‘My body went numb – I thought I was going to die’

Ten per cent of migraine sufferers get them on a weekly basis
Ten per cent of migraine sufferers get them on a weekly basis

“That no one dies of migraine seems, to someone deep into an attack, an ambiguous blessing,” writes Joan Didion in her essay ‘In Bed’. It’s a sentiment I truly understand, for I have been plagued by these monstrous headaches for the last 30-something years.

I will never, ever, forget the first time it happened; of course, at the time I didn’t know it was a migraine, I was simply very, very sick and scared witless.

It was a balmy summer’s afternoon and I was 11-years-old, sitting on one of those high wooden stools in science class at school.

As the teacher talked us through the intricacies of cross-pollination, I began to feel incredibly dizzy; my clammy hands clung to the stool in case I would fall off and be horribly mortified in front of my classmates.

The words on the blackboard began to zigzag and ripple; the teacher’s voice sounded like she was speaking through an echo chamber. Pins and needles prickled down the right side of my face, then my body, then it went completely numb. I thought I was dying. There and then. In the science lab.

The teacher must have spotted me turn grey and was soon at my side ushering me to the sick bay where the smell of Dettol flooded my senses and prompted, what I can only describe, as a fiesta of vomiting.

After a short, but seemingly interminable wait, my parents arrived to take me home. And then the headache. A headache that felt like my skull was being drilled by some instrument of torture; crushing, pulsing pain, with no relief. It lasted for days.

I was sick as the proverbial dog; light and sound were intolerable. I lay in bed as still as a stone, my torture punctuated only by pathetic crawls to the bathroom to enjoy the fleeting relief afforded by extremely violent vomiting.

And with that dramatic episode which began in my first year of secondary school, I had become migraineur (the name given to those of us who experience the horrors of this condition).

Three years went past before I had another one of these awful headaches.

If anything, the second time was worse; I was baby-sitting with two friends and it happened again - zigzagging lines, then my eyesight slowly went black, like treacle spreading over my vision. I honestly thought I was having a stroke, but I couldn’t speak to tell my friends what was happening.

The headache afterwards lasted for a full week, tightening around my crown like a metallic Alice band. My mother, herself a migraineur, administered compassion and Paracetomal; the latter had zero effect.

Then there was the summer when I was a student working abroad. I had a headache everyday for three months. No medication relieved the pain. I simply endured it, putting it down to the effects of the bright sunshine.

Migraine can occur in four possible stages, and each patient may experience one, some, or all of them.

First is the prodrome, the period before the migraine, consists of a variety of possible symptoms which seem to have very little in common: irritability, depression, yawning, gastrointestinal disturbance, food cravings, stiff muscles.

Not all patients get this, but it occurs hours to days before an attack, and is often the only warning they get.

I always know when a migraine is imminent. I feel excessively tired and yawn a lot, crave sweet things and stringing a sentence together becomes a Herculean task. I feel spaced out and rendered entirely abject.

The second phase is the aura. This phase can come immediately before or during the actual migraine pain phase, and can consist of visual disturbance (many people talk about blind spots or zigzags), or of other changes in perception, such as a pins and needles feeling.

And then there’s the third phase. The pain phase. This can last from 4-72 hours and includes pain (usually, but not always localised to one side of the head), nausea, vomiting, and intense sensitivity to light or sound.

And finally, after the pain, the postdrome. The symptoms here are less dramatic than the pain, the auras, and the vomiting, but can still impair quality of life.

Instead of pain or nausea there is fatigue, difficulty concentrating, dizziness, weakness, and decreased energy. They don’t sound like much, but patients report a decreased ability to work, decreased interactions with family and friends, and what is often most frustrating, a feeling of cognitive impairment.

Thankfully, I no longer get the aura, but I do get a mixture of all the other symptoms.

No one knows what causes migraine. It’s a strange pile of symptoms: auras, light sensitivity, gastrointestinal disturbance, pain, exhaustion. Some people may exhibit all symptoms, some almost none.

Some feel repetitive pulsing pain, some feel crushing pain, and some have light sensitivity, auras, and vomiting, without any pain at all.

Some people have clear triggers, such as food or smells, that can bring on a migraine. But a food or a smell isn’t a direct cause. It’s only a trigger.

I’m not sure what causes mine - there doesn’t seem to be a rhyme or reason - the classic culprits of chocolate, cheese and red wine, don’t seem to affect me, but I’m sure stress does play a part.

Among the more famous migraineurs are Vincent van Gogh, Virginia Woolf, Elvis Presley, Lewis Carroll, Julius Caesar, Emily Dickinson and Sigmund Freud. Not bad company to keep, though I would be happy hanging out with Donald Trump and Timmy Mallett if this meant that I no longer got headaches.

But by the standards of many migraineurs, I am lucky. I have about 12 attacks a year. When Joan Didion was writing in 1968, she was losing four days a week to her headache.

Ten per cent of sufferers get them weekly, and 14% more than 15 days a month.

Still, when they come, they are shockingly bad.

It really annoys me when someone says ‘I have a migraine’ but is still merrily going about their business. A headache is not a migraine. A migraine is like comparing a sniffle with flu. It is not just another stress headache; it is utterly debilitating.

Light and noise slay me. Smells make me retch. And then comes the headache. I can’t see properly, think coherently or entirely understand speech. It’s a gentle madness. But when I am medicated, these reality wobbles are not entirely unpleasant.

And I can only describe the days after a migraine as euphoric. The release from pain and the hazy migrainous filter is truly amazing.

But I do miss stuff because of them: just recently my Christmas work party, events with my children, programmes I want to watch on television and, often meanings – I can be talking to somebody and will find myself two thoughts behind, my eyes scrunched in concentration as if they are speaking another language.

Over the years I have tried all sorts of prescribed medication, including triptans - the first choice for many migraineurs. For me, they had little effect.

Most recently I have been taking Propananol, a beta-blocker and migraine prophylaxis (preventative), which I take every day. It has made quite a big difference. Over the last four months I have had only one migraine and it has not been as severe as previously.

Other people swear by things like acupuncture and complementary therapies, but they are not for me.

Migraines are horrible and you can truly only understand how horrible if you are also a sufferer, but whatever else they’ve done for me in my life, they have turned me into a stoic, a survivor.

And the intense happiness that comes with feeling better, almost, just almost, makes them worth it.