By Jill Dehlin
One in seven people have migraine. Chances are if you don’t have it, you know someone who does. It is the most disabling condition among women of childbearing age, and the second most disabling condition on the planet. For too long, migraine has been under-researched by the federal government, and under-prioritized by medical schools all over the world. Because of this, individuals with headache and migraine are often misdiagnosed and suffer through with outdated and ineffective treatments. Since it is a stigmatized, invisible disease, many individuals with disabling headache disorders like migraine and cluster headache feel shamed at the workplace, at school, at social events, and even at medical appointments.
Let’s change that right now with this year’s Migraine and Headache Awareness Month (#MHAM2022)!
June is National Migraine and Headache Awareness Month and was begun by the National Headache Foundation (NHF) in 1970 to raise awareness about headache and migraine. This year, NHF created the “Seven Second Freeze Challenge” to help bring greater awareness to migraine and other disabling headache disorders. If you’ve ever eaten ice cream or a frozen beverage too quickly, you’ve experienced – for just a few seconds —a small sample of the pain of a migraine or cluster headache attack. Spread the word and raise awareness about headache and migraine. Take the “Seven Second Freeze Challenge” and post your videos on social media and challenge your friends and family members to do the same.
Many people with migraine disease inherit it from a family member. I inherited migraine from my grandmother. I had my first “three-day headache” at the age of 32 but was not diagnosed with migraine disease for more than 10 years. When I was finally diagnosed, there were no migraine-specific treatments available, just medicines borrowed from other diseases like epilepsy, heart disease, and high blood pressure. I was disabled for more than five years with searing head pain, fatigue, brain fog, nausea, vomiting, dizziness, and sensitivity to light, sounds, and odors. I tried more than 60 different medicines that were ineffective or caused intolerable side effects. Fortunately, treatments for headache and migraine have greatly improved since 2018. These include medicines and devices created specifically for disabling headache like cluster and migraine. I have my life back, and the resources at the National Headache Foundation are a big reason for this. Unfortunately, many clinicians have not kept up, and patients are unfortunately getting outdated treatments and counsel.
Patient and family-driven advocacy are important in decreasing the stigma associated with headache and migraine. If you have a disabling headache disorder, it is important that you educate yourself about your condition so you can advocate for yourself and others. This includes family, friends, co-workers, and sometimes even your health care provider. The National Headache Foundation (www.headaches.org) is a great place for resources, including accurate, relevant, and helpful information for you and those in your circle. The website also includes a directory of clinicians – listed by state or alphabetically – to help you find someone who is an expert in treating headache disorders.
This summer, consider participating in the Seven Second Freeze Challenge to help raise awareness about these invisible diseases. The National Headache Foundation and your primary care clinician are key in helping you get the treatment you deserve.
Jill Dehlin of Michigan is a registered nurse and health educator with experience in public health, literacy, health literacy, and advocacy. She is a member of the NHF Board of Directors and Chairperson of the NHF Patient Leadership Council.