Migraines, the third most common disease in the world

Today (Sept. 2) marks the beginning of Migraine Awareness Week, and as one of the 8.5 million Brits with the condition, I’m glad we’re discussing its impact.

The World Health Organization deems severe migraine as debilitating as dementia, psychosis and quadriplegia. I’ve spent at least 500 days in bed because of it.

That lost time is just one reason why I’m both hopeful and frustrated about the current treatment landscape, and why I believe awareness can’t be a substitute for funding. There’s a promising new treatment on the horizon, subject to approval for use in the NHS. Aimovig, also known as erenumab, represents the first significant progress in migraine medication for 20 years and is the only drug developed specifically to prevent it.

It could halve some sufferers’ migraine days and, because it’s not a repurposed drug, may have fewer side effects. As someone who’s been prescribed meds developed for angina, high blood pressure and seizures to control my migraines, I’m excited about this.

Meanwhile, charities such as Migraine Trust are doing invaluable work to promote research and support the one in seven of us living with it. Some sufferers also receive excellent care — I’m fortunate to now be one of them. On the downside, migraine is the third most common disease in the world yet there’s no cure, no conclusive cause, and no definitive test to diagnose it. Add to this the paucity of public understanding, which extends into workplaces, and there’s still so much to do.

Compared to its socioeconomic impact, migraine is one of the most under-funded diseases. It’s also underdiagnosed and undertreated.

My diagnosis took five years. In addition to severe head pain, I get vertigo, hallucinations, dissociation, memory loss, brain fog, jumbled speech, and sensitivity to noise, light and weather.

Sometimes I get an attack without head-pain. I saw five GPs, three neurologists, two ENT specialists, two psychotherapists, a rheumatologist, and physiotherapists. I also had physical exams, MRIs, X-rays, electrocardiograms, blood tests, and ended up in A&E more than once. I was told I might have a brain bleed, multiple sclerosis, post-viral fatigue syndrome, or post-traumatic stress disorder. I was also misdiagnosed and took the wrong medication for a year. My experience is not unique. When I was finally referred to the incredible team at Guy’s Hospital, I experienced first hand the transformative impact that great care can have.

New (and existing) treatments could be life-changing for more people but only if we invest in getting them the right diagnosis.

Around 200,000 people have an attack each day. Work Foundation estimated that 86 million workdays are lost to migraine at a cost of £8.8billion each year in lost productivity. The direct cost to the NHS is around £1billion annually.

Research shows many organizations fail to support employees with migraine. Even with extraordinary support from my former employer, I found work hard to navigate. It must be almost impossible without help and — for small employers in particular — challenging to manage.

I’m lucky enough to now work flexibly, mostly at home. But what about the millions working in offices, shops, schools and so on?

With so many days and jobs lost, not to mention stunted career progression, funding is needed to educate and incentivize employers. In the meantime, Migraine Trust has resources to help create workplaces that are mindful of migraine.

Migraine affects three times as many women as men. Given how common it is (more prevalent than diabetes, epilepsy and asthma combined), I can’t help wonder if it would be better understood if men were equally impacted.

Either way, the current funding approach seems a damagingly short-sighted way of managing a disease that has such devastating long-term effects on individuals, employers, productivity, the NHS and the public purse.

I’m beyond grateful to everyone advocating for and treating people with migraine but the urgent need for new treatment and diagnostic options can’t be met without adequate, sustained government funding.