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Leaning on Your Support System

“People cry, not because they’re weak. It’s because they’ve been strong too long.” The National Headache Foundation posted that on Facebook last week, right when I was wondering how much more I could possibly endure. I’d had five weeks of nearly perpetual migraine and I was well beyond the end of my wits.

Sunday night I had an epic crying session. I wanted out of this body, this cage. I was tired of having to fight to do the smallest tasks, like eating or showering. I didn’t want be sick anymore. I howled and shook with frustration and fear for hours. My sweet husband held me and told me that even if I was too exhausted to fight, he was not. He told me not to underestimate my own strength. He told me that even if my life is harder than it has any right to be, it is a life worth living. With his kind words and solid grasp, Hart reignited my courage and determination.

My illness has changed Hart’s life nearly as much as it has altered mine. He married an equal, yet now finds himself supporting us financially, running our household and taking care of me. Instead of spending evenings at concerts, movies or with friends, he makes popcorn and we watch Netflix. I try to minimize the impact of my illness on him. I’m honest with him about how I feel, but when I’m in ruts like I was last week, I tend to stop talking about it. Since I isolate myself from everyone else when the migraines are bad, Hart’s my lifeline.

Sunday’s emotional implosion was not only because I’d been strong too long; it was because I did not allow anyone else to ease the burden. I don’t know how I will overcome the desire to isolate myself when I am sick, but I can’t keep trying to manage this life on my own. Though strong-willed is one of my defining characteristics, no one can carry the weight of chronic, debilitating illness alone.

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Study: Chronic Migraine is Disabling and Severely Affects the Ability to Lead a Productive Life

The National Headache Foundation‘s American Migraine Prevalence & Prevention Study data have been reanalyzed to reveal just how debilitating chronic migraine is. Chronic migraineurs have migraine episodes at least 15 days a month and most have pain every day. Approximately one million people -– mostly women -– have chronic migraine.

Key findings of the study, from a NHF press release:

Chronic migraine remains a largely under-diagnosed and under-treated medical condition.

While the vast majority of individuals with chronic migraine (87.6%) had sought care from a healthcare professional, just 20.2% of those with chronic migraine received a diagnosis of chronic migraine, chronic daily headache or transformed migraine. Another nearly 14% were told that they had rebound headache or medication overuse headache.

Migraine-specific acute treatments were used by 31.6% of respondents with chronic migraine. Almost half (48%) of the individuals with chronic migraine were satisfied with their acute therapies. A third of those with chronic migraine (33.3%) were currently using preventive medications.

Although most individuals with chronic migraine sought medical care for this disorder, the majority did not receive specific acute or preventive medications.

One in five chronic migraine sufferers cannot work due to the severity of their condition.

Over a 3-month period, 8.2% of the chronic migraineurs missed at least 5 days of work and school. Further, slightly more than a third (33.8%) of these sufferers reported at least 5 days of significant reduction in productivity during the same time frame.

Chronic migraine severely impacts one’s ability to lead a productive life.

More than half of those with chronic migraine (57.4%) missed at least 5 days of household work, and 58.1% reported a reduction in productivity in household work for at least 5 days within the last three months.

Chronic migraineurs also reported missing out on at least 5 days of family activities within the three month period.

“With one in five chronic migraine sufferers not being able to work due to the severity of their condition, the human and economic costs to these patients, their families and their employers are staggering,” said Suzanne E. Simons, Executive Director, National Headache Foundation. “This report shows there is much work to be done to help them get the proper diagnosis and treatment they need to be able to lead productive lives.”

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Your Five Minutes Could Increase NIH Funding for Headache Research

Urge your US House of Representatives member to support increasing the National Institutes of Health’s headache research funding by sending this pre-written e-mail no later than Monday, March 17. That’s all that’s required, though you are encouraged to include a personal note on how headache disorders affect you.

