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Cefaly Availble in the US, Insurance Coverage

If you’re in the US, you can now order a Cefaly from Cefaly.us. The device itself is $295 (plus $29 for shipping) and a three-pack of electrodes is $25. You must send a copy of your prescription before they will send your order. Devices will be delivered beginning the first week of April.

Here’s what Cefaly’s FAQs currently say about insurance coverage:

Cefaly is not currently reimbursable via the social security system and therefore is not listed in the catalogue of approved medical devices. However it is becoming increasingly apparent that certain health insurance companies and mutual funds are partially funding this treatment and may do so on a case-by-case basis.

We therefore advise that you write to your insurer or health care in order to ask them if they will help you with the cost of Cefaly. Explain your migraine problem and the benefits that the device brings you. Make sure you to attach a prescription along with a copy of the invoice to your letter.

Translated: Your insurance company might reimburse you, but probably not. Sending your insurance company a letter with your receipt, as the Cefaly website recommends, is unlikely to work out in your favor. If insurance coverage is imperative for you, contact your insurance company before purchasing the device. They may refuse to cover it at all or they may allow you to submit an appeal for coverage. Be sure to ask if having your doctor send a letter of medical necessity will increase the chance that they’ll cover it.

April 8, 2014: Check Cefaly Insurance Coverage Update for current information.

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FDA Approves Cefaly for Migraine Prevention

Cefaly

(i can’t believe I’m posting a selfie with a Cefaly.)

The FDA has approved the Cefaly for migraine prevention in the U.S., according to an announcement from the agency yesterday. Purchasing details aren’t available yet, but it shouldn’t be too long since it is already being manufactured for other countries. It will be available by prescription, which I expect means it will also be covered by insurance. You can order one now at Cefaly.us. The device itself is $295 and a pack of three electrodes costs $25. You must send them your prescription before they will ship your order. I don’t know what this means for eventual insurance coverage.

Here’s an excerpt from the FDA’s press release that describes the studies the approval was based on:

The agency evaluated the safety and effectiveness of the device based on data from a clinical study conducted in Belgium involving 67 individuals who experienced more than two migraine headache attacks a month and who had not taken any medications to prevent migraines for three months prior to using Cefaly, as well as a patient satisfaction study of 2,313 Cefaly users in France and Belgium.

The 67-person study showed that those who used Cefaly experienced significantly fewer days with migraines per month and used less migraine attack medication than those who used a placebo device. The device did not completely prevent migraines and did not reduce the intensity of migraines that did occur.

The patient satisfaction study showed that a little more than 53 percent of patients were satisfied with Cefaly treatment and willing to buy the device for continued use. The most commonly reported complaints were dislike of the feeling and not wanting to continue using the device, sleepiness during the treatment session, and headache after the treatment session.

Neither of these studies are new and still have the limitation of being short-term, but I’ll reiterate that it’s worth trying out. Even more so now that you won’t have the additional expense of ordering it from Canada and your insurance may pay for it. I’ll keep you posted on it’s availability.

Here’s my experience with it, including a detailed description of what it feels like:

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Mast Cell Disorders, DAO & Food Trigger Testing

While I have no trouble writing about my emotions in relation to treatments or life with chronic illness, telling you the details of my treatment makes me self-conscious of talking about myself. Here’s an update for those of you who are curious about my mast cell disorder exploration, success with the digestive enzyme diamine oxidase, and sorting of food triggers.

Mast Cell Disorders
The mast cell specialist was kind and knowledgeable. He did a full mast cell disorder-related work up (including the fourth time in a month that I had to do a 24-hour urine collection) and a bunch of food allergy tests. Everything looked great. No mast cell disorder and all negative responses to food allergies.

Mast cell disorders aren’t too well understood, so there could be other markers to test for eventually, but I’m not concerned. When I add up the results of those tests, my symptoms, the genetic testing that showed DAO-related mutations, and my great response to DAO, I’m pretty well convinced there’s no mast cell disorder here. For which I am very grateful.

Diamine Oxidase (DAO)
Sunday marked eight weeks since I started taking the digestive enzyme DAO with every meal and I’m still doing really well with it. I use the Histamine Block
brand most often, but occasionally supplement with Histame, which has a lower dose in each capsule, for drinks or snacks. I get heartburn if I don’t eat enough calories or drink enough water when I take DAO, but that’s easy to remedy. Other than the thrill of finding something that keeps me from having a migraine every single day(!), there’s not much to tell.

Food Testing
Unfortunately, I still have migraines most days while I continue to test (and react to) foods and sort out what my other non-histamine-related food sensitivities are. As soon as I recover from one migraine, I jump back into testing foods, which frequently triggers another migraine. Testing foods seems like it would be straightforward, but it’s extraordinarily complicated. There’s the food itself, but the build up of certain naturally occurring food chemicals, types of food, and even quantity also figure into the equation. I will spare you the boring details (which my poor, sweet husband has had to listen to for months). It’s messy and confusing, but I’m making progress. I’ve never been so excited to eat kale, cauliflower or zucchini and I’m over the moon that decaf coffee doesn’t appear to be triggering migraines or other headaches.

