Tag: complementary treatments

Books & Products, Chronic Migraine, Treatment

Cefaly External Neurostimulation Device for Preventing & Aborting Migraine Attacks

Kerrie Smyres

Cefaly, an electrical nerve stimulation device that is worn like a headband across the forehead and stimulates the nerves through the skin, is my latest experiment in preventing and aborting migraines. There’s a ton of information to share, so I’m breaking it up into several posts, starting with the basics. If you can’t wait to read about the study, here’s Medscape’s writeup: Neurostimulation Effective in Migraine Prevention. (You can get a login from Bugmenot.)

First off, what the heck is Cefaly? It is basically a TENS unit with an electrode shaped to cover the peripheral branches of the trigeminal nerves in the forehead. Instead of being able to adjust the settings freely as you do on a TENS unit, Cefaly is pre-programmed with three therapeutic settings, one for aborting migraine attacks, one for preventing them, and one for relaxation.

According to Cefaly’s website,

Cefaly treats migraine pain with neurostimulation. A stimulus that limits pain signals from the nerve centre by working on the trigeminal nerve where migraine headaches start. The patented Cefaly treatment changes the trigger threshold of migraine headaches. As the pain threshold becomes harder to reach, migraine headaches are less frequent, less painful, and simply disappear. Cefaly offers patients suffering from migraine pain and headaches an efficient electrotherapeutical system delivered via an extremely comfortable, ergonomic and simple-to-use medical device.

An easy-to-follow marketing video:

Harder to follow without knowledge of scientific terms, this video provides a high-level explanation of the science behind the device:

While the marketing materials focus on migraine (and that’s what my experience represents), the manual recommends its use for tension-type headache, cluster headache, and trigeminal neuralgia. It also claims to reduce stress, promote relaxation, and ease the symptoms of sinusitis, though it does not treat the underlying sinus infection.

Cefaly has not been approved for sale in the US and is is not available here. It is available in Canada, Australia, and Europe. I ordered mine from Costco Canada for $230 USD and had it shipped to a friend in Canada who sent it on to me, though I’m not sure this is strictly legal. My headache specialist said his US patients have ordered it directly from Roxon.ca for $299 USD and Oximetry.ca for $340 USD. Although not inexpensive, $230 is reasonable considering the cost of various preventive and abortive meds.

Replacement electrodes come out to $10 each when shipping is factored in. The life of electrodes is listed at 10 uses in the manual, though reviewers on Costco.ca list various strategies for extending their usefulness. I wash my hands and forehead well before applying the electrode and store it in a Ziploc bag with a cotton ball soaked in alcohol next to it. At 11 uses, my original electrode still seems to be working fine. Even if it costs $1 in electrodes each time I use it, that’s still a savings over what I pay for triptans.

There’s enough hype about Cefaly on the internet that I wouldn’t have even tried it had by headache specialist not recommended it. It just seems too good to be true. At the time I saw my headache specialist in May, he had suggested it to 20 of his patients with intractable chronic migraine and half reported at least some relief from it. One had just written him a letter saying the results were close to miraculous for her. Because I trust my headache specialist immensely, I went for it.

Writing this post, I discovered that headache specialist Alexander Mauskop questions whether Cefaly provides advantages over readily available $50 TENS units. While I could have done with saving some money, I derive comfort from the pre-set programs and am not sure if I could have found the right therapeutic settings on my own. If you already have a TENS unit, it might be worth trying it out on your forehead!

I’m still sorting out the kinks and it is too early to establish any preventive effect, but the device has definitely aborted migraine attacks for me. In Monday’s post, I’ll detail my first week with it.

Chronic Migraine, Coping, Diet, Treatment, Triggers

Trusting Myself With the Failsafe Diet

Kerrie Smyres

Have I lost my mind? This is what I wonder daily when I consider this low amine, low salicylate, and additive-free diet that I’m still on. I mean, seriously. I’ve severely restricted what I eat based on guidelines from one hospital in Australia, which uses the diet to treat behavior problems in children, not migraine or headache. I rely on The Failsafe Diet Explained for accessible, concise information about the diet, a website written by someone only known as alienrobotgirl who doesn’t share her background or credentials.

“Trust yourself” is the best migraine (and life!) advice I’ve ever received, and it is what I’m trying to do with this diet. Trusting that I know what I feel like on a baseline diet of chicken, unenriched white rice, and gluten-free oatmeal. Not just an overall pain rating, but where the pain is located and what it feels like, how much energy and stamina I have, how dizzy and nauseated I am not. And trusting that I can identify how those things change when I test foods that don’t agree with me.