According to the National Headache Foundation, “NIH grants for migraine total approximately $13M per year, representing less than .05% of the total NIH budget. Very little headache research apart from migraine is funded and the NIH has no institute, center, or study section wholly devoted to pain, let alone headache disorders.”

This letter from the Alliance for Headache Disorders Advocacy has details on the initiative:

AHDA Congressional Action Alert: Increase NIH funding for Headache Research

Dear AHDA advocates –

Well, the key moment has arrived for you to contact your Member of the US House of Representatives to take action for increasing NIH research for headache disorders.

A Dear Colleague letter was sent Monday, March 10, by Representatives Peter Welch and James Moran to all House offices, urging all Members of the House to co-sign a letter to Representatives David Obey and James Walsh. The Obey/Walsh letter requests inclusion of language that supports headache research to be appended to the FY09 appropriations bill for NIH. (For details, see the AHDA homepage.)

The more Representatives that co-sign the Obey/Walsh letter, the greater are the chances that the language will be included. The Obey/Walsh letter must be submitted with signatures by 3/19. This unfortunate deadline was a late-breaking surprise for us, so we have little more than a week to get as many signatures as possible. Please use the space below to compose your message to your Representative and urge her/him to co-sign the Obey/Walsh letter now.

We are also working on a Senate Dear Colleague letter right now and we will let you know when the time is right for you to contact your Senators too.

Through collective advocacy we will improve the care for individuals with headache disorders. Thanks very much for your help.

Best regards to you all,

Bob

Robert Shapiro, MD, PhD; Burlington, Vermont
William Young, MD; Philadelphia, Pennsylvania
Brad Klein, MD, MBA; Philadelphia, Pennsylvania
Teri Robert, PhD; Washington, West Virginia

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National Headache Foundation Answers Frequently Asked Questions

In one comprehensive page, the National Headache Foundation responds to common questions about migraine as well as tension-type, cluster, sinus, rebound headaches. The short answers include links to comprehensive information. Questions include:

  • Does weather affect migraines?
  • What are the triptans?
  • What alternative therapies are used to treat migraine?
  • What is biofeedback?
  • Are headaches hereditary?
  • What type of doctor should I see to diagnose and treat my headache?

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National Headache Awareness Week, June 3-9

As part of National Headache Awareness Week, the National Headache Foundation has identified seven healthy habits of headache sufferers. NHF’s goal is to help headache sufferers reduce headache risk and live a happy life despite headaches.

Seven Healthy Habits of Headache Sufferers

  1. Diet: Eat regular meals, avoiding foods and drinks that are known to trigger headache attacks
  2. Sleep: Maintain a regular sleeping schedule, including weekends and vacations
  3. Stress: Implement stress reduction techniques into your daily life
  4. Headache diary: Keep a headache diary of when your headaches occur, along with any triggers, and share the information with your healthcare provider
  5. See your healthcare provider: Make an appointment with your healthcare provider to specifically discuss your headache
  6. Be a partner in your headache care: Be informed, be a participant in your treatment and be an advocate for your headache care
  7. Education: Stay apprised of the latest headache news and treatment options (by reading The Daily Headache, of course!)

NHF will be hosting three podcasts this week to describe these tips in detail.

Monday, June 4
Lisa Mannix, MD, medical director of Headache Associates in Cincinnati, Ohio and an NHF board member will provide an overview of the seven habits.

Wednesday, June 6
Roger Cady, MD, medical director of the Headache Care Center in Springfield, Missouri and an NHF board member will provide an in-depth focus on the first three of the healthy habits and discuss the importance of diet, regular sleep and stress reduction in managing headaches.

Friday, June 8
Dr. Mannix will conclude the series by focusing on the remaining four healthy habits. She will discuss how to keep a headache diary, making an appointment with your doctor, being a partner in your headache care and staying educated. Judy Brown will also speak from her personal experience as a headache sufferer who has lived with headaches for years.

Adapted from a National Headache Foundation press release. (It’s a doc file, not a pdf)