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An Almost Normal Life Thanks to an Extremely Unhealthful “Diet”

In April, my migraine frequency and severity finally decreased enough that I began to feel like I had a normal life again for the first time in more than a decade. The pieces have been falling into place for a while: the move to Phoenix, wearing TheraSpecs, starting a high dose of magnesium, taking cyproheptadine, attempting a low-histamine and low-salicylate diet, starting Ritalin. I’ve been feeling better than at my worst for a while now, but it wasn’t until April that I began to feel like I could have a consistently almost normal life. The change? I took my diet down to nothing but gluten-free oats, chicken breast cooked in safflower oil, and unenriched white rice. I felt even better after cutting out the chicken and safflower oil a few weeks ago.

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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Trusting Myself With the Failsafe Diet

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.

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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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Progress is Not Linear: Arrrgggh!

I fall for it every time. One good week and I assume every week thereafter will be exactly the same: low pain, little fatigue, high energy. Two weeks ago I went to four yoga classes, cleaned, ran errands, and wrote like crazy. The next week was only two yoga classes, a little writing, and one massively productive day around the house. This week? Nada. Well, I made it to yoga Monday, but have otherwise done very little. My mind, in its unhelpful negative self-talk mode, says I’m being lazy. My body, with its bone-deep fatigue, nausea, and aching head, says I need to rest.

Not only do I assume each week will be the same as (or better than) previous weeks, but if it isn’t, my default belief is that I’m doing something wrong. I’m not sleeping at the right times or eating the right food or doing the right amount of exercise. With the amount of emotional energy I spend trying to do everything right or following up on all the “shoulds,” you’d be hard-pressed to know that I’m rather a free spirit. Attempting to keep migraine at bay has turned me into a rule follower. That there’s an infinite number of rules, none of which apply all the time or to everyone with migraine, makes me exert even more effort toward perfection.

I cannot think that the diet isn’t working wonders. I won’t let myself believe that I’m not making continual progress. Which is totally absurd. I have had chronic daily headache for 25 years and debilitating chronic migraine for more than a decade. Assuming that improvement will be linear is illogical. There will be ups and downs, steps forward and steps back. I know all this. Now how do I believe it?

Time to back off, breathe deeply, and just be. Be without scrutinizing, judging, or attempting to change. These are the big lessons in life that I embrace in theory. Applying them is the challenge.

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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!