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Learning the Value of Nutrition (and Increasing My Head Pain in the Process)

Though last month my head felt better than in decades, my diet’s lack of nutrition nagged at me. I was afraid that living on chicken, rice, rutabaga, and chayote squash would ultimately harm my health, thus defeating the purpose. Trying to find some balance, I started adding foods back in.

The Failsafe diet is already tremendously restrictive and I had restricted my intake even further to avoid:

  • Sulfurous vegetables, like cabbage, Brussels sprouts, and anything in the allium family. These may be a problem for people who are ultra-sensitive to sulfites, a known migraine trigger for some.
  • Nuts and legumes because I’ve been pretty sure in the past they were triggers.
  • Beef, lamb, dairy, and eggs, all of which I had positive antibodies for in a 2005 food allergy test (ELISA). (Tangent: Science-Based Medicine has a great review of the validity of food allergy tests.)
  • Gluten, the food component currently in vogue as the root of all evil.

So far I’ve added cabbage, Brussels sprouts, lentils, lima beans, raw cashews, and beef back in, plus I started using enriched rice. What an amazing amount of diversity this seems to provide! Unfortunately, I feel like I’ve been in a downward spiral the last couple weeks, with increasing migraine frequency and severity, more severe daily headaches, and significantly more fatigue.

The slide has been gradual, without any obvious migraine attacks or increased head pain following certain foods (except for when I tested milk and had the worst migraine I’ve had in six months), so I’m having trouble pinpointing the source. Apparently, some people on the Failsafe diet have trouble with folate, which is added to enriched rice. I eat rice throughout the day every day, so that could explain why I can’t determine the cause of my worsening symptoms. I’m going to switch back to regular white rice this week in an attempt to recapture some of the glory days.

Teasing out the minute dietary changes that may or may not have an impact on how I feel day to day is frustrating and majorly discouraging. I feel like I have to choose between adequate nutrition and having head pain and fatigue that significantly limit my ability to function. I know shorting my nutrition isn’t a wise strategy, but those days of minimal head pain were as glorious as a sunny day in Seattle. I’ll do almost anything to get them back.

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Breaking the Fast: A New Headache Pattern

Breakfast may be the most important meal of the day, but I’ve come to dread breaking the fast. No matter what time I eat my first meal of the day, anywhere from 5 a.m. to 1 p.m., it kicks off a downward spiral.

For the last two weeks, I have little head pain and a lot of energy before breakfast, then I eat and slowly fade over a few hours: my head pain increases, my mind gets muddled, I get so sleepy. The changes are barely noticeable at first, but this migraine or headache (not sure which it is) makes it difficult to push through the day. Eventually I succumb to a nap for a couple hours in the early afternoon. I awake refreshed, with only minor head pain (level 2 or sometimes 3) and am able to think, stay awake, and be productive for the rest of the day.

Breaking an overnight fast seems to be the trigger. Whether I have chicken and rice, rutabaga, or cabbage at breakfast*, the slow onset of headache, brain fog, and fatigue is inevitable. Eating these same foods after the afternoon nap doesn’t bring on a headache or migraine.

Medication seemed a plausible factor, especially because antidepressants are thought to exacerbate Failsafe food sensitivities and Cymbalta is the one drug I only take in the morning. I’ve tried taking it and waiting a couple hours before eating, once even stretching the gap to four hours with a yoga class in between. On those days, I don’t feel bad (just hungry) until after I eat, then I feel worse quickly instead of having a slow fade. The nap doesn’t have the same reviving effect on those days, though.

The new pattern is actually nice. Instead of reading at the end of the day, like many people do before bed, I do it after breakfast because I’m too fatigued to do anything else. I’m energized in the late afternoon and evening, so that’s when I go to yoga, write, and do chores. (Bonus: I get a fantastic energy boost following evening yoga and the pain drops to a level 1 until I eat again.)

Although having some sort of schedule for the first time in forever is fantastic, eliminating these crashes would be even better. Does anyone else experience a similar pattern? Please let me know if you have any clues as to what might be going on — and how to deal with it!

*Wondering why I choose such odd breakfast foods? Read about the Failsafe diet I’m trying for migraine and chronic daily headache, starting with the last post first. I really think it’s working!

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Dietary Ups & Downs

I promised myself my next post would be about something other than the diet. But diet is all I think about right now. It is exhausting. You’d think whittling down my food selection would be a reprieve, except that I’m either in a migraine, recovering from a migraine, or planning the next food I’m going to try that will likely start the cycle over again.

It took six days to recover from cheating on the diet, then I triggered another migraine Thursday night with iceberg lettuce. When I recovered Friday, I cooked up some chicken and rice. To add flavor, I poached the chicken, then boiled the poaching liquid for 30 minutes to reduce it and added the liquid to the mix. Apparently, that was long enough to develop sufficient amines to trigger a migraine.

If I read this on another person’s blog, I’d probably think they were being paranoid and attributing too much to foods as migraine triggers. That was my attitude toward food triggers until eight weeks ago. Here’s the thing: I know my body and I know what my migraines and headaches feel like — I know these things better than I know anything else in the world. On my “baseline” days, which are migraine-free and the headache is of low to moderate pain, my head feels different — better — than it has in a decade.  I still have a headache all the time, but the pain is higher on my skull and it has a different quality than usual, though I haven’t found the words to describe it. I’m also very aware of how my body responds to triggers. Now that my diet is so simple and the headache pain has changed, I can tell when a migraine is triggered by food. I’m more than willing to stick to chicken and rice if it means I can stay at my baseline.

