“The first time I ever remember having a migraine was when I was 21 and I thought I got food poisoning from a spice bag,” says Gillian, 28, who works in marketing. “I was up all night vomiting and there was so much pressure behind my eyes and in the back of my head that it felt like someone was standing on my face.” She dragged herself to work the following day but while on the bus had to jump off in the middle of town to vomit.
After being picked up by her dad and brought to the local GP, Gillian was told that “my blood pressure was the highest he’d ever seen in a 21-year-old and sent me straight to A&E, where I was kept overnight for observation.” She was allowed to go home the next day, once she had stabilised, and in the following weeks was sent to the headache clinic to try and link the migraine back to a cause. Her high blood pressure was ultimately linked to ‘white coat syndrome’ (the stress experienced by doctors) and as her blood pressure has since returned to normal, the cause of the migraines is still inconclusive.
Migraine is so much more than a headache. As Dr Katy Munro, a headache specialist at the National Migraine Centre explains, a headache is a symptom while a migraine is an underlying diagnosis – a genetic neurological condition that affects about 6 million people in the UK. “If you have a migraine, you may have headache, but may also have aura, brain fog, dizziness, nausea, particularly heightened sensitivity to light, sound and movement, and sometimes even touch.”
It’s hard to overstate how far-reaching the impact of migraine is, particularly for women (migraine is reported to affect up to 25% of women vs 10% of men). Yet it is a struggle to get the debilitating effects fully understood. A report published by The Migraine Trust this year found that almost a quarter of people (23%) had suffered migraine attacks for two years before they were even diagnosed. This is in part because they are invisible and dynamic conditions, meaning people underestimate their impact. Professor Anne MacGregor, a specialist in headache and women’s health, tells R29: “It is extraordinary that they are not taken more seriously. The World Health Organization recognises migraine as second among the world’s causes of disability, and first among women aged 15-49.”
A migraine attack can be caused by a number of things adding together to irritate the brain, from changes in a person’s internal environment (like blood sugar, sleep pattern or stress hormones) to external changes like the weather, stuffy rooms or light glare. “Once those things add together to irritate the brain towards the threshold,” says Dr Munro, “the brain produces neurochemicals. And that leads to these attacks of migraine being triggered.”
In Gillian’s case they were triggered by stress: she first developed migraines while working an exceptionally fast-paced job just out of college. There was a question about whether these were female hormone migraines, but she was assured by the GP and the hospital that neither her natural hormone cycle nor the fact she was on the pill had anything to do with it, even when she changed from the combined pill to the progesterone-only pill to accommodate her migraine medication. After remaining on contraception for a further four to five years, “there was still a niggling feeling that hormonal medication had something to do with my attacks so I’ve come off medication completely for the past eight months, and I’m yet to have any migraines.”
Gillian can’t say whether her medication is the only factor but it points to one of the biggest pieces of the migraine puzzle, particularly when it comes to why it affects women more: hormones. Una Farrell, communications manager at The Migraine Trust, tells R29: “The changes in women’s hormones every month, and also the course of their lives, can impact migraines.” In particular it appears to be the drop in oestrogen that’s an irritant for the brain, with many women noticing that their migraine is triggered just before they have their period and that they become more frequent and severe in their 30s and 40s. Often the migraines end once women have been through the menopause.
The fact that women’s pain isn’t taken seriously only adds to the problem. Jenny, 36, works in publishing and first started getting migraines in her 20s. As she gets older they are worse and more frequent but getting adequate support from her GP has been difficult.
“The combination of mine being hormonal, me having a genetic link (my mum and brother get them) and (I think) being a woman has meant the [GP’s] attitude is mainly that this is just something that happens and I have to live with it,” she says. Since COVID began, Jenny can now have telephone GP appointments and has made it her mission to test different migraine treatments but her GP does not seem to her to be interested. “I suspect this is because they have no time and it’s just something the majority of women live with (like terrible period pain or other hormone-related issues),” she says. She finds it particularly frustrating that they have no interest in symptoms other than the pain, although they all affect her life: “Feeling low, depressed, spaced out and weird, the cloud that descends into my brain beforehand and is there afterwards – affecting my speech and thinking patterns – this all extends the actual ‘pain migraine’ by days.”
