Over the past six years, Home Office minister Rachel Maclean has had such devastating migraines that, at times, she’s had to rush out of parliamentary debates to be sick.
‘I’d often have to do things such as lock myself in a loo cubicle just to get five minutes’ rest before I went back into a debate or a meeting,’ says Rachel, 55, Conservative MP for Redditch who is married with four children.
The migraines would cause not just nausea and sickness, but also ‘vice-like’ pain in her head during attacks that lasted up to 36 hours and would hit her three or four times a week.
‘Sometimes I had a sensation of drilling inside my skull, especially if I was moving around,’ she says. ‘It was horrible, but there was nothing I could do — I just had to take whatever painkiller I could.’
For days afterwards she would be hit with debilitating exhaustion and brain fog — yet she put off seeking medical help for two years, telling herself that, as she was newly elected as an MP, it was ‘normal to have headaches when I was so stressed and tired’.
Over the past six years, Home Office minister Rachel Maclean has had such devastating migraines that, at times, she’s had to rush out of parliamentary debates to be sick
Many struggle through as Rachel did. A new report from the Migraine Trust charity ‘Dismissed for Too Long’ has found that almost one in four people with migraines wait more than two years from the onset of symptoms to seeking help, even though for many the symptoms will be debilitating enough to stop them living life as normal — and there are now newer treatments that can cut the number of attacks.
As Rachel discovered, she now has monthly injections that are having an ‘incredible’ effect.
One of the reasons she delayed seeking help was because she was convinced that she was ‘just’ having headaches, as she believed migraines cause only one-sided pain, a common misconception.
‘In actual fact, only two-thirds of migraines are one sided and only 25 per cent have visual disturbances and only 70 per cent have nausea,’ says Peter Goadsby, a professor of neurology at King’s College London.
‘The distinguishing feature of migraine is that it is a headache plus something else — this could be nausea, aura (i.e. visual disturbances, noise and light sensitivity) or brain fog — but you don’t have to have all of them.
‘The other characteristic is that a migraine stops you doing things, whereas with a tension headache you can carry on.’
The migraines would cause not just nausea and sickness, but also ‘vice-like’ pain in her head during attacks that lasted up to 36 hours and would hit her three or four times a week
Around ten million people in the UK are thought to be affected by migraines. The cause is unclear, although attacks are thought to involve temporary abnormal brain activity that affects blood vessels, nerve signals and brain chemicals.
Migraine attacks can be treated with non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen, and an anti-sickness drug such as domperidone, only available on prescription.
Stronger drugs called triptans, such as sumatriptan, can be effective too, by stimulating the production of serotonin, a brain chemical thought to reduce inflammation and constrict blood vessels. They don’t prevent migraines but help reduce their severity and duration. However, they don’t work for all.
In 2017, when Rachel finally went to the GP, she was given triptans. ‘These took the edge off the pain but took several hours to kick in and left me feeling drugged up and woozy,’ she says.
‘And the day after, it was horrible feeling so drowsy.
‘There were some very dark times. I experienced depression because of the migraines — I felt they were robbing me of my entire life. It wasn’t just my work it affected (although I never missed a vote in the House because of migraines), I’d get the headaches at weekends, on holiday and at Christmas — they didn’t distinguish between work and leisure.
‘It wasn’t as if I could have a few days off and be fine — I couldn’t plan to do anything.’
But now she can, thanks to a newly introduced regular injection. Anti-CGRPs are the first drugs specifically developed to prevent migraines. They work by targeting the CGRP chemical in the brain, which is involved in generating head pain. They block the CGRP and stop it from attaching to its receptors.
Three anti-CGRPs have been approved for use on the NHS in the last 18 months: erenumab, fremanezumab and galcanezumab.
Anti-CGRPs were launched three years ago with much fanfare and hype. Professor Goadsby admits he’d believed the new class of drugs may prove to be less effective outside a research setting (as trials don’t tend to include the worst affected).
‘But I’m surprised at how many people have responded to these drugs who were getting absolutely nowhere with anything else we threw at them,’ he says. ‘Around two-thirds of patients will come back and say the treatment is worth continuing with.’
What’s more, Professor Goadsby says, the side-effects — constipation and injection site issues — are mild. However, anti-CGRPs are only available to those who have failed to control their symptoms with three other treatments and who have at least four migraine days a month.
They must also be prescribed by a headache specialist, such as a neurologist or a GP with a special interest in headaches.
However, few parts of the country have specialist headaches services at all — these are specific headache clinics with a neurologist specialising in migraine or a GP with a special interest in headaches and specialist nurses.
In reply to Freedom of Information requests sent by the Migraine Trust in May this year, only 13 out of the 128 health trusts in England that replied confirmed they ran a service. In Wales, just three out of seven boards had them.
For Rachel, the anti-CGRP drug has had huge benefits. ‘I was sceptical when I first heard about them, but they have been incredible,’ she says. ‘I’ve only had two or three migraines in the five months I’ve been on the drug — which is a massive improvement.’
However, there is a catch. The drugs cost around £4,800 a year per patient — although the NHS has negotiated confidential discounts with each pharmaceutical company — and patients are still finding them difficult to get on the NHS. Rachel managed to access them through the National Migraine Centre charity in London, which runs clinics for the general public.
She went there and a doctor offered to prescribe the injections, after beta blockers (normally used to treat high blood pressure, these are sometimes repurposed to treat migraines because they reduce blood vessel dilation, known to contribute to them) and other painkillers, as well as the triptans, had no effect.
‘I’m not paying anything like £5,000 a year,’ says Rachel, although she won’t reveal exactly how much.
‘I understand the position the NHS is in… but obviously in an ideal world the people who desperately need it should be able to access it.’
Some areas of the country are being slow to introduce the new jabs, it seems. ‘Waiting lists for the NHS are very long,’ says Dr Katy Munro, a GP from the National Migraine Centre.
Rachel is speaking about her experience now not just to highlight the treatment options available, but also to highlight ‘the massive amount of stigma surrounding migraine’.
‘One of the worst times was when I had to cancel a meeting with local businessman in my constituency an hour before, as I literally couldn’t get out of bed due to migraine,’ she says.
‘The next time I saw him at a function he said in front of at least 15 people that I hadn’t gone to see him because I’d had a “headache”.
‘We need more sympathy and specific policies to support people with migraine at work. People need to realise that migraine isn’t “just a headache” but can be a completely disabling condition.’
migrainetrust.org