The pain of living with migraine can be compounded by misunderstanding from our friends, family and colleagues
Migraine is the third most prevalent and sixth most disabling medical illness in the world; in the U.S. alone, over 37 million men, women and children live with the burden of unpredictable episodes, and the stress of not knowing when a crippling migraine attack will hit. Yet despite the severity and pervasiveness of migraine, this invisible disease is widely misunderstood.
Misconceptions about migraine don’t just contribute to the shortage of medical professionals focused on migraine, but also have a real, human cost. People living with migraine may experience a lack of support offered by loved ones who don’t understand when they have to cancel plans, or a lack of empathy from employers and colleagues when frequent migraine attacks prevent them from excelling at work. Here are some common misconceptions that people living with migraine face.
Migraine is just a headache
While “headache” might appear as a catch-all term for all sorts of head pain, migraine is distinct from headaches because of its duration, severity and accompanying symptoms. Move Against Migraine members know first-hand that migraine symptoms go beyond head pain and can be just as draining. Member Toni shares that after the head pain subsides, she’s “physically exhausted and drained from the dizziness, nausea, vomiting, skin sensitivity, the lights, the smell, the sounds and the inability to concentrate or think straight.”
The truth is that migraine is a complex neurological disease, illustrated by the graphic below. To help migraine patients and their loved ones better understand migraine and how it is different from a headache, the American Migraine Foundation broke down each phase of migraine and its common associated symptoms in this article and graphic.
Migraine is your fault
No one is at fault for a migraine attack. Dr. Thomas Berk, a headache specialist at NYU Langone Medical Center, named genetics the sole perpetrator of migraine when he busted common migraine myths for AMF. Many members reported that people accused them of “causing” their migraine attacks. Laura said the biggest misconception she faced about migraine was “That [she] has any and all control over it and that [she] exaggerate[s] how bad they are.” While migraine triggers may appear to be under your control, it’s impossible to manage all the factors that can trigger your attacks.
Dr. Berk said that the mystery surrounding migraine leads to misconceptions. “Sometimes it’s a difficult thing to open about,” he said, “It’s a very complex biological, neurological phenomenon.” He also encouraged the migraine community to use social media to bust migraine misconceptions and “to tell people who don’t otherwise know, ‘No migraine is not my fault.’”
Migraine isn’t as bad you say it is
Move Against Migraine members agreed that it was common for people around them to not believe the magnitude of the disability associated with attacks. Bridget shared with the group that migraine looks different for everyone and that “just because someone’s co-worker’s sister’s friend has migraine does not mean they have a clue of what migraine is really like.” She’s right and in situations like these, it’s important to express that there are different types of headache disorders and migraine in one person has no bearing on what migraine might look like in someone else. Like every disease, there is a spectrum of illness – some are more severely affected than others. Moreover, even in the same individual, the severity of attacks vary from one to the next – similar to other diseases such as asthma where one attack resolves within minutes without treatment while the next could put you in the emergency department or in the ICU on a ventilator.
To learn more about headache classifications or to determine what type of headache you’re experiencing, download the AMF guide to common types of headache. If you’re having difficulty explaining your disease to your loved ones or an unsympathetic boss or coworker, reading our free What to Do After a Migraine Diagnosis guide and Migraine at Work guide could help you lay the groundwork for a productive conversation.
Over-the-counter medications can stop migraine pain
While suggestions to take Tylenol, Excedrin or Ibuprofen may be made with good intentions, it’s unlikely that Tylenol will suffice for the vast majority of patients or for the vast majority of attacks in any given patient. Over-the-counter medication can sometimes ease symptoms and be taken for mild attacks, but it doesn’t address the needs for many patients who experience moderate or severe attacks. Another common misconception is that more medication is a viable solution.
Dr. Berk says that taking more medication to control your headache is “Definitely not a good approach,” and taking more medication might actually make your migraine worse. Medication Overuse Headache is an important topic for migraine patients and healthcare providers alike. For more about what constitutes medication overuse and how to avoid it, read this article.
Migraine is widely misunderstood, which contributes to the lack of treatment options and stigma surrounding the disease. While dealing with misconceptions about your migraine is like having salt rubbed into a wound, the American Migraine Foundation seeks to equip migraine patients with the tools and resources they need to manage their and receive the treatment they deserve. Find doctor-sourced information in our resource library or seek support in our Move Against Migraine group.