Last week I tested short grain brown rice. Within 24 hours, I had the most painful migraine I’ve had in months. While it seems impossible that brown rice could trigger a massive migraine, there were no other obvious variables at play, not even weather. This is insufficient evidence for any scientific trial, but I know how I felt. I’m not going to swear off brown rice forever, nor am I going to preach to the world that it is evil. I’m simply going to be aware of how my body seemed to react and avoid it for now.

This diet is a wacky experiment with variables that are impossible to isolate. Part of me wants to say it is all crap and move on. But I cannot deny how much better I have felt on it. I’m a poster child for intractable chronic migraine. If something decreases my head pain and isn’t going to hurt me (once I improve my nutrition), then I’m going to stick with it and slowly reintroduce foods to test them, rather than ditching it all and eating whatever I want.

I’m not going to declare that the Failsafe diet is be the solution for everyone (nor am I sure it is the solution for me), but maybe there’s something to it for some of us with refractory migraine. Scientific studies show that some people have trouble processing lactose or gluten. Is it too far-fetched to believe that other components of our food could be difficult for some bodies to process?

I’m still skeptical, but I’m also still on the diet. I’m the only one who knows how I feel — that makes me the expert here. I have to trust myself on this one.

Coping, Mental Health

Practicing Mindfulness, Remaining Peaceful During a Potentially Fraught Migraine Attack

Kerrie Smyres

Tuesday I was at the edge of a precipice, the fear-filled obsessive thoughts were trying to lure me over. Instead of believing, as I did when I wrote Begging & Bargaining With the Migraine Gods, that a four-day (ultimately five-day) migraine attack following a good week was proof that I was about to tumble into the depths of migraine and depression, I practiced mindfulness the last two days as if my life depended on it. Instead of giving into the churning worry, I took many deep, calming breaths and continually brought myself back to the moment. I took the hamster off the wheel time and time again.

I told myself: “Nothing is permanent. How I felt last week does not matter today, how I feel today does indicate what tomorrow (or the next week, next month, next year) will be like. What I have or haven’t felt in the past or even right now does not determine what may or may not happen. I only have today, right now, this moment.”

Whenever I began to despair, I went through it all again. And it worked. Instead of my thoughts spiraling into bleakness, I stayed grounded. I did not sink into the pit of depression that was calling to me. When the migraine lifted, I felt like my body had been through a wringer, but my mind had not.

Since learning mindfulness techniques five years ago, I’ve employed them many times to cope with migraine and depression, though never in such an intense, heavy-duty way as I have this week. The potential for emotional turmoil in this attack was immense, but I avoided the “what ifs” and remained peaceful. That’s good medicine.

Chronic Migraine, Coping, Diet, Treatment

RPAH/Failsafe Diet for Migraine & Headache

Kerrie Smyres

The low histamine and salicylate diet that seems to be helping me is referred to as either the RPAH diet or the Failsafe diet. Originally developed by the allergy unit of Royal Prince Alfred Hospital in Australia (that’s the RPAH part), the diet was popularized under the name Failsafe by a woman whose daughter was helped by RPAH. The name Failsafe comes from the diet being free of additives and low in salicylates, amines (including histamine and tyramine) and flavor enhancers.

Calling the diet “flavor-free” sounds snarky, but it’s an easy and accurate summary. Naturally occurring food chemicals are responsible for the flavor in foods. Without them and without artificial flavors and chemicals, the diet is pretty bland. However, it is not a permanent dietary change. The idea is to cut out all these possible food chemicals for two to four weeks, then slowly add them back in, testing to see which ones are problematic for you.

This diet was developed for treating behavior problems in children. You’ll find people online saying the diet has helped them with a wide variety of health issues, from eczema to migraine and headache to heart palpitations. All the evidence is anecdotal, but if you’re really sick and no conventional or alternative treatment seems to help, it is worth a try.

The diet is drastic: check out this two-page list of allowed foods (PDF). This list, which I printed and keep on my coffee table, includes common pitfalls and mentions other chemicals in allowed foods. Even though potatoes are allowed, I discovered this week that I react to them, perhaps because they have naturally occurring nitrates. Working with a nutritionist is the best way to maintain proper nutrition without losing your mind.

