Researchers found that more than two thirds of patients with chronic migraine feel their condition affects their sexual intimacy and that it makes their spouse's life difficult. Patients also report feeling guilty and worried about the effect their headaches have on their partner and children.
"Our research team believes it's very important to bring these data to light, to show that chronic migraine is a burdensome and difficult condition, not only for the people who live with it, but also for the people they love," said lead researcher and clinical psychologist, Dawn Buse, PhD, Department of Neurology, Albert Einstein College of Medicine, and Montefiore Headache Center, Bronx, New York.
"We hope that these data will raise awareness among family members, coworkers, society, healthcare providers, insurers, and government agencies who fund research, so that the magnitude of the effects of chronic migraine is more fully understood."
Dr. Buse will present the research here at the American Headache Society (AHS) 56th Annual Scientific Meeting.
Chronic Migraine Epidemiology & Outcomes (CaMEO) was a prospective, Internet-based study. People with chronic migraine (experiencing 15 or more headache days a month) and their spouses and children completed questionnaires to provide data on the burden of migraine.
This first analysis included 994 patients with chronic migraine who were assessed by using the validated American Migraine Study/American Migraine Prevalence and Prevention screener, a modification of International Classification of Headache Disorders 3b. They therefore experienced headaches that were pulsating, were of moderate to severe pain intensity, and worsened with routine activity, accompanied by nausea, phonophobia, and photophobia.
The analysis showed that:
64.1% of respondents feel their headaches make their partners life difficult;
72.5% feel they would be better partners if they didn't have headache;
70.2% are easily angered or annoyed by their partners because of headache;
67.2% avoid sexual intimacy because of their headaches;
64.4% feel guilty about how their headaches affect their partner;
59.1% believe they would be better parents if they didn't have headaches;
20% missed planned family vacation within the previous year; and
53.6% had less enjoyment while on vacation because of headaches.
Compared with men, women, who made up 81.7% of the study sample, cancelled plans 23% less often in the previous month because of headache (relative risk [RR], 0.77; 95% confidence interval [CI], 0.61- 0.98; P = .03) and missed 49% fewer holiday/religious events (RR, 0.51; 95% CI, 0.32 - 0.80; P = .003) and 52% fewer weddings/important events (RR, 0.48; 95% CI, 0.30 - 0.79; P = .004).
This could be because women with chronic migraine are less impaired from headache attacks than are men or are more resilient to such attacks, said Dr. Buse. Another hypothesis, she added, is that mothers and wives may not feel they can miss a family event or shirk a responsibility, and "soldier on" despite debilitating and painful headaches.
These new study results, said Dr. Buse, are "heartbreaking," but they're not surprising, at least not to her. "I hear how difficult chronic migraine is on family life from my patients on a daily basis."
However, the results may be news to those who think that migraine is "just a headache," she said.
Dr. Buse and her colleagues hope the research will give clinicians a better idea of the burden this condition places on patients, and encourage them to be diligent in accurately diagnosing chronic migraine and providing appropriate treatment plans. Such plans include both pharmacologic and nonpharmacologic approaches, such as cognitive-behavioral therapy, biofeedback, and relaxation training.
The researchers hope the study helps patients with chronic migraine realize they're not alone in their feelings and helps others better understand this condition's "far-reaching burden," said Dr. Buse. By doing this, she added, "we can help remove the stigma and shame that those who bravely live with chronic migraine may feel."
Dr. Buse would also like third-party payers, policymakers, and government agencies that fund research to recognize the serious effect of this condition on families and earmark funds for relevant research and care.
"Families are the heart of our society," she said. "We need to do everything that we can to nurture, support, and protect them."
Among the research team's next steps is to learn how spouses and children are affected when a loved one experiences chronic migraines. They also plan to determine whether the burden on families is any different with episodic migraine.
Approached for a comment, Lawrence C. Newman, MD, director of The Headache Institute, Mount Sinai Roosevelt Hospital, New York, New York, said the study was well done and is important for many reasons.
"First and foremost, it highlights how chronic migraine affects more than just the individual sufferer, that it has a significant impact on others with whom the migraine sufferer has close relationships," he told Medscape Medical News.
The results mirror what Dr. Newman sees in his own practice. "Patients and their families all suffer - the patients because of the pain the migraine inflicts and the guilt they feel at letting their loved ones down; and the children and significant others because of missed time spent with the chronic migraineur."
Patients frequently tell Dr. Newman that they "die inside" when their kids ask, "can we do something today or do you have another headache?" But the study suggests that the impact of chronic headaches is not limited to parental relationships. "The patient's perceptions of the impact on their romantic relationships are very striking," noted Dr. Newman.
He stressed that this impact goes beyond the time spent with an actual headache, as relationships are also affected between attacks.
Dr. Newman agreed that women with chronic migraine might bear a greater burden than their male counterparts because they take on more family responsibilities but that this finding could be related to the study demographics.
Because the analysis looked only at the patient perspective, "I'm certain the impact would be even more striking if other family members were interviewed as well," said Dr. Newman.
The study illustrates the importance of finding an effective treatment for chronic headache, commented Dr. Newman. "To that end, the American Migraine Foundation has launched its 36 million migraine campaign, a grassroots effort to raise funds to establish a migraine registry and bio-repository that will hopefully help us find a cure for this disorder."
Burden of Disability
Also commenting for Medscape Medical News, Werner J. Becker, MD, professor, Department of Clinical Neurosciences, University of Calgary, Alberta, Canada, also underlined the importance of recognizing the burden of disability caused by chronic migraine. He pointed out that the World Health Organization now ranks migraine as the eighth leading cause of years lived with disability.
"Chronic migraine sufferers represent the more severe end of the migraine spectrum," said Dr. Becker.
He noted that in his own practice, patients with headache tend to be even more disabled than the ones in the study because patients with more severe chronic migraine typically get referred to specialists like him.
It's estimated that up to 39 million people in the United States are living with migraine. Of these, 3 to 7 million have headaches on more days than not and so have chronic migraine.
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