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I’m Not Giving Up

Thank you for the outpouring of support after my diet update. The comments and my email and Facebook have been overflowing with kindness. Assuming that the concerns of those who have contacted me represent those of many who haven’t spoken up, I want to tell you all that I’m not suicidal and am nowhere close to giving up a search for treatment.

The thought of returning to debilitating migraines again is scary and sorrow-filled. I don’t wanna go back! and I’m kicking and screaming about it, but it’s the only choice right now. Despite a generally positive outlook, sometimes I need to talk about how much it sucks to have chronic migraine. Getting my life back a little bit the last few months has been wonderful. Letting it go again is the last thing I want to do, even if it is the right decision. Not telling you how painful it is would contradict my desire to write honestly about how harrowing chronic illness can be.

Analogies leap through my mind as I try to put this experience into words. The best metaphor I’ve come up with is that of a wild animal in captivity. In my months of malnutrition, I haven’t been roaming my natural habitat freely, but I’ve been in a spacious enclosure that’s built to mimic nature. It’s exposed to the elements and the sunlight is plentiful. I haven’t been on the loose, but I’ve been pretty well off. Expanding my diet means being confined to a small cage enclosed with chain-link fencing. The floor is concrete and there’s no natural light.

More than anything, I want to be free, but the well-designed artificial habitat was exponentially better than a tiny cage. But I know what the sunshine feels like on my face and how the wind feels in my hair. I know firsthand it’s possible to get relief from chronic migraine. There’s no way I’m giving up now.

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Diet Update: Beyond Frustration; Debilitating Chronic Migraine Looms

After my eagerness to meet with a dietician, you might have expected an update on how the appointment. I intended to write one. It was to be about the foods she recommends people with headache disorders avoid (histamine, tyramine and benzoates) and her interesting schedule for reintroducing foods. I was so excited to tell you all about it… until I tested my first food and the frustration returned threefold. Since then, I haven’t been able to talk — or even think — about my diet without crying.

Frustration is no longer even close to an adequate representation of my emotions. I can’t sort out if a food is a trigger or not, if my symptoms are connected to a particular food or to eating in general. I can’t tell if I would have gotten a migraine if I hadn’t eaten a certain food or not. I can’t identify how much of a role other triggers are playing in all of this. It’s like I’m constantly banging my head against the wall.

What I do know is that I always feel worse on days I test foods. That eating ANYTHING, even my “safe” foods of chicken breasts, white rice, and oats usually makes me feel worse. That the issue doesn’t seem to be certain foods, but food itself. My naturopath’s hypothesis that I have a inherited metabolic disorder is sounding more and more plausible. I won’t if that’s the case until I get the results of genetic tests. (Check out WebMD overview of inherited metabolic disorders for an excellent short introduction to the topic.)

I also know that I feel trapped. Trapped between getting good nutrition and feeling horrible all the time. Testing foods has already increased the frequency of my migraine attacks as well as the severity of all my symptoms. My head pain is back to a level 5 or even 6 almost daily. Violent bursts of nausea shock me out of sleep at night. My equilibrium is distorted enough that I have trouble standing up and walking straight. I’m weak and shaky. My knees occasionally collapse when I walk. The effects are mitigated somewhat by only testing foods every other day, but the severity of the symptom is steadily increasing. I wonder how much longer it will be before the drenching night sweats and nightmares, which accompany my severe nighttime migraine attacks, return.

I fear the enormity of the pain and discomfort that are creeping up, preparing to overtake me. Malnutrition appears to be the only way I can keep them at manageable levels, but that’s taking too great of a toll on the rest of my body. I don’t want to give my life back over to chronic migraine, but I can’t continue starving my body of nutrition.

Debilitating chronic migraine’s return appears imminent. It’s breaking my heart. These last few days, it feels like it’s breaking my spirit, as well.