Related posts:

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Cefaly for Migraine: Diminishing Returns & No Long-Term Relief

My early success with the Cefaly, the external nerve stimulator I told you about last summer, didn’t hold up. I used it for at least an hour a day for six months, over which time my relief from it decreased from three hours a day to no relief at all. None of the published studies on the Cefaly talk about this happening, but none of them studied its use for more than a few months.

The Cefaly can be used to stop migraine attacks in progress (and to stop other types of headaches, according to the manual, though all the published research is on migraine) or as a daily preventive. Since I have (had!) migraines every day, I hoped for both. Not only did I experience diminishing returns of acute relief, I never noticed a preventive effect. Stopping it did not increase my migraine frequency, severity or duration.

I’ve heard from about a dozen of you who tried the Cefaly. No one reported relief even as significant as I had early on and half couldn’t use the device because the sensation in their foreheads was unbearably painful. The Daily Headache readers tend to have chronic and/or severe chronic disorders, so we’re unlikely to be a representative sample. Maybe it’s less effective for people with more severe headache disorders or our propensity toward more significant allodynia (sensitivity to touch) makes it more painful than normal. (If you’re worried it will be painful for you, see if someone you know has a TENS unit you can try. The Cefaly is different than a standard unit in its electrode shape and preset programs, but you’ll get an idea of what it feels like.)

Do I rescind my recommendation? Somewhat surprisingly, no. As long as it’s in your budget (it is returnable, but you’ll be out shipping to and from Canada and a 20% restocking fee), I say go for it. We all respond to different treatments and several headache specialists have told me that even a 10% response rate in early research is encouraging. If you want to explore nerve stimulation without invasive surgery, want a drug-free treatment or haven’t had much luck with standard treatments, the Cefaly is, at the very least, worth a try.

I still have mine and will try it again soon. I’m hopeful that a few months without it will be a sort of reset.

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On a Good Day

How I’ve felt on a bad migraine day the last few months is better than I used to feel on a good day. In the fall, I wrote a bleak post describing what a good day looks like. Seeing how little I got done on a good day (what I now know was a great day for how I felt then) left me so downtrodden that I didn’t post it. Now that I’m feeling better, I’m ready to share it.

November 9, 2013

Friday I enjoyed four hours of level 3 to 4 head pain and a surge of energy. I cataloged everything I did in those four hours in an effort to illustrate what I mean by a “good day.” It’s dismal.

  • Bought two bags of groceries (drove 12 minutes round-trip). Unpacked the groceries and hung the reusable bags back in the pantry.
  • Opened, read, and dealt with six pieces of mail.
  • Entered two medical receipts into Excel for taxes.
  • Put away the dishes that were drying on the counter. Emptied the dishwasher and put those dishes away. Hand-washed knives, cookie sheets, and water bottles, then set them aside to dry.
  • Wiped down a quarter of the kitchen counter.
  • Did a moderately thorough cleaning of the cooktop. Took the burner grills and knobs off, but didn’t disassemble the burners. Washed the knobs in the sink.
  • Cleared off the rubble that collects on one particular kitchen counter. Found homes for the receipts, post-it notes, Kleenex packets, and other miscellany.
  • Did one full load of laundry and ran a small load of shirts that still had stains on them. Draped the clothes from the first load over the dining chairs because the dryer wasn’t drying properly and I didn’t have the wherewithal to clean the outdoor lint screen in the dark. Hung up the four shirts from the small second load.
  • Folded six washcloths and put them away.
  • Put a stack of folded T-shirts in the drawer.
  • Put the remote controls in the bowl on the coffee table.

This is a great day and it’s no more than an hour’s worth of work done in four. On my best days, I might get in eight hours of work; I get no more than half a dozen of those a year.

My house is not large and the clutter wasn’t particularly heavy Friday. Four hours is plenty of time to clean the house from thoroughly, from putting stuff away, to scrubbing all the hard surfaces, to vacuuming and mopping the floors. Instead, my list of accomplishments includes putting away grocery bags because even that is a triumph.

I have vastly overestimated my productivity over these last six months. I’ve said I operate at 50% of my mental or physical capacity on a my best days. Considering that I did an hour’s worth of work in four hours on a good day, 25% seems like a more accurate number.

I’m not telling you this to elicit sympathy or pity, but to illustrate just how vastly chronic migraine can affect a person’s quality of life. Even though my diet-related improvements seem revolutionary compared to days of accomplishing nothing, the improvements are meager quantitatively.

Having a migraine all the time wears a person down beyond reckoning. Even I can’t believe the impact and I live it every second of every day. Maybe that’s because I haven’t wanted to face the truth, maybe it’s because the truth is unfathomable.