World Brain Day 2019: Time to Recognize Migraine as a Disease (Not a Fancy Word for Headache)
By Shahnaz Radjy
Do you consider migraines to be just a bad headache? An excuse to cover up feeling hungover or for being too lazy to go out and meet friends? These are critical misconceptions about what is a real and very disabling neurological disease.
In honor of World Brain Day 2019, freelance writer and WBP Executive Committee member Shahnaz Radjy shares her conversation with a migraine sufferer.
A few months ago, I spoke to Chiara, a 27-year-old based in Zurich who is fluent in five languages and considers herself “a friend of justice”. She used to dream of studying sociology before working in the humanitarian field, perhaps with the Red Cross.
Today, she is the assistant manager for a chocolate shop in Basel. This is after she tried her hand at various apprenticeships and jobs, from learning bookbinding to working at a daycare.
The difference between what she thought her life could be and her life today? Migraines.
When she was still in school, Chiara went through periods when she had a slight headache every day, and a migraine five to ten times per month. That was not merely a bad headache, but involved nausea, vomiting, and high amounts of pain.
She was never a very good student, because she slept a lot and often skipped out on doing homework. The assumption was that she was lazy, but the truth is she was trying to figure out how to deal with a debilitating disease.
Her triggers are broad: any kind of emotional stress (whether positive or negative), laughing a lot, a lack of sleep, not eating healthy, not doing enough sports, financial concerns, and in some cases… nothing.
Sometimes the pain starts in the shoulders and goes up into the head, or it begins in the eyes, at her temples, her fingers get numb, or her behavior changes. This can mean being exaggeratedly joyful or hysterical – which she finds embarrassing, because she is aware of it as it happens even if she is powerless to do anything about it.
The pain, Chiara can manage. The greater struggle is that after the migraine abates, she feels “stupid” – because it is hard for her to maintain a conversation or even make herself a cup of tea. These side effects can linger for a day or two after the attack.
What makes it even worse is that after a migraine, it feels like her body is craving energy and completely dehydrated. Regardless, it feels impossible to move even if the goal is to get a simple glass of water.
Doctors, unfortunately, have historically not been helpful. They don’t really listen to her description of what she experiences, not taking her claims seriously and often interrupting her when she begins listing the symptoms. It doesn’t help that migraine is considered a women’s disease, as it is more prevalent in women than men.
The solution the doctors always seem to land on? Pills.
Chiara has been prescribed supplements: herbs such as Vitamin B 12, Magnesium, or Devil’s claw (homeopathy) to name but a few. Some make her nausea worse. Others at best do nothing.
This is unfortunately a very common experience for anyone suffering from migraines. The diagnostic experience is awful and littered with dead ends.
As a result, Chiara has had to learn how to cope by herself. She lives alone and needs a lot of peace. When a migraine hits, her best solution is to isolate herself in the dark and quiet. This is a strategy that often works, because migraine is a “pansensorial” disease, where patients experience light, noise, and smell in an exacerbated and painful way, because their brains are wired differently.
Chiara sometimes self-medicates with painkillers so that she can make it through the day, but doing that too often can lead to an addiction as well as harsh side effects. These range from stomach issues (a feeling of having swallowed hot stones), a loss of appetite, numb taste buds, or constipation.
When she last went to the doctor’s, in the hopes of being pointed in the direction of a therapy group, she got prescribed anti-depressants. Reviewing the list of side-effects, she has abstained from taking them.
In the meantime, Chiara has not found many support groups nearby or online, although she knows there are blogs about migraine. Her research has made her discover the theory behind all sorts of supposed cures, including the idea of drilling holes in the skull – in a book from the 60s by Joe Mellen – so that there can be more air and space for blood flow (meant to simulate microdoses of LSD)!
In spite of suffering from migraines, Chiara is upbeat and loves life. She does her best at work and enjoys reading (detective stories are her favorite, alongside anything like Orwell or Allende that make you think) as well as spending time with friends. She also loves playing with her parent’s Labrador mix, Ciccia.
“Migraines have many faces; others may suffer from the disease differently. The thing is, there is not much space to talk about it, as people don’t seem to really care” says Chiara. She considers herself lucky, because her mother also suffers from migraines (though with her it always starts in the shoulders). As a result, she has always been a source of support and the safety net Chiara knows she can fall into.
Other women I have spoken to mention always having pain on the same side, experiencing a stabbing pain that rendered them unable to move, vertigo, the weather or hormones being a trigger (they noticed because they were on the pill and once a month like clockwork they would get a migraine), and thinking they were suffering from a bad hangover because they had never heard of migraines. In one case, a vasoconstrictor was useful to keep the worst of the pain at bay if taken in a specific window when migraine symptoms began. In every case, diagnosis and support were hard to find at best, almost as though the disease was a taboo.
The tides may slowly be turning, with this year’s World Brain Day focus being The Painful Truth About Migraine. With 1 in 7 people suffering from migraine, and with other headache disorders, is one of the leading causes of disability worldwide.
In Europe alone, migraine accounts for 400,000 lost days of work or school per year.
The Women’s Brain Project is calling for sex and gender differences to be integrated into pre-clinical and clinical studies so that we can begin to understand why men and women’s brains are different. This applies to the prevalence of disease, symptoms, diagnoses, and response to treatment.
With regards to migraine, we know estrogen is involved in migraine susceptibility, but we still do not know why. One reason for this is that most pre-clinical research on the topic is done with male mice.
Until the research evolves, we will continue to say it loud and clear: migraine is a real neurological disease. It deserves respect, support, and treatment. The more we talk about it, the greater the advocacy around it, the better chance we have at moving the needle and improving the lives of countless people like Chiara. Women – and men – who are dealing with pain and disability, and deserve a shot at their wildest dreams.
[Featured photo credit: Pixabay]