For a couple more days, at least. I see a dietician Thursday and hope she can provide me with good direction and advice. I know what I’m eating is not nutritious and not a long-term solution. But I hope there’s a way to get adequate nutrition and stick with the diet long enough to sort out what my food triggers are.

Because much of the RPAH/Failsafe diet information is anecdotal, I don’t know how much stock to put in this, but there are a couple factors that make me think I just need to keep at it. Some people report being on the diet six months to a year before they can test foods without exacerbating their symptoms. No one uses this word, but I think of it as a detox — it takes a certain amount of time to reduce the buildup of food chemicals in the body enough to introduce them again without causing a flareup. Also, some people, especially those with chronic fatigue symptoms or chronic pain according to the Failsafe WordPress blog, are “super-responders” and have to eliminate all vegetables. Though migraine and headaches are my primary symptom, fatigue has actually been more limiting in the last year.

From your comments and emails, I know many of you find this useful. I hope I’m not boring the rest of you to tears. Maybe my next post will be about something other than diet. I’d certainly appreciate thinking about something else.

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Cheating on My Diet and Suffering the Consequences

There’s only so much chicken and rice a person can eat. The RPAH/Failsafe diet I’ve been writing about? I totally blew it on Thursday… and again on Friday. And I’m out of triptans, so I wasn’t able to abort the resulting migraine. The resulting migraine that has lasted four days so far.

The great news is that I’m almost positive the migraine came from cheating on the diet, indicating that I’m on the right path with this whole diet thing. Determining if a food chemical is a culprit can be difficult because they accumulate in the system and reactions are sometimes delayed up to 48 hours. (This is why RPAH has a detailed food challenge guide, which I’m going to start as soon as re-establish my baseline pain levels.)

Thursday night I felt better enough to bake a batch of breakfast cookies* for Hart. They are full of delicious ingredients that have moderate or high amounts amines and/or salicylates, including peanut butter, peanuts, applesauce, pumpkin, spices and chocolate. A tiny taste turned into bites turned into spoonfuls. Then, since I’d already broken the diet, I licked the spoon after I made chocolate sauce for Hart. I took two Midrin at bedtime, which may have held the migraine off some. But it eventually came early the next afternoon.

“Chicago happened slowly, like a migraine,” a line from Neil Gaiman’s American Gods, was running through my head Friday as I watched the migraine creep up. First the fatigue, then the mental fogginess, then the nausea, then the pain ratcheted up. This was possibly the first time the slow spread of a migraine has been apparent to me. It used to be that one migraine ran into the next and I couldn’t distinguish any of the symptoms. Noticing the symptoms sneaking in is excellent if you have a triptan on hand and can abort it. Instead, I have two triptan prescriptions sitting on my coffee table.

You’d think Thursday’s munching and Friday’s migraine would be enough for me to get back on the diet. But. I’d already blown the diet and I was meeting friends for dinner at my favorite restaurant. Since starting migraine diet craziness a year ago, I’ve eaten at restaurants maybe a dozen times and usually just eggs at brunch. This is my favorite restaurant and they had chicken and dumplings on the menu. And fried deviled eggs. I couldn’t resist. With Midrin and Zofran on board, I went for it.

As of Saturday morning, I’m back to a very limited version of the RPAH/Failsafe diet: chicken, rice, chayote squash, rutabaga, iceberg lettuce, and a tiny bit of sugar. I’ll keep on that for a couple days until the migraines let up again, then I’ll do a dairy challenge, followed by trying to get up to the full diet (minus beans, nuts and sulfurous veg). Reviewing the food challenge chart, I realized I’ll likely be starting and stopping challenges through the summer. This is a long time to eat a boring diet, but, as I’ve mentioned 37 times by now, I think I’m onto something. Not having a migraine every freakin’ day is so worth the frustration. I just had to push the boundaries a bit to prove that to myself.

*Whenever I mention breakfast cookies, someone asks for the recipe. Here you go.

Pumpkin & Peanut Butter Breakfast Cookies

Ingredients

  • 1 can pumpkin (15 oz)
  • 2/3 cup peanut butter
  • 1 1/3 cups applesauce
  • 1/2 cup whey powder
  • 4 teaspoons vanilla extract
  • 1 1/2 teaspoons cinnamon
  • 1/2 teaspoon ginger
  • 1/8 teaspoon nutmeg
  • 1/8 teaspoon cloves
  • 3 cups oatmeal
  • 1/2 cup chopped peanuts
  • 1/2 cup chocolate or carob chips, optional

Directions

In a large bowl, mix pumpkin, peanut butter and applesauce until completely combined. Then add in the vanilla extract, protein powder, cinnamon, ginger, nutmeg and cloves. Mix until completely combined. Add in the oatmeal, nuts and chocolate chips and mix to combine.

Let dough rest for 10 minutes. Heat oven to 350ºF.

Drop cookie dough by heaping tablespoonfuls onto a parchment paper-lined cookie sheet and flatten cookies to about a 1/3″ thick.

Bake cookies approximately 30 minutes, or until golden brown and done. Remove from oven and let rest on cookie sheet for 5 minutes, then move to cooling rack.

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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.