I am Dr Lawrence Newman, director of the Division of Headache at NYU Langone Medical Center in New York City, speaking for Medscape. Today I will be talking about disabling migraine through facts, figures, and faces.
Migraine is an enormous problem, affecting more than 1 billion people worldwide, including more than 40 million Americans.[1,2] About 13% of adults and 8% of children and adolescents suffer migraines. The lifetime prevalence of migraine is about 20%, and about 3% of the US population has the chronic form, in which they suffer from migraine attacks on 15 or more days per month.[1,2]
Migraine affects people when they are young. Migraines usually start before age 35 and afflict people predominantly during their peak productive years, between the ages of 25 and 55 years, when they are out in the workforce, taking care of themselves and their families, or are in school.
According to the World Health Organization (WHO), migraine is the third most common disease in the world and the sixth most disabling. In fact, WHO notes that a day lived with migraine is as disabling as a day lived with dementia, quadriplegia, or acute psychosis; moreover, migraine has been found to be more disabling than blindness, angina, or paraplegia.
But those are just words on a page, and they do not express the true impact of migraine on the family or the sufferer. Rob, who is one of my patients, puts it into a better perspective:
Imagine all of the people, possessions, and activities you love the most in life being right in front of you, but being in so much pain that you cannot reach out to grab them. That is how my migraines have made me feel every single day for the better part of the last decade. I have missed so many crucial days at school, so many paying hours at work, and so much leisure time with my friends and family, all because I have this disease and it controls me like I am a puppet.
This speaks much more dramatically than just words on a slide or in a neuroscience paper.
Who is burdened by migraine? Clearly the patients, but also their families, their employers (assuming they can maintain employment), and the entire healthcare system. Recent studies show that migraine actually tears at the very fabric of the family. Migraine leads to problems for patients with their spouses, their children, and the affected individuals themselves. From the CaMEO study, we see that migraine causes stress in the lives of patients with migraine, even when those patients are not actually suffering from an attack. In fact, one third of spouses of people with episodic migraine and one half of spouses of those with the chronic form of the disease report that they avoid the person with migraine because of the headaches.
We also see that migraine has an effect on the child, so that parents with migraine and their spouses report that the spouse is more demanding of children because of the migraine headaches. The effect on the individual with the headaches is also enormous. The migraine sufferers themselves tell us that they believe they would be better parents if they did not have this disease.
Abby describes these effects in even more poignant terms:
Daily migraines for the past 8 years made me quit my career. Now, as the mother of two young children, the severe pain greatly impacts my ability to care for them. My family gets a much lesser version of the person I used to be. I have less patience; I am more irritable and constantly stressed by the chronic pain. I spend a lot of time resting instead of being with my kids. I have been on a seemingly endless search for relief, and I have not yet found effective treatment and often think I never will.
Quite dramatic, but a story we hear all too often.
Migraine also affects the employer. Migraine costs American employers about $20 billion each year, both from direct and indirect costs.[5,6] Not surprisingly, the chronic form of migraine is more burdensome than the episodic form.
The indirect costs, translated as lost productivity, amount to about $1700 per year for patients with the episodic form and $3300 per year for those with the chronic form.[5,6] Cost in predictors of lost productivity time has shown us that the cost to men with chronic migraine is about $200 more per week than to men with episodic migraine. The difference for women was slightly less, at about $90 per week.
Finally, patients who suffer from chronic migraine achieve a lower employment status than those with episodic migraine. About 10% of patients with episodic migraine are occupationally disabled. Nearly twice as many are occupationally disabled because of chronic migraine.
Steve puts it even more succinctly:
I experienced my first migraine at age 12. Over the next 12 years, my migraines increased in severity and frequency. I am now 24 years old and should be able to have a full-time job. Because of my chronic migraines, I am unable to work or participate in daily activities, and I have been left stuck in a dark room. I no longer feel like I have specific attacks. I would say at this point that I have had a migraine for 2 years that just fluctuates in severity.
Patients with chronic migraines use the healthcare system more than those with episodic migraine. This involves not only outpatient, but inpatient and emergency department visits as well.
We have quite a few therapeutic shortfalls to deal with when treating patients who suffer from migraine. We have only a small number of available medications in our armamentarium. The newest agents for acute treatments, the triptans, are nearly three decades old. They were first marketed in the 1990s, and they are not a panacea; they do not work for everyone. In fact, as they have gotten older, many patients who used to be good candidates for these drugs no longer can take them.
Unfortunately, there are no breakthrough medications classes yet, but we hope we will have several coming along in the near future. Likewise, no new agents specifically for migraine prevention have been developed in more than half a century. We hope this will change in the next several months as well.
Why is effective treatment so important? One of the biggest problems patients with migraine experience is stigma. Compared with other chronic disorders that have an episodic occurrence, migraine stigma is significantly larger. The stigma for migraine is greater than that for asthma and is equal to that for epilepsy and panic disorder.[9,10] Not surprisingly, people with chronic migraine are more stigmatized than those with the episodic form. We also see that stigma is correlated most strongly with the patient's inability to work and with absenteeism if they do have a job.
Why are people with migraine stigmatized? There are many reasons. Migraine is not considered a "real" medical illness. Patients appear normal between attacks, so coworkers, family members, and friends do not understand how they could have suffered so severely up until that point. We do not yet have any specific biomarker for migraine; there is no blood test, there are no scan features that will tell us that someone does or does not have migraine.
Migraine tends to be comorbid with other psychiatric and psychological disorders. More often than not, many people with migraine report that their attacks are triggered by stress. Thus, migraine is often categorized as a psychological condition, when in fact it is not.
Of importance, although migraine is not viewed as a life-threatening condition, it really is. In fact, migraine is the leading cause of suicidal ideation and suicide attempts in both the civilian and military population.
As Rob describes his experience:
It is surrendering to the fact that life will never be the same and that it will always include varying degrees of pain, both mental and physical. It is dealing with the losses that are inherent with this condition. It is putting on a happy face, pretending things are okay on the outside, when on the inside they are anything but. It is knowing that people without chronic pain do not understand chronic pain. It is not knowing what tomorrow will bring. It is all easier said than done. It is no way to live, yet life goes on.
How do we disable migraine? We do it in a number of ways. We do it first and foremost by changing misconceptions. We need to teach physicians, patients, family members, and employers that migraine is a disease of the brain, building on what we already know—neurobiological, imaging, genetic, and epigenetic insights that we’ve discovered—and by educating the public and the healthcare community.
The good news is that things may change relatively soon. Several new preventive agents have been submitted to the US Food and Drug Administration for approval, the first new class of medication in nearly a half a century specifically for the prevention of migraine.
Thank you for your attention. I am Dr Lawrence Newman.
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Cite this: The Facts, Figures, and Faces of Migraine - Medscape - Mar 06, 2018.