Imagine yourself waking up and your head is pounding, not just pounding, it’s practically imploding. You groan, turn your head into the pillow to escape the sun streaming through the windows and pretend that if you keep your eyes closed the all too familiar zigzags in your vision will go away. But none of it will go away; it's not a hangover you can shake off and sober up from, it’s a migraine and when you have one, it’s hard to imagine what it would be like to be migraine-free.
June is Migraine and Headache Awareness Month, and headache disorders such as chronic migraine are now the third highest cause of disability worldwide, but there are a lot of prevailing misconceptions around migraine. Now that I’ve struggled with chronic migraine for over seven years, ever since I was 11 years old, I thought it might be time to finally talk about it, and do my part to clear up the confusion. Here are the top questions I get about my disability.
Isn't a migraine just a bad headache?
Not really. In reality, a migraine is more accurately one of many headache disorders, and they can have many symptoms that usually don’t present themselves headaches including nausea and vomiting, sensory hallucinations, fainting, vision loss, and mood changes among others. Conversely, you can actually have migraine episodes without head pain (but don’t worry, those are an entirely different type of terrible.) Usually, they’re pretty debilitating, and to be diagnosed with chronic migraine, a patient must experience 15 or more migraine days per month.
OK, so to get rid of one you can just take some painkillers and it’s all good, right?
I wish. That is the first thing most people try, and for some it works, but speaking from personal experience, it isn’t always so simple. In fact, many doctors don’t want migraine patients to use over the counter pills like Excedrin and Tylenol at all. Because of the frequency of migraines in chronic migraine patients, using over the counter solutions, which should technically be used only two to three times per week, quickly lose helpfulness when you basically never stop needing them, and then they start to induce rebound headaches called Medication Overuse Headaches. Yay, more pain!
Sooooo? Just go to the doctor, problem solved.
Within a week of my first migraine episodes my parents knew they needed professional advice. To date, I’ve seen two pediatric neurologists, two adult neurologists, and two primary care physicians for my migraines to little to know avail. I’ve tried over 20 medications ranging from heavy painkillers to mood stabilizers to anti-convulsants, and the closest thing I have ever found to relief comes in the form of Cambia, a powder substance used as needed, the only catch is that it’s hard to find insurance that covers it, and a single pack of nine doses costs almost $100 without insurance.
Additionally, neurology is a woefully understaffed and under researched field. The brain is a tricky organism and it’s extremely hard to find specialists. Once you do locate one, many of them will not see you unless you are specifically referred by a primary care physician which means that even if you know your physician has nothing to offer for your migraines because he’s already sent you on your merry way before, you still have to spend your afternoon playing phone tag with different doctor’s offices.
This system is entirely archaic, but it’s also a desperate attempt to stay afloat by neurologists and headache specialists. Already, the United States is facing a devastating shortage of neurologists as a result of demand increasing due to the number of aging members of the baby boomer generation seeking care for common problems such as dementia. That, paired with the fact that neurologists have lower average pay due to the low exchange rates from insurance programs such as Medicare and PPAFCA, means that medical students are not eager to fill in those gaps either. And it’s only getting worse from here.
So where does that leave us?
Many migraine and headache sufferers are struggling to make their lives worth living, which sounds like an exaggeration, but it really, really isn’t. Unfortunately, it can so often feel like life is never going to get better when you live with a headache disorder, but with a spread of awareness, not all hope is lost. If you recognize the symptoms of a headache disorder in yourself or a loved one, being proactive in finding the right treatments and relief can be life-saving, and the effort to understand what migraine sufferers go through starts with you.