Where to learn more:

Failsafe WordPress Blog: This blog is a superb resource and is where the aforementioned two-page list comes from. It is really all you need to get started on the diet.

RPAH on Food Intolerance: The original source, which doesn’t have a ton of information online, but the overview is particularly helpful. You can order the diet handbook from them for about $80 (including shipping from Australia), but it doesn’t seem necessary.

Food Intolerance Network: This website is run by the woman who coined the name Failsafe. The amount of information is a bit overwhelming, but the site answers a lot of questions. Check the US shopping list (PDF) for specific allowed foods.

Allergy Friendly Food: I ordered this book used from Amazon (much less expensive than ordering it directly from RPAH) and reference it a lot. This and the Failsafe WordPress blog are my go-to resournces.

The Failsafe Cookbook is good if you’re looking to get the most flavor possible while on the diet. I bought this book, but haven’t used it because many of the foods (like nuts and dairy) are ones I’m avoiding for other migraine-related reasons.

Keep in mind that I haven’t started the “challenges” yet. Once I begin testing which foods/food chemicals I can tolerate, my list of recommended resources may change. Also, most of the information is from Australia, so product information isn’t always relevant and you may need to do some translating.

After writing this all up, I’m struck by the fact that I’m not following the RPAH/Failsafe diet, although it was my starting point. Because of a stomach virus, the results of an ELISA food allergy test, and foods I’m pretty sure are migraine triggers for me, I’ve eaten mostly chicken and rice for the past week. My head feels better than it has in a decade, but this is not a healthy diet for the long-term. I’m definitely scheduling an appointment with a nutritionist.

P.S. In your reading about the diet, you’ll see toiletries mentioned. Many body and beauty products contain salicylates and histamine and it is recommended that you avoid those as well. I’m working on another post about that.

Chronic Migraine, Diet, Treatment, Triggers

Revamped Migraine Elimination Diet: Avoiding Histamine & Salicylates

Kerrie Smyres

“Immensely frustrating” sums up my experience with the migraine diet I began in January. It seemed to make no difference, but I haven’t known for sure because the high dose of magnesium I started a few weeks later did help. Reintroducing foods is nearly impossible as I can’t tell if any particular one is a migraine trigger or not since I still have a migraine nearly every day. About three weeks ago, a reader’s comment got me thinking and researching: Maybe I do have food triggers, but they aren’t the ones that are usually implicated in migraine.

It all started with this comment from reader Bibi on A Gluten Connection?:

My migraines get worse with wheat as well, but a gluten test at the doctor’s was negative. Genny Masterman (What HIT me?) writes, that there is histamine in yeast so that might cause migraines. I feel a lot better eating less histamine rich and histamine releasing foods.

This caught my eye because the only prescription migraine preventive that’s ever helped me is cyproheptadine, an antihistamine. And physicians don’t know exactly why it helps with migraine. Furthermore, my head often hurts worse after I eat, no matter the food — a phenomenon no doctor of any specialty has been able to explain to me. This pieces came together when I learned that that some foods contain histamine, that others cause histamine to be released in the body, and that the body releases histamine as part of digestion?

Researching histamine intolerance led me to discover that some people have a sensitivity to salicylate, a naturally occurring food chemical. More light bulbs turned on when I discovered that corn and olive oil, both of which have triggered migraines for me, are high in salicylates, as are some of my favorite vegetables. Vegetables that I have been consuming in mass quantities since starting the migraine diet.

There is so much to tell you and so much I have yet to learn and assimilate. Most of the information on histamine and salicylates is anecdotal and unscientific. The health ailments that people claim can be treated by eliminating these (and other) food chemicals from one’s diet range from rashes to ADD and ADHD to migraine to anxiety and depression. It is precisely the kind of topic I would normally dismiss as pseudo-scientific babble. Except that it makes logical sense given the years of unsuccessful treatments and medications I have tried and that I seem to feel worse the more healthful my diet is.

I started the elimination diet last week and felt better than I have in literally a decade, even though the weather was stormy. I’m not doing so well this week, whether it is because I’m in the “withdrawal symptom” phase of the diet, still eating forbidden foods while trying to sort out the details of the diet, or being worn out by Saturday’s party, I’m not sure. Possibly all of the above — or that my good spell last week was a blip completely unrelated to the diet. There’s always that infuriating explanation.

I honestly believe I’m onto something here. I’m looking forward to telling you all about it, but I’ve reached my limit of ability with this current migraine. Here are a few links to get you started: