Chronic Migraine, Coping, Diet, Treatment

RPAH/Failsafe Diet for Migraine & Headache

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, Coping, Diet, Treatment, Triggers

2012: A Year of Remarkable Personal Migraine Progress

Exactly one year ago tomorrow, I had a massive breakdown. Sobbing, I proclaimed that I wanted out of this life. I didn’t want to fight anymore; I didn’t want to live with chronic migraine any longer. I even wished for cancer so that I could choose to not treat it, thus dying without technically committing suicide.

Today, my head pain is at a level 4, which is the highest the pain has gotten in a week. In the past four months, the pain usually topped out at a 5, occasionally a 6. Still far from comfortable, that’s way better than daily pain that hits a level 7 or 8, where I was last January. I don’t know how these pain ratings appear to anyone outside my body, but to me, pain reduction of even a single number is cause for celebration.

In the 11 years that chronic migraine has been the focus of my life, last year was the first in which I made significant progress in reducing the severity of attacks. I tried more than three dozen medications in that time and countless other Western and alternative treatments and diets, none of which had any effect. To see any progress is amazing to me; to now be at a place where I expect even more improvement than I currently have experienced is astonishing.

Though you’ve read about my progress through the year, here’s a summary of what’s working for me:

Magnesium: Although I had been on magnesium before with no success, I noticed an improvement  increasing the dose to 700 mg. After trying IV infusions to see if they would be more effective (they weren’t), I ultimately pushed my daily oral dose to 1,000 mg.

Cyproheptadine: The starting dose of 4 mg was enough for me to feel a bit better. Each 4 mg increase brought additional relief until I hit 16 mg, which didn’t seem to be any better than 12 mg. I’m back at 12 mg, though will probably try increasing it again, to be sure that I wasn’t just having a bad week the first time I tried 16 mg.

Diet: It has been a year since I started an extreme version of a traditional migraine elimination diet. Until a month ago, the diet was horribly frustrating. It seemed like both nothing and everything I ate were triggers. I wondered if there were other aspects of foods that I was unaware of that could be triggers. Then a reader mentioned that she feels better when she avoids foods with histamine. This started major research and an even more drastic diet to cut out amines and salicylate.

The initial improvement started to look like a fluke as the migraine attack severity returned to previous levels. A week ago, I switched from ground dark turkey meat to skinless chicken breast as my main protein source and the migraine severity dropped to a level 4. I’m still tweaking the diet and waiting to see a nutritionist. It will be a long process as I test out foods I’ve been avoiding, but I really think histamine and salicylate content in foods and body/beauty products is a major component of my debilitating migraine attacks.

I have so much more to tell you! There’s a detailed post about the diet coming later this week. First I needed to write this overview to remind myself of the massive improvements that 2012 brought. Sure, I still feel worn out and discouraged at times, but every little bit of progress shows me that chronic migraine is necessarily not a life sentence. A year ago, I was convinced I’d never escape that prison.

I was basically the prototype of chronic intractable migraine. (In a bizarre sort of way, that sounds like bragging.) Ten years with no improvement. Countless doctors, naturopaths and all manner of traditional and alternative health care providers have given up on me. I had given up on me. If I can see improvement, so can you. The struggle may be long and arduous, but there is always, always hope. Hang in there.

Chronic Migraine, Diet, Treatment, Triggers

Revamped Migraine Elimination Diet: Avoiding Histamine & Salicylates

“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: