Flashing lights, numb hands, hearing loss – migraines are more than just a very bad headache. Long-term sufferer Corinne Redfern tells her story, and reports on new treatments and ways of coping...
The first time I heard someone describe a migraine, I was approximately 68 minutes and 21 seconds into watching the life-definingly amazing film Coyote Ugly. ‘My entire body starts shaking,’ explains Piper Perabo’s character Violet Sanford, as she pulls a lavender cardigan over her head and balances improbably on top of a Casio keyboard. ‘And then everything gets… a bit… cloudy.’ ‘That’s me!’ I thought – 13 years old and failing to notice that Piper didn’t appear to be whimpering with pain or curling up into the foetal position. ‘Finally, someone else gets it!’
Despite supposedly being paid to communicate, I’ve always struggled when it comes to talking about migraines. Probably because they’re just so weird. First, my hands go icy cold and numb – sort of like you’ve fallen asleep on them in the night, with the windows open, in the Arctic Circle. Then, I lose my vision (nothing funny about that, so let’s move on). My tongue feels thick and heavy, and my hearing becomes disjointed – voices (including my own) feel distant and strange, like they belong to people who are speaking very, very slowly, through a dry-stone wall. It takes about 45 minutes for the pain to kick in, which, in case you were wondering, is just enough time to bolt out of a meeting, stick a pallid face around my editor’s door explaining that I ‘have to go home immediately’, and bash at the Uber button on my phone screen with my thumbs. But if the driver gets lost, I’m screwed. By that point, I’ve lost the ability to talk.
‘Migraines affect 15 per cent of the British population,’ explains Rebekah Aitchison, spokeswoman for Migraine Action. ‘And women in their twenties and thirties definitely make up the largest demographic. We tend to find that many women experience their first migraine during adolescence – which isn’t surprising, because studies have shown they can be triggered by hormones – but that’s not always the case. Similarly, some women find that their migraines get worse during the menopause, or pregnancy – and others find that theirs disappear altogether during or after that. There’s no rule of thumb, except that they tend to be genetic, and can be quite scary.’
Brain pain and flashing lights
If you’re looking for a straightforward rundown of how migraines work, I’m sorry to disappoint you – it doesn’t exist. Experts still don’t know exactly what triggers them, or why some people get them and some don’t. Everyone has different experiences – the only constant is that it is never ‘just a headache’. There are always accompanying symptoms.
‘Migraines are considered to be one of the most disabling conditions in the world, just behind epilepsy and schizophrenia,’ explains Rebecca Salt, a specialist headache nurse with over a decade’s experience in the neurological disorder. ‘You do often find that they mimic a stroke – numb hands, dizziness and a sudden inability to understand what people are saying, for example – which can be particularly terrifying the first time you experience it. And one of the most common warning signs sufferers report is seeing flashing lights when a migraine is about to hit.’
Dealing with ‘auras’ and ‘postdromes’
Known as ‘aura’, those lights have come to fill me with dread. (To such an extent that I’ve recently made a concerted effort to avoid camera flashes because the ‘flash blindness’ I experience afterwards so closely resembles it.) Aura is accompanied by such strong feelings of disassociation that, for me, the pain that follows is almost a relief; it’s something tangible, physical and specific. When you need help, people understand pain. They don’t understand everything else.
Unfortunately, they don’t necessarily relate to the extent of the pain. ‘I have a disability that means I regularly dislocate my joints,’ explains Sarah Wilson, 29, from Northamptonshire. ‘So I consider myself to be pretty tough. But migraines reduce me to tears – they are absolutely agonising. Nothing annoys me more than when people say they’ve got one, then they take a paracetamol and go to work, or head to the pub. When I have a migraine, I cannot move. I cannot sit up. I cannot watch TV to pass the time. I just lie there in the dark, trying not to sob.’
At least when the pain passes, the migraine is gone, right? No. That would be way too easy. ‘Many of my patients report suffering from a migraine ‘hangover’ of sorts, which can last for two or three days, and leaves you struggling to function,’ explains Salt, adding that this period is known as the ‘postdrome’. ‘Even if you’re no longer seeing flashing lights, your vision can feel impaired, and focusing on a computer screen can be almost impossible.’
For Fran Kelly, 23, this is one of the worst things about migraines. ‘They just go on and on,’ she says, explaining that while she used to get two or three migraines a month, she now gets two or three every week – forcing her to leave her job in a London theatre, register as disabled and move home to her parents’ house in Wales. ‘It’s not so much a matter of the pain as the build-up and aftermath. All of my senses become confused – I’ll see a smudge on my glasses and won’t know if it’s dirt or just my vision playing up, and everything will smell like it’s rotting. I’m almost never without aura any more, and one side of my body always feels weaker than the other.’
Salt advises against pushing through the postdrome. ‘Even if you only get one migraine every six months, you need to pace yourself. I often see people rushing back to work after the pain ends, only to find that they’re exhausting their body to such an extent that another one comes on almost immediately.’
Her words strike a chord – my migraines are often triggered by stress, and a couple of years ago I experienced two in a row, the first hitting midway through a meeting (word to the wise – legging it out of a boardroom with the words, ‘I can’t see!’ will do wonders for your professional reputation). The second occurred 45 minutes into my commute back to work, after less than a day’s absence.
Miracle piercings and magic cures
Bafflingly, despite its pervasiveness across the UK, no drugs have been specifically developed for migraines since the early 90s. Instead, all medication is ‘borrowed’ from other fields and only helps to alleviate the symptoms, rather than preventing them altogether. So, in terms of treatment, it’s a matter of trial-and-error until you stumble across something that works for you – be it medicinal or merely therapeutic.
As a result, solutions are varied, and often err towards the alternative. Salt enthuses about neurostimulators, which use light electrical currents to stimulate certain neurons in the head and the neck, and Wilson swears by those cooling gel strips that you place on your forehead to soothe the aching.
I’m between Triptan prescriptions, but so far, the only thing that clears the Coyote Ugly fog is half-flat Coca-Cola.
Meanwhile, Kelly has ‘tried everything’ to no avail. She recently started getting Botox injections in her forehead to ease the symptoms, which ‘helped to a certain degree, but now seems to be making them worse’. She’s also having acupuncture, which she says is the first thing to have a tangible impact. ‘It doesn’t alleviate the pain, or prevent migraines themselves,’ she clarifies. ‘But it seems to have a marked effect on my energy levels, which makes recovery faster and easier. I was sceptical at first, but I’m so desperate, I’ll try anything. I even got a daith piercing through the cartilage in my upper ear, because forums on the internet said it’s a pressure point and might help.’
It’s a bizarrely antiquated approach to a disorder that migraine-treatment producers Imigran Recovery claim is cited as the reason behind the biggest number of sick days in the country. But neurologists believe change is on the horizon – and that they may have finally identified the hypersensitive nerve system behind the migraines, potentially attributing the disorder to ‘overly active’ cells in the ‘trigeminal ganglion’ (no, me neither). It’s thought that imbalances in your serotonin levels could also be a factor. Now, if trials prove successful, they could have medication approved as soon as next year. ‘The progress that’s being made is long overdue, but really exciting,’ says Aitchison. ‘I look forward to a time when we can prevent migraines altogether – rather than just attempting to stop them in their tracks.’
If you suffer from migraines and want support – or just more information – contact the Migraine Action helpline on 0845 601 1033, or visit migraine.org.uk.