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Migraine in “We Were Liars”

“I cannot recall a time when a narrator has brought this much focus on migraine disease with such apt descriptions,” Janet wrote in her Migraine.com review of the novel We Were Liars.

I had similar thoughts when I read the book a month ago (at Janet’s recommendation). The descriptions were so good that I highlighted passage after passage, eager to share them with you. Here are a couple:

“Welcome to my skull. A truck is rolling over the bones of my neck and head. The vertebrae break, the brains pop and ooze. A thousand flashlights shine in my eyes. The world tilts. I throw up. I black out. This happens all the time. It’s nothing but an ordinary day.”

“‘You have no idea what it feels like to have headaches like this. No idea. It hurts,’ I say—and I realize tears are running down my face, though I’m not sobbing. “’It makes it hard to be alive, some days. A lot of times I wish I were dead, I truly do, just to make the pain stop.’”

Then I got to the twist for which the book is known. The power of these incredible descriptions was diffused by a stereotype that, while not untrue, is a major contributor to migraine’s stigma. So much so that all the positive regard I’d had for the book’s depictions of migraine was gone. For me, no matter how elegant and accurate the descriptions, they can’t cancel out the harmful message I fear the book ultimately spreads about migraine.

I was so eager to have a wildly popular book raise some awareness of the severity of migraine that maybe I expected too much. Still, I’m disappointed. I’d like to say more, but don’t want to risk spoiling the book for anyone — it’s a great read.

That’s my take, which is probably a minority opinion among migraineurs. Have you read We Were Liars? What do you think of how it depicts migraine? (No spoilers, please!)

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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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Opioids Under-Prescribed Due to Addiction Fears?

Fear of Addiction Means Chronic Pain Goes Untreated, according to an NPR story that aired last weekend. While there’s definitely some truth to the headline, it obscures the nuances of physicians’ reluctance to prescribe opioids (a.k.a narcotics) for chronic pain in general and headache disorders specifically (particularly migraine).

Opioids were originally prescribed for short-term pain, like from surgery or an injury, or for use in end-of-life care. Chronic pain is a serious medical issue that is both under-treated and has limited treatment options, so it’s understandable that opioid painkillers filled that void, especially because opioids are the only source of relief for many people with chronic pain. Unfortunately, they began to be prescribed for long-term use before there were a lot of studies on their long-term effects. Now that research is catching up, this use is being questioned.

Beyond addiction, other potential problems for using opioids for chronic pain include opioid-induced hyperalgesia, tolerance and the systemic effects of long-term use. Opioid-induced hyperalgesia, when opioid use increases a person’s sensitivity to pain, is one concern. Tolerance — which requires taking increasingly higher doses of the medication for it to still be effective — is another. The repercussions of regular (and often increasingly higher) doses of opioids could have on the body’s systems should also be considered.

Headache disorders have additional issues. Rebound headache (medication overuse headache) is the most widely addressed concern. In addition, the American Migraine Prevalence and Prevention study found that using opioids more than eight times a month can cause episodic migraine to transform into chronic. (Diana Lee recently reported that there may be a difference between short-acting opioids and long-acting ones and that long-acting opioids may be OK for long-term pain management for people with chronic migraine.) Headache specialists also believe opioids impair the efficacy of preventive medications.

On top of all that, opioids aren’t even particularly effective for any type of head pain. In the video I shared last week, headache specialist Mark Green explained why:

“Part of the reason for that is there are fundamental differences in the chemistry of head pain compared to visceral pain. In the receptors subserving head pain, we really don’t have a lot of opioid receptors, so the upside for the use of opioids is rather low. That’s why we use, for example triptans and ergots. Those serotonin receptors are very well represented on those receptors that subserve headache.”

What do I get from all this?

  • Boiling down concerns about opioid use to a fear of patients becoming addicted is an oversimplification.
  • There are a lot of unknowns about opioid use for chronic pain. As more research is published, the less they seem like a good long-term solution.
  • Head pain is different than bodily pain and migraine may different still.
  • Chronic migraine isn’t a chronic pain disorder, nor are chronic cluster headaches. I don’t know where tension-type headache falls on the continuum, but I’m inclined to believe it’s more on the side of other types of headache disorders.
  • Using opioids can significantly alter treatment for an underlying headache disorder.
  • Mostly, I’m left with a lot of questions (and so are researchers and physicians).

I’m not anti-opioid, but want anyone who takes them for headache disorders to know the facts and to be very, very careful. Ideally, your headache specialist would be the prescriber, but fewer and fewer are willing to prescribe opioids (not out of fear of addiction or the DEA, but because of the ramifications for treating the condition you’re using opioids for in the first place). If your headache specialist won’t prescribe them, still be honest with them about how often you use them and at what dose — without that information, your specialist can’t treat your headache disorder properly.

Note: I’ve used words like “potentially” and “can” a lot in this post because not everyone’s the same. It’s important to be aware of the risks, but also to remember that not everyone will have all the same issues.

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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.