There’s no way I was going to waste all the work to eliminate food chemicals from my diet without reintroducing them slowly and methodically. Testing was going great until the day I stopped drinking the elemental formula completely. So now I’m playing around.

“Playing” sounds like fun. It’s actually tedious and frustrating. Here are some of the variables I’m investigating:

• Do I need more DAO than I’ve been taking?
• Would I feel better if I took one Histamine Block before eating a small meal, rather than taking two and eating a larger meal?
• Are the foods I’m eating too difficult to digest?
• Would juicing fruits and vegetables ease digestion and, thus, not trigger migraines?
• Am I sensitive to salicylates (the food chemical I was testing)?
• Am I reacting some other food chemical that I wasn’t on the lookout for?
• Do I need to rotate foods? (If so, how in the world can I do this with only a few sources of protein and mostly vegetables, which won’t meet my caloric needs for a day?)
• Is just one food in the group I reintroduced problematic?
• Does overall sugar content matter?
• Does not drinking water with a meal reduce the possibility of a migraine? What if I drink a lot of water with a meal?

The food details are even more complicated because I no longer have reliable indicators for when a migraine is coming on. Tooth sensitivity can come on part way through a meal, last for two hours, then stop without a migraine ever developing. Fatigue can come on and then abate after an hour. I don’t want to waste a triptan or drug myself up unnecessarily, so I don’t take anything.

So, I’ve had a migraine every day for the last week (I had one when I was writing last Thursday, I just didn’t realize it), but the pain has only reached a level 5 once. When a migraine hits a level 4, it doesn’t stay that high for long. Much of my days are still spent with pain levels at a 2 or 3. Fatigue is generally short-lived and brain fog is not severe. For me, this is Disneyland.

I am not discouraged. I knew reintroducing foods would increase the migraine attacks and that sorting out all the dietary variables would be messy. I still believe DAO and histamine are valuable pieces of my puzzle. Exactly how they fit into the picture is still unclear, but you can be sure I’m going to find out.

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I haven’t written about this “diet” — what I eat isn’t healthful enough to constitute an actual diet so I have to use quotation marks — because it is unhealthful and I do not recommend it to anyone. It is an untenable solution and I worry about my nutrition all the time. Yet, I can’t let go of the life that eating this way has given me.

On this limited “diet,” I wake up each morning and know I can probably do what I have planned, rather than knowing I’ll be lucky to mark two items off my list. It enables me to have engaged and interesting conversations with my husband, make plans with friends actually be able to follow through, write regularly for Migraine.com and The Daily Headache, make meaningful decisions for TheraSpecs, exercise most days, go to yoga classes, attend therapy appointments…. In other words, subsisting on oats and rice is the difference between living a fuller life than I have in more than a decade and spending most of my time on the couch, in the unpredictable throes of a migraine.

I know I need nutrition and I don’t plan to eat this way indefinitely. It has yielded some important clues that I hope will further my treatment — I have an appointment with a dietician experienced in food sensitivities in a couple weeks and my naturopath is going to test me for metabolic disorders. While waiting for those appointments and results, I’m slowly testing high nutrition foods to see how I react. I do so with great caution. It’s hard to willingly return to the migraine cage I’ve lived in for so long.

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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.

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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.

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So I’m in the constant questioning of a chronic migraineur: Can I identify a trigger of my current migraine spell? The stormy weather? Food chemical “withdrawal”? This mild cold that’s dogging me? All of the above? None of the above?

Then come the questions of a woman who has been obsessed with food triggers for the last year. If the current attacks are food chemical withdrawal, will I feel better soon? Is the diet doing anything? Am I on a path toward any relief?

As so often happens, I make a change to diet, sleep, exercise, where I live, etc. and notice an improvement at first. Then the gap closes and I’m back to debilitating migraines. Magnesium and cyproheptadine are the only variables that have brought sustained relief.

I operate as if chronic migraine is a puzzle I can figure out if I just get the right pieces in place. No matter how hard I work, the solution continues to evade me. I refuse to give up, but I have to wondering if I’m wearing myself out on an unsolvable riddle. Beating one’s head against a brick wall can’t be good for a migraineur.

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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:

• Swiss Interest Group Histamine Intolerance (great information although translation from German is a little rough)
• Histamine Intolerance Awareness
• Food Intolerance Network Factsheet: Salicylate
• Salicylate Sensitivity

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.