“English, which can express the thoughts of Hamlet and the tragedy of Lear, has no words for the shiver and the headache. It has all grown one way. The merest schoolgirl, when she falls in love, has Shakespeare or Keats to speak her mind for her; but let a sufferer try to describe a pain in his head to a doctor and language at once runs dry.”
Virigina Woolf, On Being Ill, 1926
One of the most frustrating aspects of living with migraine is that no one else can see it. I've attempted to dramatize a migraine in my Introduction page, mainly to evoke and hook in readers. But over the years I’ve so often wished that my leg would turn green and fall off during a migraine, not because I crave sympathy, but because then I wouldn’t be thought a neurotic hypochondriac. It would also solve the problem that Virgina Woolf, a migraineur, rather eloquently points out: that describing one's pain and illness is an impossible task. But it is one I nevertheless set an array of migraine and headache sufferers. I asked them to tell me what their migraines felt like. Their responses reveal not only what an individual and varied condition this is – but what a very real one it is. Even if no legs turn green and fall off.
I think Virgina Woolf would be most impressed.
“Every single morning I wake up with pain in the left side of my head. It feels like a vice has been attached to one half of my head and it’s being squeezed tighter and tighter, as the day goes on the right side joins in. This then feeling like a tight belt has also been wrapped around my forehead and is being pulled tight. I get this every single day but in addition to this, usually 3-5 times a week, I get a migraine attack too. This feels like someone has buried a chainsaw right into the left hand side of my head!!!”
Mandi Howard, aged 45, Hemicrania Continua, New Daily Persistent Headache and Chronic Migraine sufferer since July 2010.
Fran, aged 28, aka Skulls and Ponies, very bravely taped herself on the verge of a migraine and described not only how it feels but how she treats attacks. Check out her blog for other useful migraine posts. Fran has suffered with migraines for 8 years.
Migraine Movie from Fran Swaine on Vimeo.
“It's like having a black cloak around my head, a heavy, throbbing haze of confusion, pain, clumsiness and vertigo which can vary from leaving me wobbly to stumbling around, or having to lay completely still and unable to care for myself. I have the most bizarre auras, tinnitus, double vision, facial/teeth pain, ear ache and absences which I can only describe as something similar to silent epilepsy. Some days I find walking more than a few meters impossible, I am so exhausted by the pain. It isolates you physically and emotionally but it still remains an invisible illness.”
Annie, aged 43, Chronic with Basilar & Vestibular Migraine.
Migraines commenced at 12 years old.
They began out of no-where when I was around 17 as a once a week, want to blow your head off with a shot gun, puking everywhere, kind of deal. Then they transformed into something less severe but more common, eventually becoming something I had to feel every single day.
Imagine those little toy wind up monkeys that bang symbols together. Imagine that sound from the moment you wake up every day of your life, to the moment you go back to sleep. I don't really get sensitive to light anymore and I'm fairly strong now so I still try to get on with my life but the one thing you can't avoid when out is babies and little kids screaming and crying, it makes me think my head might actually blow up, especially if I can't escape like when I'm waiting to see the doctor, it's unbearable.
In my last job a colleague thought it was funny to hit his keys on my desk every time he went past thinking it wound me up, I tried to tell him it wasn't winding me up - it was hurting me, but it didn't seem to make a difference to him. I think it's high-pitched sounds I really, really can't cope with.
Maggie Austin, aged 24, Chronic Migraine Variant Without Aura. First migraine 7 years ago.
Occipital Neuralgia feels like something has the nerve near the base of my neck and is slowly twisting it as tightly as possible through a mangle which has tiny nails all over it, and makes you feel like both sides of your head are caving in very slowly and your eyes are being pushed together! Trimeginal Neuralgia, for me, varies. On a low pain day I just get a constant feeling of a dull pain on the left side of my face and it’s the whole left side, teeth, ear, cheek and eye. But on a high pain day, it’s like someone has sewn a long icicle into my cheek that wont melt and just gets colder and colder and more painful and the stress it causes makes me chew the inside of my mouth so I have holes inside my cheek that are also sore.
