DARKER AND DARKER.
Storm clouds creep in,
Lightning strikes, vision blurred.
Hands reach for the scalp
Tugging on hairs like a life rope.
She clutches the stern
Trying to hold onto the contents of her stomach.
She stumbles overboard.
She wants the waves to consume her, to drown
But she continues to tread water.
Julie Maree knows that there are more waves to come.
It will continue.
Minute after minute,
Day after day,
Wave after wave,
Alone at sea.
Julie Maree is one of three million people in Australia who suffer from migraine. According to the World Health Organisation, migraine headaches are more common than asthma, diabetes and epilepsy combined, with one in every seven people affected – or one billion people worldwide. They cost Australia more than $1 billion dollars each year in medical bills and loss of productivity.
According to the Migraine Research Foundation, migraine is a neurological disease, not just a headache. In fact, they are the third most common and sixth most disabling disease in the world. There is no known cause or cure. No two sufferers are alike, but common symptoms include pulsing or throbbing pain in the head, nausea, vomiting, sensitivity to light and sound, aura or disturbed vision, vertigo, numbness, weakness and tingling. Migraine attacks generally last between four and 72 hours. In some cases they can be life threatening, causing stroke.
Migraine is considered chronic when it occurs on 15 or more days per month, over several months. Maree’s migraines range from episodic to chronic. Maree is a 46 year-old mother of two from Perth. Her migraines started when she was 14 and became more severe after a car accident at 18. Maree describes most days as a struggle. “At best, it’s a constant dull ache behind one eye. At worst it’s like a long, sharp knife is continuously stabbing me in the eye,” she says.
Migraine is one of the oldest illnesses known to mankind with cases recorded by the ancient Egyptians as early as 1200BC. Despite its long history and the sheer number of sufferers, it is only recently that migraine has received any real attention. This is due, in part, to the growing role of technology in the treatment and management of the disease.
In April, Maree attended the first online Migraine World Summit, which included 30 leading migraine experts, doctors and specialists from around the globe. “I was so excited to find out that I could sign up for a free online conference. It was an amazing opportunity to get advice from world-leading specialists and to hear from other sufferers that understand my pain,” she says.
Migraine World Summit creator and migraine sufferer Carl Cincinnato believes connecting those suffering from migraines could be the key to reducing feelings of anxiety, depression and isolation, which are by-products of chronic migraine. “It affects others around you. It affects your relationships. It has broken up marriages, families, ruined careers, affected jobs. Ultimately it affects your quality of life. That was the reason I started the Migraine World Summit, to help reduce the global burden of migraine,” Cincinnato says.
Last month, Maree was invited to a friend’s wedding. Shopping for a new dress is challenging for a migraine sufferer who struggles with bright lights and loud noises. In the days leading up to the occasion, she carefully paced herself, took her preventative medication, and steered clear of alcohol and chocolate.
But, on the morning of the wedding, her head was thumping and she was bedridden. Her husband called an at-home GP, but the tags remained on her new dress. “Often people will tell me to just have a Panadol. They really don’t understand the severity,” Maree says.
Like Maree, Cincinnato has suffered with migraine headaches for more than 20 years. He is the creator of the MigrainePal website, which is a community for migraine sufferers to share information and support each other. “The toughest thing I ever did was call out,” Cincinnato says. The website and summit are his way of re-paying people for the support he received from others. More than 7500 people attended the summit and he hopes it will become an annual event. Maree describes it as an answer to her prayers, claiming it gave her a sense of hope.
“Technology was the perfect vehicle to deliver the summit for people with migraine” Cincinnato says. Travel, jetlag, stress, bright lights and loud noises are often triggers. Seeing a specialist is costly and usually involves long waiting lists. “Online was the ideal mechanism to deliver the world-class information as people could attend from the comfort of their couch or bed,” he says.
The summit also provided Maree with the opportunity to learn about websites, social media platforms and phone applications designed to support anyone who deals with migraine. Websites including Migraine Buddy and MigraineAgain are connecting people across the world. “I had no idea this technology existed and I started using it straight away,” Maree says.
Migraine triggers vary from person to person and identifying them can be complicated. Francois Cadiou is co-founder of Migraine Buddy – a platform with a free mobile application used by almost half a million people. Cadiou, who also suffers with migraine headaches, developed the app to allow migraineurs to identify emerging patterns in the triggers. The latest development is a function that notifies your selected phone contacts when you have a migraine. For Maree, this means her husband knows that she is in pain.
MigraineAgain is a website and social media platform that reaches more than one million people each month, in 45 countries. Founder Paula Dumas says she has lost a decade’s worth of days to migraine and decided to make her pain her purpose. “Social media is so valuable for engagement,” she says. “We are trying to make world-class care accessible to everyone by providing advice on the best therapies, health habits, diet, sleep, exercise, supplements and more.”
Maree is participating in a new clinical trial using vitamin therapy to reduce the frequency of migraines. “Hearing about the world’s first online migraine summit and the things that I learnt from it has really changed my outlook,” she says. “I’m now using technology to discover more opportunities for learning and being involved in the migraine community. I’m still getting migraines but for the first time in years I feel hopeful.”