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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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On Suffering and Chronic Illness

While I don’t like to be called a migraine sufferer, What Suffering Does, a NY Times op-ed by David Brooks, resonated deeply with my experience of chronic illness.

There’s the awareness that despite desperately wishing for things to change, illness is not an issue of mind over matter:

[S]uffering gives people a more accurate sense of their own limitations, what they can control and cannot control. When people are thrust down into these deeper zones, they are forced to confront the fact they can’t determine what goes on there. Try as they might, they just can’t tell themselves to stop feeling pain, or to stop missing the one who has died or gone.

The recognition that loss of control doesn’t have to equal helplessness and that we do have control over how we respond to strife:

They are not masters of the situation, but neither are they helpless. They can’t determine the course of their pain, but they can participate in responding to it. They often feel an overwhelming moral responsibility to respond well to it… placing the hard experiences in a moral context and trying to redeem something bad by turning it into something sacred.

“Moral responsibility” and “turning it into something sacred” sound like they’d require grand gestures that are beyond the ability of someone with a debilitating chronic illness, but many of us turn our suffering into something sacred in the everyday. We do it by keeping others in our thoughts or prayers, by not judging someone whose behavior is changed by illness, by reassuring the friend who is new to chronic illness that she’s doing everything right, by telling the person who pays for prescription drugs out-of-pocket about drug discount cards and prescription assistance programs, and in millions of other ways.

The line from the op-ed that most spoke to me was,

Recovering from suffering is not like recovering from a disease. Many people don’t come out healed; they come out different.

By definition, chronic illness is not something a person heals from, but it certainly changes everyone who lives with it. It’s up to each one of us to decide what that change will look like in our own lives. I will never say chronic illness is a gift, but I do like who I’ve become because of it.

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Migraine & Pregnancy: 5 Must-Read Articles

Most pregnant women want to avoid all medications during pregnancy, but that’s not always practical with a health issue like migraine. Doing so can lead to other problems, like severe weight loss, that could be even more dangerous than taking certain medications. These must-read articles answer questions about migraine during pregnancy and breastfeeding, which medications are safe, weighing your migraine management options and more.

Migraine and Pregnancy
A brief overview migraine and pregnancy, this article from Beth Israel Deaconess Medical Center in Boston starts with advice for women considering becoming pregnant and answers common questions about migraine during pregnancy and while breastfeeding.

You Are Pregnant (or Planning to Have a Baby)
Is your migraine frequency or severity likely to change during pregnancy? Can having migraine attacks while pregnant harm your baby? The National Headache Foundation shares statistics and answers questions.

What To Expect With Pregnancy and Delivery
This excerpt from The Woman’s Migraine Toolkit provides detailed and easy-to-understand explanation how hormones during pregnancy and after delivery can impact migraine. (Diana Lee of Somebody Heal Me, who is expecting a baby in July, recommends this book.)

Expert Answer: How can I manage my migraines during pregnancy?
A headache specialist talks about the importance of creating a migraine treatment plan for use while pregnant, which medications are safe to use during pregnancy and what alternative treatments a pregnant woman can consider trying.

A Migraine Mama’s Advice on Balancing Medication Usage During Pregnancy and Breastfeeding
A chronic migraineur reconsidered her resolve to avoid all migraine medications during pregnancy after her migraines spiraled out of control and she lost 15 pounds before her first OB appointment. She describes the emotional wrangling of finding the balance between getting the treatment she needed without endangering the pregnancy.

And remember, your particular situation may be different than those addressed in any of these articles. Work with your doctors to find the safest, most effective treatment approach for you. Having migraine attacks while pregnant isn’t harmful, but they are a physically stressful event. Your body is already stressed enough with the changes of pregnancy, so it’s extra important to take good care of yourself and treat your migraines appropriately.

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Cefaly Insurance Coverage Update

“Is Cefaly covered by insurance?” is the question I’ve been asked most since the device was approved. The answer is probably not, but your insurance company may cover it as they would any TENS unit.

Cefaly does not currently have a procedure code (also called a CPT code), which is required for an insurance company to cover any medical device or procedure. A company representative told me FDA approval is the first step in the long process of getting a CPT code. They expect it to be one to two years before Cefaly has a code.

Hope is not lost! Some migraineurs have found that their insurance companies will cover Cefaly the way they would any TENS unit using an established code for those devices. Google tells me those are E0720 for a two-lead device and E0730 for a four-lead device. The problem? Cefaly only has one lead, which may trip up some insurance companies.

HomeCare, a magazine for the home medical equipment industry, says that to have a TENS unit covered for chronic pain, your doctor must submit a statement of medical necessity and “must determine that the patient is likely to derive significant therapeutic benefit from continuous use of the unit over a long period of time. The physician’s records must document a reevaluation of the patient at the end of the trial period and indicate how often the patient used the TENS unit, the typical duration of use each time and the results.” Unfortunately, the article also says TENS units are rarely considered medically necessary for headache disorders. (This is general industry information. What you encounter with your insurance company may be different.)

Don’t give up without checking with your own insurance company. Enough migraineurs have received positive responses that it’s worth a try. Please let us know if you have success and, if possible, which code your insurance company is using.

Update on Cefaly availability: As of April 9, 2014, the order page of Cefaly’s U.S. website says, “Order intakes on hold for a week because of limitation in the supply chain.” This notice apparently went up today, so I hope that means you’ll be able to order from them next week. I’ll keep an eye on the site and let you know if anything changes.

April 15, 2014: Cefaly has removed the “not currently taking orders” notification from their website. They appear to now be shipping previously ordered products and taking new orders.

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Pretending

“Pretending to be happy when you’re in pain is just an example of how strong you are as a person.” When I first came across that quotation on Facebook, I wrote a rather clumsy post about it. Once the anger wore off, I was able to write about it in a gentler, more nuanced way. To read a less dogmatic perspective, take a look at Pretending to Feel Fine, which was published on Migraine.com today. Here’s an excerpt:

[This approach] seemed to work. I did well in school and at work, I made new friends. My friends, co-workers, bosses and even family didn’t pity me when I increasingly canceled plans, didn’t follow through on promises, or didn’t return phone calls. They merely thought I was flaky, unreliable, self-centered and uncaring. No one understood my behavior as a consequence of debilitating illness. How could they when they didn’t know how sick I was?