Why are so many migraine sufferers like me left waiting for a diagnosis?

·7 min read
Sarah Rodrigues, who has suffered from migraines since childhood
Sarah Rodrigues, who has suffered from migraines since childhood

The unwelcome spectre of a migraine announces itself in the same way each time for me: with floating bright spots in front of my eyes, as if I’ve been momentarily bedazzled. Yet, despite having experienced this sensation hundreds of times since the age of 11, my first thought is still, inevitably: “That’s odd – did I just look at a bright light?” – swiftly followed by a sinking “oh no.”

Given that migraines are associated with hormonal changes, it’s perhaps no surprise that my experience of them began at the same age as menstruation. Nor is it any surprise that my mother is a sufferer, too: not only are migraines frequently hereditary but it’s thought that three times as many women experience them as men. On the plus side, she knew exactly how to help me when that first debilitating pain struck, laying me down in a darkened room with a constant rotation of cold cloths placed over my eyes.

According to the National Migraine Centre, around six million people in the UK suffer from migraines – yet few seek help or diagnosis, brushing them off as ‘just a bad headache’ or attributing them to stress, tiredness or over-indulgence. Certainly, I’ve never done anything more proactive where mine is concerned than to take painkillers at shorter intervals than the package guidelines suggest, even when I’ve been prostrate and vomiting for days at a time.

Yet migraines are far more than ‘just a bad headache’ – they are, according to The Migraine Trust, a complex neurological condition. Whether episodic or chronic, they are debilitating for the sufferer: a Censuswide survey conducted by the Trust reveals that 32 per cent of people living with migraine say that it affects their mental health, while 25 per cent and 27 per cent of people, respectively, say that it affects their family and social life.

And it’s not just the individual who suffers: it is estimated that migraines cost the economy around £4.4 billion each year, with three million sick days lost to the condition. And, despite the fact that many people who experience migraines don’t seek help, there are many who do, yet still don’t get the ongoing help they need: statistics indicate that hospital admissions for migraine have increased by 14 per cent in the past five years, with emergency admissions costing the NHS around £11.5 million annually.

In a report published for this year’s Migraine Awareness Week (September 5-11) the Migraine Trust launched a report entitled Dismissed for Too Long, which “reveals … [a] broken migraine healthcare system – from waiting years to be diagnosed to a lack of access to specialist care and new treatment.”

“There’s a huge push for everything to be managed in primary care, but the fact is that GPs simply don’t get enough training on migraine,” says Gemma Jolly, head of information and support services at The Migraine Trust. “We regularly hear from people who have spent years, and been to multiple appointments, trying to get their doctor to take them seriously.” Additionally, she says, there is a notable lack of specialists in the UK, where there are just 1.1 full-time equivalent neurologists per 100,000 people (compared with France and Germany, where there are more than four neurologists per 100,000 population) which inevitably results in lengthy waiting times.

Another issue limiting access to appropriate care is some of the beliefs surrounding migraine – not only that it is simply a particularly nasty headache, but that the sufferer is in some way responsible for their occurrence. “It can be incredibly unhelpful for someone with a migraine to be told that they could avoid them if they would simply drink more water, or drink less alcohol, or avoid chocolate and cheese,” observes Jolly. “This just adds to feelings of guilt, and worsens the psychological and emotional impact of the condition, making it even less likely that sufferers will seek help.”

That said, there is a role for lifestyle tweaks in managing migraines. “Keeping a consistent routine can help,” says Jolly. Clinical nutritionist Suzie Sawyer, of supplements range Alive! agrees: she suggests eating every three to four hours, and including protein with each meal to keep blood sugar levels in check, as well as going to sleep and waking up at the same time every day, even on weekends. Gentle and regular exercise, as well as adequate hydration and care around caffeine and alcohol, may also help to limit the frequency and severity of attacks.

In the premonitory stage of a migraine – that is, before grinding pain takes hold –it’s not uncommon for sufferers to experience a shift in mood, or to feel a sudden sense of lethargy. Another common element in this phase, experienced by my mother, is an intense craving for something like cheese or chocolate, something that she has described as “my body cruelly trying to get me to have the exact thing which will make me ill.” Yet, says Jolly, that craving indicates that the migraine has already started – in fact, she says, “by that stage, having some cheese or chocolate probably won’t make any difference.”

“There’s a lot of interest in the link between diet and migraine, and there’s research being undertaken in America about the benefits of various diets, but nothing conclusive around how helpful they are, so we’d advise that a balanced and healthy diet is always the best option,” she says. “If you suspect that certain foods really do act as triggers for your attacks, then we’d suggest keeping a diary for a few weeks to see if there are any obvious links that might alleviate your suffering.”

In terms of drugs, many sufferers find that aspirin and ibuprofen are more effective than paracetamol; Jolly says that sumatriptan, which is available without a prescription, can also be useful (although should be avoided by those with cardiovascular problems) and may be used in conjunction with anti-nausea medication. Other options that might be prescribed by your GP include medications that have been repurposed from other conditions, such as beta-blockers, antiepileptics and ACE inhibitors. Says Jolly: “Usually you have to be having at least four migraine attacks a month for those to be considered, and they take about six to eight weeks to work, but you have to be on an effective dose. Unfortunately, what often happens is that people start on quite a low dose and are then just left there, so they’ll give up in the belief that it hasn’t been effective.” That said, she adds, these drugs can have some unpleasant side effects and certainly don’t work for everyone.

Once these suggestions from your GP have been ineffective, you’ll be eligible for a referral (although you can self-refer via The National Migraine Centre) to a headache specialist or neurologist, which may grant further access to a wide range of treatments and prescription options, such as flunarizine, a calcium channel blocker; and greater occipital nerve blocks, which involve injections of local anaesthetic and steroids around the nerves supplying the scalp.

On the subject of injections, what about Botox? Used as an NHS-approved treatment for those with chronic migraine, it aims for about a 30-50 per cent reduction in headache days – but, points out Jolly, given that chronic migraine is defined as having at least 15 headache days each month, with at least eight of these featuring migraine symptoms, “you could still be having a lot of headache days after the treatment.” Nor is it the first port of call for which you can just pop down to your local aesthetician: as with flunarizine, The National Institute of Health and Care Excellence (NICE) recommends that at least three failed preventive treatments should have been undertaken first and that the sufferer should have been appropriately managed for headache medication overuse. Treatment is not the same as that administered for aesthetic purposes, either (although some of these benefits are sometimes seen) and will consist of 31-39 injections in and around the forehead, around the ears and into the neck.

Ultimately, says Jolly, migraines need to be better understood. “We need to have open conversations about it so that people get the support that they need; so that the myths surrounding it start to diminish, and so that sufferers don’t feel that they should just soldier on, or not ‘burden’ the NHS with their problems. Because of the stigma, people try to cover up how much it affects them, and it simply creates a vicious cycle.”

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