The lack of training around migraine, as well as the lack of awareness among the general population (which leads to sufferers just putting up with them), is key to understanding why patients with migraine don’t get good treatment, says Dr Munro.
This can lead to out-of-touch advice. Because some women find that the smoother flow of oestrogen during pregnancy helps their migraines, Dr Munro says: “We do sometimes hear patients say: ‘My GP said that the answer to your migraine is just have a baby’.”
There is a lot of gendered stigma around migraine. Dr Munro traces it back to Victorian times: “Men with migraine were considered to be rather intelligent and quite cerebral but if you were a woman you were thought of as being a bit nervy and a bit weak.” This association between migraine and weakness, and an inability to manage ‘reasonable’ pain persists to this day – the pain gap is well chronicled and only widens when you are marginalised in other ways. Like many other conditions that disproportionately affect women and AFAB (assigned female at birth) people, the cycle is reinforcing: the fact that a condition affects women more means that it is taken less seriously – and because it is taken less seriously, those who complain of it are seen as hysterical or overreacting.
The solution to the stigma as well as the individual migraine is better training and better access to treatment, which can in part come through getting a diagnosis and through individuals arming themselves with information about migraine. This is particularly important in work contexts. People with chronic migraine are considered to have a disabling condition, which means that migraine does come under the Equality Act and reasonable adjustments are a legal requirement of the employer. If your migraine is episodic (i.e. it affects you less than 15 days a month), having a diagnosis to point to can still help your condition be taken more seriously in the workplace.
“Because of the stigma of migraine, there’s this perception that when you phone in and say you’ve got a migraine, you just want an excuse,” says Dr Munro. “Employers can be quite unsympathetic and sickness policies often penalise people who have short, repeated absences.” A diagnosis, then, can help bolster you when you speak to your employer and negotiate reasonable adjustments.
The good news is that even though the gender pain gap persists and a lack of training can sabotage progress, you don’t have to ‘put up with’ migraine.
People find that a range of preventative and acute treatments can help. Jenny, for example, feels the benefits of a bath: “Sometimes if the pain is really bad I sit in a hot bath and run cold water over my head, then lie back into the hot water. The sensation of changing temperature almost distracts (momentarily) from the pain.” Keeping a migraine diary to track frequency and symptoms can also help, both when talking to the doctor and to identify some of the early signs that one is coming.
Gillian’s most effective method is to keep two tablespoons in the freezer. “I always keep them in there to put over my eyes when I feel a migraine coming on. It’s the most soothing feeling and it also makes sure I make the space to stop and rest for a few minutes to help ease the pain.”
When it comes to lifestyle changes, Dr Munro says that routine, as well as the right diet and supplements, can be hugely beneficial: “The brain, certainly with migraine, prefers routine. That means eating small amounts regularly, having a low GI diet, having regular, good quality sleep, trying to fix the waking up time in the morning.” Additionally, the vitamins and minerals magnesium, vitamin B2, Coenzyme Q10, vitamin D and omega 3 have been shown to benefit migraine sufferers.
On top of that, there’s a range of treatment options. For acute treatment there are anti-nausea tablets, pain relievers in the proper doses (as prescribed by a GP) and triptans, a medication specifically for acute migraine attacks.
As for preventative treatments, you have medications, neuromodulation devices (which stick to your forehead and can soothe the brain with an electrical impulse) and injections. Botox is the most widely researched but there are also anti-CGRP drugs: antibodies that you inject into your thigh once a month that block some of the pain chemicals indicated in migraine attacks. These are particularly effective but expensive and unfortunately, as with so many conditions, access through the NHS is often dependent on a postcode lottery.
Unlike many other conditions that we know very little about, there is a range of treatments for migraine – this week NHS health advisors approved the first treatment for acute migraine — the problem is that access to them right now is very imbalanced due to pressure on the NHS, people unnecessarily suffering in silence, and the fact that it is largely a ‘women’s problem’. Dr Munro recommends that people with migraine constantly advocate for themselves and show patience, especially when trying to find the right treatment. With migraines, you can’t tell what kind of treatment an individual patient will best respond to ahead of time, Dr Munro explains. “I really feel for patients who find that incredibly frustrating. Sometimes we hear that patients have been told that it’s just something they’ll have to live with but that makes me annoyed: there’s always more that can be done.”
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