateful that I’m rarely actually sick.
At the same time I feel dizzy – sometimes my sense of balance is affected, sometimes the room spins, sometimes I feel spaced out, sometimes I feel totally disorientated, like the world’s just flipped upside down.
I can’t think straight; I can’t concentrate; my words get jumbled up, or I can’t find words at all; things that I can normally do automatically suddenly drop out of my capabilities, like writing or spelling (I’m a stickler for spelling and grammar so that really bugs me!) and I forget simple things like which cupboards things live in in the kitchen. It’s like a thick fog descends on my brain and it feels like I’m wading through treacle at the same time.
I also have ‘black holes’ in my memory for things that have happened while I’ve had a migraine (e.g. events, conversations), as though my brain can’t lay down new memories when it’s in certain migraine modes.
Sometimes my legs and arms don’t work automatically anymore so I have to consciously tell them what to do, like how to walk up the stairs or how to open a door handle.
I get pins and needles in my hands, arms and face, almost always on the left hand side; they often then go numb and I can’t move them.
Then, of course, there’s the headache. It’s usually a thumping, pulsing pain on my left temple that spreads out like an earthquake epicentre. While the headache can be profound, I think I prefer experiencing this pure, straight-forward pain than all the other bits that make up the migraine and make it feel like something really scary is happening.
I’ve finally got used to all these different sensations and experiences enough to know it’s a migraine and to tell myself I’m not dying or having a stroke or something, but a bad attack can still be terrifying.
So that’s a migraine.
And chronic migraine is what happens when you have migraines over, and over, and over, and over again, without a break in between. After a while, your head gets so used to hurting that other parts decide to join in, so you get lots of different types of headaches, in different places, at the same time. These ever-present headaches range from the annoying to the excruciating.
Sometimes it seems like a migraine wave where one comes, then another, then another. At other times it seems more like a migraine mash-up, with all the symptoms of migraine jumbled up and occurring randomly.
There’s no let-up, the best you can hope for is to just have one or two symptoms rather than the full whack. Every day feels like riding out a different storm, sometimes something specific, like being too dizzy to stand up or not being able to see properly, at other times it’s more the sheer exhaustion of fighting everyday to achieve even the simplest of things.
Above all, it’s a general and overwhelming sense that something is profoundly wrong.
On and on, for months and months.
The good news is that after a while it starts to become normal, and you forget what it feels like to not have a migraine.
Then every so often you get a good hour, or two (I had six in September) and you realise that this is not how life is supposed to be.
According to The Migraine Trust, the World Health Organisation places chronic migraine in the same disability category as quadreplegia, dementia and acute psychosis. It’s classed as more disabling than going blind or losing the use of your legs – which is something I try to remember every day, to inspire me to go for a walk, to look at something beautiful and to be thankful for all the things I do have.
So that’s where I’m off to now: to Williamson’s park, in the sunshine, to see the view over Morecambe Bay and the Lake District. Perfect.
What next? My Story – Part 1