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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?

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No Treatment is Guaranteed Forever (But I Really Hope it Lasts)

Like an athlete who knows all the clichés to tell the press, I say all the right things about my recent migraine reprieve. The improvement may not last… I’m taking it day by day… No treatment is guaranteed to work forever… Sometimes I even believe myself.

When my migraine pain hit a level 6 last week, I didn’t panic. I still have migraines most days and even though the pain rarely even hits a 5, I know that more painful migraines could always resurface. I can handle it. For a day. After that level 6 pain was followed by three more days with level 5 pain, I officially freaked out.

Days when level 6 pain is a cause for celebration could come again. (Writing that sentence made my stomach turn.) I got through it before and I will once again. But I really, really, really don’t want to have to.

Last week’s migraines were likely hormonal, so they’re probably not here to stay. This is somewhat reassuring, but I couldn’t rest until the stretch of more severe migraines let up. Even now, after a couple days with little pain, fatigue or brain fog, I’m still more nervous than I was two weeks ago.

It’s not that I’m obsessing over future uncertainties, but I’m wary of making plans. I have some great ideas for TheraSpecs that require a long-term commitment of physical and mental energy. I’m also considering moderating Migraine.com’s forums. There’s no problem with doing either one right now, but what about three months from now? How about next year? Severe daily migraine attacks were the story for so long that it’s hard to believe they won’t return.

I don’t ask for much. I just want work to consistently, keep my household fed and running, and have fun with my loved ones. Having a taste of that life has been so amazing that I’m walking around like someone newly in love. Back to the (true) clichés, I’m grateful for every day, living this life to the fullest, focusing on the now, enjoying life in the moment. But I can’t deny that I will be devastated when (if?) it stops.

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Remembering Pain (with Awe & Amazement)

People say that humans can’t remember the physical sensation of a painful event after it has happened. We can remember the emotional and cognitive experiences, but not the actual physical pain. I can’t find solid evidence for whether this commonly held belief is true, but I’ve just tested it and have to say that it is for me.

Last week I had the first level 6 migraine I’ve had in months. The worst of the pain only lasted an hour, but I spent that hour marveling at how much pain a level 6 migraine could bring. Level 6! That’s at the LOW end of my severe pain scale. For many years, level 6 pain was a reprieve from higher daily pain levels.

When I got beyond thinking “Wow, migraines really hurt,” I moved onto the question that continues to baffle me: How in the world did I survive? This quotation from Anna Quindlen that I shared in The Daily Slog of Chronic Migraine provides a partial answer:

And then sometimes we become one of those people and are amazed, not by our own strength but by that indomitable ability to slog through adversity, which looks like strength from the outside and just feels like every day when it’s happening to you.

I survived because this was the normal life that I slogged through each day.

I survived because the alternative is a choice I wasn’t willing to make.

I survived because I am stronger and more courageous than I ever thought possible.

From the many readers I have heard from over the years, I know these traits aren’t unique to me, but are common among those who live with a headache disorder, chronic pain or chronic illness. You and I and everyone else who wakes up with debilitating pain and illness each day — we’re pretty incredible. Whether or not we go to work or make dinner or even get out of bed, we overcome the insurmountable every single day. We are awe-inspiring.

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Let-Down Headaches & Migraines

Have you ever gotten through a super-stressful time without a headache or migraine only to be knocked out by one when the stress lets up? Although this is a pretty common phenomenon among people with headache disorders, the evidence has mostly been anecdotal. In a study published in the journal Neurology today, researchers found that a person’s risk of getting a migraine is nearly five times higher in the first six hours after stress lets up and this let-down effect lasts up to 24 hours.

No one knows exactly what’s happening biologically to cause this to happen, but one possible explanation is that a person’s cortisol levels increase during stress. This hormone reduces pain and helps to shield you from a migraine or headache. Cortisol levels drop when the stress is released and so does its protective effects.

Read more about the study and recommendations for avoiding let-down headaches, in my post on Migraine.com, Stress & Let-Down Migraines.

(The study was specifically on migraine, but people with other types of headache disorders have told me they experience let-down headaches as well, so this information could be useful even if you don’t have migraine.)