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What Are YOUR 30 Things About Living With Migraine or a Headache Disorder?

Migraine and headache disorders 30 Things memeYour early response to the 30 Things meme is so exciting! I love learning about how you all cope with migraine, CDH, and NDPH and know that other readers will learn much from you (and hope people with other headache disorders will be represented, too). Some responses have even brought me to tears, like:

“My life is not defined by my migraine disorder. Though it is a daily part of my life, I refuse to give it the upper hand. I demand that, if it is going to take from me, and it does, it will also give to me – wisdom, strength, faith, and compassion to walk this life better than I was before it came along.”Take & Give

This reader’s insistence on gaining something from migraine is a wise approach to retaining the upper hand. So often, refusing to give the upper hand is synonymous with barging through life as if in perfect health, which often leads to worsening symptoms. Instead, this reader recognizes the loss and limitation of having migraine, but also what can be learned and gained from it. It is wisdom I try to live by, though I’ve never described it so eloquently.

Be sure to check the 30 Things Meme category and Twitter and Facebook for more insight from readers. To keep you from being overwhelmed by 10 times as many posts as usual, reader submissions are not going out by email, in RSS feeds, or on the homepage of The Daily Headache. I’ll be highlighting comments throughout Migraine and Headache Awareness Month, which starts June 1, but there’s no way I’ll be able to share them all with you.

Will you share your 30 things? Here are the instructions and links to questions: Migraine and Headache Disorders 30 Things Meme. You can tell your story and remain anonymous, if you choose. (You need to put your name and email in the form to post, but I’m the only person who will see them and I won’t send you spam.) It’s a great chance for a short reflection on your life with a headache disorder. And, each story has it’s own URL, so you can send the link to friends and family, if you wish.

P.S. I’m putting together a contest from Migraine and Headache Awareness Month and will draw winners from 30 Things submissions. I’ll share details next week.

 

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Oxygen for Cluster Headache: Ask Your Senator to Sign!

A few hours remain to ask your senator to sign the letter requesting Medicare to reconsider covering oxygen for cluster headache! Please take 60 seconds to do so: just follow this link. The deadline for senators to sign has been extended to tomorrow, Thursday, May 22 at 5 p.m. ET.

The following senators have already signed on:

  • Coons (D-DE)
  • Johanns (R-NE)
  • Inhofe (R-OK)
  • Durbin (D-IL)
  • Tester (D-MN)
  • Warren (D-MA)
  • Markey (D-MA)
  • Fischer (R-NE)
  • Merkley (D-OR)
  • Manchin (D-WV)
  • Pryor (D-AR)

Several more are on the verge of signing, but need a little encouragement. Please make your voice heard — it will literally take a minute to improve the lives of people who are severely disabled by this horrendously painful headache disorder.

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An Urgent Request for Cluster Headache Treatment

Oxygen is one of the few effective cluster headache treatments, a viciously painful headache disorder that can be disabling. Several years ago, Medicare decided to stop covering it for cluster patients. The American Headache Society appealed to no avail. Now, Nebraska Senator Johanns and Delaware Senator Coons are trying to get the decision reversed and are currently circulating a letter for other senators to sign. The more senators who sign the letter, the higher the chance of success.

Please contact your senator TODAY to ask them to sign the letter requesting that Medicare reconsider covering oxygen for cluster headache treatment. And I do mean today — senators must sign the letter before 5 p.m. ET on Monday, May 19 Thursday, May 22. All you have to do is follow this link, fill out the form and click “submit.” The next page lists your senators as recipients and has a letter already written. You can edit the letter, if you’d like, or just add your name at the bottom and click “submit.” That’s it. I just did it and it literally took less than a minute.

Even if you don’t have cluster headache, please submit a request in the spirit of solidarity. Any recognition of the severity of any headache disorder and improving access to treatment is a win for all of us.

5/19/14: The deadline for senators to sign has been extended from today to Thursday. If you haven’t submitted your comment, you still have time! As of 8 p.m. ET today, nine senators have agreed to sign the letter.

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Tell Social Security to Include Headache Disorders in Disability Benefits: Take Action TODAY!

speak up for Social Security Disability benefits for headache disordersApplying for Social Security Disability benefits is a complicated battle for people with headache disorders. The process can last years and rulings often go against the patient. One reason for this is that the Social Security Administration’s official criteria to qualify for benefits does not include headache disorders as potentially disabling.

The Social Security Administration is currently revising the criteria for neurological disorders. Despite urging from several members of Congress and the Alliance for Headache Disorders Advocacy, the administration has said they will not include any headache disorders in the revised criteria. Without this inclusion, people who are disabled by headache disorders will continue having to fight for years and through numerous appeals for benefits they may not ultimately receive.

You have until April 28, 2014 to help change this. Write the Social Security Administration TODAY on the neurological revisions comment page. Submitting your comment directly to the administration is the most effective action you can take, but you can also voice your support by signing this petition. And please ask anyone you know who cares about someone who is disabled by a headache disorder to submit a comment to the administration.

Want to learn more? Read Speak Out for Migraine & Social Security Disability Today by patient advocate and lawyer Diana Lee.

Note: Be sure to leave your comment on the Social Security Administration’s website, not as a comment on this The Daily Headache post. While I always appreciate your comments, only those submitted through official government channels will count.

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Identifying & Treating Sex- and Orgasm-Related Headaches

Posts about sex-related headaches are among the most frequently read and commented upon on The Daily Headache. Want more information about these headaches? Here are two must-read articles:

Preorgasmic and Orgasmic Headaches Are Not Migraine explains primary sexual headache (PSH), which are headaches that accompany sex but are not related to a headache disorder like migraine or cluster headaches, and describes treatment.

Sex as a “Cure” for Migraine or Cluster Headache? What’s the Deal? shares the statistics on sex decreasing or increasing migraine or cluster headache pain.

Only your doctor can determine whether your sex- or orgasm-related headaches are a primary disorder or part of another headache disorder. Whether you have experienced headaches in the past or not, it is important to see a doctor to get the correct diagnosis and treatment.