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Sunday
Jul272014

Family Burden of Chronic Migraine - Heartbreaking results of the CaMEO study - And hope for change

 

"The practice of patience toward one another, the overlooking of another's defect, and the bearing of one another's burdens is the most elementary condition of all human and social activity in the family, in the professions, and in society." - Lawrence G. Lovasik 

An estimated 37-38 million Americans live with migraine, a debilitating neurological disease with episodic manifestations known as migraine attacks, which may become chronic. Although the frequency and duration of our attacks varies between us as individuals, those of us who have migraine are familiar with the personal and family burden of our disease.

However, given migraine is often referred to as "just a headache" that will disappear if we take a "pill", it is believed that the burden of migraine is not well understood by many who do not experience it. Keeping this in mind, this article addresses the: 

  • personal burden of migraine,
  • family impact of migraine, and
  • the results of a new study, "Family Burden of Chronic Migraine to the Migraineur".  

Personal burden  

In a review of the literature, "The burden of migraine to the individual sufferer: a review," (Dahlof and Solomon (1998), the authors report, "Migraine attacks can have a profound effect on the day-to day lives and well-being of the sufferer." They go on to say, "In the long term, migraine may cause profound emotional changes and result in coping strategies that interfere with working, social and family life and many normal activities. These effects are apparent in quality of life studies on migraine patients."

Family impact of migraine

To assess the impact of migraine on family life both from the perspective of those with migraine and from the perspective of their partners (Lipton, Bigal et al, 2003), individuals in the USA and UK with six or more migraine attacks per year and living as married with partners were asked, along with their partners, to participate in a computer-assisted telephone interview. Results of the study showed: 

  • 85% reported substantial reductions in their ability to do household work and chores.
  • 45% missed family social and leisure activities.
  • 32% avoided making plans for fear of cancellation due to headaches.
  • 50% believed that because of migraine, they were more likely to argue with their partners, 52% children.
  • 52-73% reported other adverse consequences for their relationships with their partner, and children, and at work.
  • 36% believed they would be better partners but for their headaches.

Of the participating partners, 29% felt that arguments were more common because of headaches and 20-60% reported other negative effects on relationships at home.

Another study on the impact of migraine on work, family, and leisure among women 18-35 years of age in Israel and eight European countries (Dueland, Leira, et al, 2004), found substantial migraine-related impairment of productivity at work and school as well as of family and leisure time.   

Family burden of chronic migraine (CM)

Now, we come to the focus of this article. In general, CM is defined as migraine with headache days occurring 15 or more days per month. About 3-7 million people in the US live with this painful and debilitating condition.

To show that CM is a burdensome and difficult condition, not only for the people who live with it but also for the people they love, a web-based study of 994 men and women with CM was used to measure the perceived nature and extent of CM-related burden on family relationships and activities (Buse, Dodick, et al, 2014). The results presented at the 56th Annual Meeting of the American Headache Society revealed:

  • 64.1% of respondents felt their headaches made their partners lives difficult, and 72.5% felt they would be better partners if they did not have headache.
  • 70.2% of respondents reported being easily angered or annoyed by their partners because of headache, and 67.2% stated they avoided sexual intimacy because of their headaches.
  • 64.4% experienced guilt about how their headaches affect their partner.
  • 59.1% felt that they would be better parents if they did not have headache.
  • 20% of respondents reported missing a family vacation within the previous year and 53.6% had reduced enjoyment while on vacation because of headache.

Females consistently reported lower percentage rates of absenteeism because of headaches than males across many activities. The researchers attributed this to possible differences in headache severity between genders, differential denominators in that females may have more activities and responsibilities, or females may feel more obliged to keep commitments despite migraine occurrence. When asked about these findings in an interview, the lead author of the study, Dawn C. Buse, Ph.D., said, " females (mothers and wives) may simply feel they cannot miss a family event and soldier on despite debilitating pain and associated symptoms". 

In the same interview, when asked if the study results surprised her, Dr. Buse replied, "The results are heartbreaking, but not surprising. I hear how difficult CM is on family life from my patients on a daily basis. I have shared the results of this research with several people with CM over the past few weeks and they say that these data describe their lives."

"Families are the heart of our society. We need to do everything that we can to nurture, support, and protect them." - Dawn C. Buse 

As the interview continued, when asked what consumers and health providers should take away from the study, Dr. Buse responded as follows:

"CM is a debilitating disease that affects all aspects of life including roles, responsibilities, and relationships with the family. We hope that people living with CM realize they are not alone in feeling guilty, worried, or sad about how their condition affects their family. We hope that by shedding light on this experience, people with CM and their families will realize that this is a difficult condition for most people who live with it.

We hope that people who do not have migraine may understand a little better the far reaching burden this condition imparts on sufferers, and hope they will be a little more caring and understanding in response to a friend, colleague or family member with CM. We also hope that by shedding light on the normal and common response to this condition, that we can help remove the stigma and shame that those who bravely live with CM may feel.

