Stephanie’s Story: Why is migraine so difficult to describe?

Written by Stephanie for Chronic Migraine Awareness, Inc

I have started writing this so many times. It is so hard to put into words how disabling migraine attack is, without it sounding like a bad headache. I thought long and hard about how I would explain it in this blog. I really wanted you to be able to feel what I am trying to say, so here goes.

It may start off with a small dot in my peripheral vision, barely a noticeable shadow that casts a darkness over my tired eyes. Sometimes it’s more aggressive with flashing lights, and temporary loss of vision. I might feel a sickening in the pit of my stomach, coming from nowhere and catching me unawares, making my mouth water. I might be struck down by overwhelming fatigue that leaves my body feeling laden as though immersed in treacle (molasses). Or maybe my jaw starts to hurt from clenching. I have a pain deep behind my eye that trails up over my skull and down my neck. Maybe my period is due, maybe it isn’t. Maybe I ate cheese, forgetting it is a possible trigger, or maybe I did not.

I take myself off to bed in hopes to recover within hours. Painkillers line my bedside table and I take each one in turn at the first sign of the migraine. I lie down dizzy, and unable to sleep from the pain which has now gotten so bad that all light and noise must be eradicated immediately. An ice pack lies across my forehead not quite reaching the parts that are pained. A few hours pass and I wake up, rush to the loo (bathroom) to be sick, or I sit up and am so dizzy I need to lay back down. I’m shaking, I feel like I’m hungover from 10 Jack Daniels & Coke except even a hangover would be preferable to this attack of pain I am feeling. I am unable to distract myself. The only thing to do is lie there some more; phone in sick, cancel any plans I have made by forcing myself to pick up my phone even though it hurts my eyes as much as looking at direct sunlight. Rattle off a text of apologies for having to cancel again, only to get one back saying, ‘you wouldn’t be on your phone if you had a real migraine, it must just be a bad headache.’

The day passes in a blur, I cannot eat, I cannot sleep, I cannot watch TV or read, and I genuinely wonder how much more of this I can take. What if it never ends? What if today is the day I do not recover from this pain and must live with it indefinitely? I feel shaky, my skin is greasy, and my heartrate has sped up to a rapid crescendo. Anxiety causing the pain in my head to worsen again. The hangover feeling leaves me exhausted, thirsty and drained, so drained. My stomach feels as though I’m seasick and the thought of leaving the house is too much effort.

My doctor advised preventative migraine treatment, so I take four pills every night of my life in hope that it will prevent the migraine occurring at all. I get a daith piercing that promises a quick fix and for a month or so my migraine attacks reduce, but they are not gone. Oh no, they are never gone. When I am tired, when my period is due, when I drink too much caffeine and when I don’t drink enough water and/or miss a dose of those sacred pills. Just about anything can be a trigger to be honest and I wish fleetingly that someone else would feel this pain so they could understand it. It’s impact. The catalogue of symptoms that are so disabling, so soul crushing, so predictable and so much more than JUST A HEADACHE.

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