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.
Thinking about trying a nerve stimulator to treat chronic migraine? Ask tons of questions beforehand to help ensure you’re making the most informed decision possible. I’ve brainstormed questions to ask your doctor, other patients, and even yourself in Nerve Stimulation: Questions to Ask, my latest post on Migraine.com.
You can learn about my experience with occipital nerve stimulation and what the research says in my posts on Migraine.com from earlier this summer. If you’re curious what I had to say when I still thought mine worked, check out the archive of my nerve simulation posts on The Daily Headache.
I’ve never felt more like a guinea pig than I did when I had my occipital nerve stimulator implanted almost 10 years ago. Read about the experience, and my thoughts about it all these years later, in Migraine & “The Box” — Feeling Like a Guinea Pig With an Occipital Nerve Stimulator on Migraine.com.
The post is in response to the Migraine & Headache Awareness Month Blog Challenge question from June 12, What situation in your migraine/headache disorders treatment has made you feel most like a guinea pig or lab rat?
Stories on a plastic surgery technique used to treat migraine made the rounds this month. Most articles present the surgery as a miracle cure, though Philly.com’s article Surgery for Migraines: Help or Hokum? provides a well-balanced look at the procedure. It notes that neurologists “generally remain not just skeptical of surgery, but disapproving.” In fact, the American Headache Society issued a statement urging patients be cautious in considering surgical treatments. The statement reads, in part,:
In light of recent news reports about the growing use of surgical intervention in migraine, the American Headache Society® is urging patients, healthcare professionals and migraine treatment specialists themselves, to exercise caution in recommending or seeking such therapy.
In our view, surgery for migraine is a last-resort option and is probably not appropriate for most sufferers. To date, there are no convincing or definitive data that show its long-term value. Besides replacing the use of more appropriate treatments, surgical intervention also may produce side effects that are not reversible and carry the risks associated with any surgery. It also can be extremely expensive and may not be covered by insurance. Most importantly, it may not work for you at all.
Since the occipital nerve stimulator I had implanted in 2003 proved ineffective, I swore I wouldn’t try to find a surgical solution again. (The nerve stimulator was my third migraine-related surgery, including TMJ surgery in 1997, sinus surgery in 2000.) The nerves of a migraineur are so sensitive that anything that mucks with them seems a bad idea.
That resolve lasted until earlier this spring when I found myself wishing for a hole in my heart (which I do not have). In a comment on that post, Drew shared his story of being diagnosed with a PFO and considering having it closed as a treatment for his NDPH (new daily persistent headache). Drew wrote,
“The research on this subject has led me and my doctors to one simple reasoning of thought. The proceedure is just not worth it. There is no garantee that closing the pfo will stop the headaches in the short term or long term over your life time. There is also the very possible chance that you could suffer even more complacations from the surgey, by no means is this surgey a fix it. Remenmber it still intails your heart and messing with the bodies system.”
The wisdom of Drew’s comment resonated when, days later, I saw the stories about plastic surgery for migraine. I must admit that initially my hopes were raised as I read about the surgery — I felt pretty bad and was wooed by the thought of relief. Then I remembered Drew’s comment and my own resolve and saw the AHS’s statement. No surgery for migraine has good evidence for efficacy and any surgery has potential complications and impacts the body in many ways.
I have re-resolved to avoid any surgical “fix” until it has strong support from scientific studies. The potential problems just aren’t worth the risks. What do you think of surgery for migraine? Have you had any (and was it effective)?
Nerve stimulation, nasal surgery/septum repair, cutting muscles in the forehead and PFO closure are the surgeries commonly mentioned as headache treatments. A lot of press coverage doesn’t necessarily equal efficacy. They are all still in early phases of clinical trials. Recent opinions I’ve come across aren’t encouraging.
I’ve had two of the four — an occipital nerve stimulator and nasal surgery — and don’t intend to try a surgical treatment again. Neither surgery was effective for me and I sometimes wonder if the nerve stimulator made my migraines worse.
Surgery is so commonplace that it is normal to consider it as a remedy for so many illnesses. No matter that general anesthesia is always risky and there’s a potential for complications — including that it may worsen the condition. Not to mention that its expensive and invasive and may not even work.
I’m not saying that because my surgeries were unsuccessful yours will be too. I do caution you to take it slowly. Research the procedure as much as you possibly can. Ask your doctor every question that you have, no matter how silly or small it may seem. This is your body. The doctor may have the expertise, but you are the only one who really knows yourself.
If you have the slightest inkling of discomfort with your doctor, find someone else. If he or she tells you in your first appointment that surgery is just the thing for you, find someone else.
Although surgery may feel like your last hope, it rarely is. Few people have truly tried everything. If multiple doctors say you’ve tried everything, it’s time to get on the internet and learn what else is out there. Online forums are a great place to start. (I’m partial to The Daily Headache’s online support group and forum, but there are lots of good ones.) Maybe you’ll discover that you have tried everything; maybe you’ll find a not-so-well-known treatment works for you.