We also hope that health care professionals will realize the scope of the burden of this condition on sufferers, and be diligent in providing accurate diagnoses and thorough treatment plans, which include both appropriate pharmacological and non-pharmacological (e.g. cognitive behavioral therapy, biofeedback, relaxation training) interventions. We hope that they will recognize that feeling sad, overwhelmed, guilty, frustrated, irritable, depressed and anxious is common for people living with CM and that they will encourage and facilitate patients seeking professional mental help when these feelings become overwhelming.

We hope that third party payers, policy makers, and government agencies who fund research will recognize the serious and damaging effects of this condition on families and put necessary funds towards research and care."

"Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come." - Anne Lamott 

For me, I have been on a roller coaster ride with migraine since I was five years old. When I was in my early forties, at the height of my career and deeply involved in family responsibilities, my migraines began increasing in frequency and severity. At the age of 54, I was diagnosed with CM and medication overuse headache (MOH) and my life was put on hold. Like so many others, a career I loved disappeared and I struggled to cope with day-to-day living and several of the findings we have looked at.  

However, I am extremely fortunate and my story is one of hope. With the help of two amazing doctors and a combination of a preventive medication (which I have been able to reduce) and non-pharmacological strategies like biofeedback, meditation, breathing techniques, acupuncture and healing touch, in my mid 60's I was able to remit from CM and MOH to infrequent episodic migraine (EM).  Consequently, my pain, disability and family burden is much, much less and I enjoy a wonderful quality of life.

I share the results of this study, along with Dr. Buse's interview, in the hope that with the assistance of informed health care professionals, increased funding for research and accurate diagnoses and appropriate pharmacological and non-pharmacological interventions, people who have episodic migraine (EM) can be prevented from progressing to CM, those who live with CM have the opportunity to remit, and if remittance is not possible "that those who bravely live with CM" are able to lead a better quality of life, and because of a more compassionate society, without the stigma they may feel.  

References:

Buse, D., C., Dodick, D. W., et al (2014). "Family Burden of Chronic Migraine to the Migraineur: Results of the CaMEO study". Poster presented at the 56th Annual Meeting of the American Headache Society. Los Angeles, CA. June 25th-29th.

Buse, D. C., director, Behavioral Medicine, Montefiore Headache Center and associate professor, Clinical Neurology, Albert Einstein College of Medicine. Interview ( 2014) presented with permission.

Dahlof, C. G., & Solomon G., D., (1998). "The burden of migraine to the individual sufferer: a review." Eur J Neurol.  Nov;5(6):525-533.  http://www.ncbi.nlm.nih.gov/pubmed/10210887

Dueland, A., N., Leira, R., et al (2004). "The Impact of Migraine on Work, Family and Leisure Among Young Women - A Multinational Study." Curr Med Res Opin.  20(10). http://www.medscape.com/viewarticle/491091_print    

Lipton, R.B., Bigal, M.,E., et al (2003). "The family impact of migraine: population-based studies in the USA and UK. Cephalalgia. Jul;23(6):429-40.  http://www.ncbi.nlm.nih.gov/pubmed/12807522  

Sharron Murray MS, RN is an author and coauthor CaMEO Study, "Life With Migraine". Currently, Sharron is active in the migraine community as a writer, advocate, American Migraine Foundation Partner, moderator for the American Migraine Foundation "Move Against Migraine" Facebook Group, and member of the National Headache Foundation Patient Leadership Council. 

Follow Sharron on twitter @murraysharron, her Facebook page: Sharron Murray, MS, RN, and her website www.sharronmurray.com  

This article is not intended as a substitute for medical advice. If you have concerns about your health or nutrition, please see a qualified professional.

Copyright, 2014, Sharron E. Murray

 

 

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Hi,

I hope all is well with you. Healthline just published an infographic detailing the Effects on the Body of Alcohol. This is an interactive chart allowing the reader to pick the side effect they want to learn more about.

You can see the overview of the report here: http://www.healthline.com/health/alcohol/effects-on-body

Our users have found our guide very useful and I thought it would be a great resource for your page: http://sharronmurray.squarespace.com/

I would appreciate it if you could review our request and consider adding this visual representation of the effects of alcohol to your site or sharing it on your social media feeds.

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August 17, 2014 | Unregistered CommenterMaggie Danhakl

Hi,

I hope all is well with you. Healthline just published an infographic detailing the Effects on the Body of Alcohol. This is an interactive chart allowing the reader to pick the side effect they want to learn more about.

You can see the overview of the report here: http://www.healthline.com/health/alcohol/effects-on-body

Our users have found our guide very useful and I thought it would be a great resource for your page: http://sharronmurray.squarespace.com/

I would appreciate it if you could review our request and consider adding this visual representation of the effects of alcohol to your site or sharing it on your social media feeds.

Please let me know if you have any questions.

All the best,
Maggie Danhakl • Assistant Marketing Manager

Healthline • The Power of Intelligent Health
660 Third Street, San Francisco, CA 94107
www.healthline.com | @Healthline | @HealthlineCorp

About Us: corp.healthline.com

August 17, 2014 | Unregistered CommenterMaggie Danhakl

Hi Maggie,

Thank you.
Have shared and will include in a post on lifestyle habits.
Sharron

August 18, 2014 | Registered CommenterSharron E. Murray

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