With my migraines, I feel I have two. The first one goes right across my forehead like a skin tightening feeling, and it feels rock hard and this is the only migraine I get where I feel very sick and do actually throw up. Blinking and any movements of my eyes hurt and makes the pain worse. The only thing I can do is sleep to not make it worse. My second migraine, my big migraine if you like, only appears on the right hand side and sometimes where the pain is so bad parts of my head, the size of a small tomato, swell up and a lump will appear and I am unable to lift my head off my pillow and feel very dizzy. My head feels 100 times heavier than what it is, but the pain I can't quite put my finger on. It can feel like very sore pins n needles and that I have taken a large whack to the head several times. Almost like a concussion!
Mel Browning, aged 40, Occipital Neuralgia for 3 years, Migraine and Trigeminal Neuralgia since February 2012.
“I feel like I’ve had a stroke. I can’t move my right hand side at all, I can’t even speak properly. I am helpless. Then there is the pain – it is shooting, stable, shooting, moving around. One moment it is on the right side of my head, then the left, then the back of my head, and all the time I have this heavy numb feeling down my right.”
Basilar Migraine sufferer for 5 years.
During a migraine I feel very drained and tired and all I can think about is lying down and trying to sleep. My head feels really heavy and my neck can no longer support it so if I’m not lying down, I am normally leaning my head against anything handy - walls, desks, tables, lamp posts etc. It feels like my brain is expanding, there is so much pressure on my skull. I find it hard to have my eyes open, they feel dry, my eye sockets hurt and bright lights feel painful. My brain stops making connections. I feel stupid and slow and find it tiring to talk. I feel completely spaced out and it feels like things are happening around me but I’m not really part of the real world. I am very sensitive to noise and smell and can often feel dizzy and nauseous. My whole body feels very sensitive and achey, similar to when you have the flu. I often have freezing cold hands and feet but a really hot head so ice packs and hot water bottles are simultaneously used. The only thing I can do when I have a migraine is hide away from all stimuli and lie down in a dark room away from sound, light and distraction and just wait it for it to pass. Sometimes I can sleep, but sometimes I just lie there in a zoned out state for hours. When I’m recovering from a migraine I feel like I’ve been hit by a bus and feel completely bruised and battered and very drained and tired.
Fiona Russell, aged 31, 8 years as a Migraine sufferer.
“The first sign of an impending migraine is a slight feeling of unease and disorientation. My limbs then start to feel heavy and tingly and a slight numbness almost imperceptibly spreads up my arms. My mouth feels strangely dry. Then comes the dreaded black spinning penny in my blind spot accompanied by cartoon stars on the periphery and searing, burning sunbeams across my central line of sight. A vice-like grip envelops my head and an amazing volcanic pressure builds behind my eyes. Finally, the blurred vision is such that I am lying at the bottom of a rippling pond looking upwards at the world. There is no option but to hunker down for the next couple of hours. Suddenly everything clears and I am overwhelmed by a sense of energy and euphoria....”
Owen, aged 35, Migraine with Aura for 6 years.
Thank you so much to the lovely, brave migraineurs who shared their incredible stories and descriptions. Next time you meet someone who tells you they suffer with migraine, why don’t you ask them what it feels like?
A migraine is usually made up of 4 phases: Prodrome/Premonitory phase, Aura, Headache and then Postrdome. This is why my task of asking for a simple description of a migraine was a tricky one! Not all migraineurs suffer from each phase - but recognising and understanding them can be crucial in managing migraine.
Coming Up: Next I asked these same migraineurs to show me what a migraine LOOKS like…a brave few took pictures….this time I joined in!
Migraine Awareness Week!
(2-7th September 2012)
If you suffer from Migraine, or any of the other conditions mentioned above, you can find help at:
The Migraine Trust National Migraine Centre
The Migraine Trust National Migraine Centre