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Blood Work Confirms the Stupidity of Months of Malnutrition

Eight vials of blood, one fainting spell, and three pages of lab results later, and I’m seeing just how much harm my months of malnutrition have caused. Year after year, my blood work is unfailing perfect other than showing slightly elevated cholesterol. I didn’t really think my “diet” would throw things too far out of whack. Boy, was I mistaken.

After five months of living on chicken, white rice, and gluten-free oats, and four months of compromised nutrition before that, my liver enzymes and thyroid hormones are elevated, my blood sugar is low, my folic acid is deficient, my cholesterol is through the roof, and I have a host of other alarmingly elevated or depleted levels. None of the damage is permanent and most of it can be reversed through diet, but the results are alarming nonetheless.

I knew I was taking a risk, but I didn’t expect to see evidence of it so quickly. I should be grateful that my body recognized it was starving and is working to protect itself, but mostly I’m angry at myself for thinking that malnutrition was a wise choice even though it reduced the frequency and severity of my migraines.

While going back to a well-rounded diet would be the quickest route to getting my body back on track nutritionally, I’m waiting until I get guidance from the dietician (tomorrow!) to figure out how to reintroduce foods in a way that tests whether certain food chemicals are triggers. Until then, I’m eating three servings of nutrient-dense foods each day. My brain fog is much better and my fatigue has changed from a body-filled-with-sandbags sensation to more of an achy feeling. The migraines haven’t drastically increased in severity or frequency so far.

Most notably, I’m not longer thinking of every food as a potential migraine trigger, but as an unknown. I’ve also recognized that my migraine symptoms vary throughout the day whether or not I eat a trigger food, so I’m not scrutinizing every symptom and connecting it to foods unless the reaction is obvious. These may seem like imperceptible shifts, but they allow me to feel freer and less afraid of food.

It’s astonishing to think I went from not believing food triggered my migraines to being so suspicious of food that I starved myself of nutrition to feel better. As if I needed more proof that the desperation of intractable chronic migraine messes with the mind.

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“Congratulations,” a Dietary Wake-Up Call

“Congratulations.” Of all the responses I anticipated before publishing An Almost Normal Life Thanks to an Extremely Unhealthful “Diet,” being applauded never occurred to me. When that congratulatory email arrived in my inbox, I was floored. Having had a prior email correspondence with the sender, I knew they were coming from a place of desperation. To them, any sort of improvement, even at the cost of malnutrition, was a tremendous gain. To me, it was reminiscent of people who made jealous remarks about my weight loss when I was gaunt from such severe nausea that I could barely eat. In both cases, the outcome—whether fewer migraines or (unwanted, unnecessary) weight loss—the price is too high.

Serendipitously, I saw my therapist/naturopath the afternoon I received that congratulatory message. She listened as I expressed my dismay that my malnutrition could be a reason to celebrate. She let me rant about how frustrating it is to track down food triggers when Every. Single. Thing. I eat seems to be a trigger. She handed me tissues when I cried about how much I miss food, baking and cooking, and sharing meals with my loved ones. She recommended a bunch of lab tests to check the nutrient levels in my blood. She got the ball rolling on metabolic testing. She explained the hormonal impact of starving my body.

Starving. That was the first time anyone had spoken that word aloud. I’m getting enough calories, so I’m not technically starving, but I’m getting about as much nutrition as I would drinking soda all day. I am starving myself nutritionally so I can pretend to live an almost normal life. The body needs high-quality fuel to run efficiently, and I’ve been running on fumes for months. It’s no wonder I’m in a constant brain fog and my limbs are so heavy it feels like my bones have been replaced with sandbags.

“Congratulations” was intended as a show of support and, in a roundabout way, that’s exactly what it was. It was a wake-up call—no, more like a slap in the face. Starving myself of nutrition relieves the migraine symptoms temporarily, it does not eliminate them or their cause, and it has potential for long-term harm. These months of operating at 50% much of the time have been amazing, but I will no longer trade my overall health for temporary relief of migraine symptoms.

Please cross your fingers, send good vibes, pray, or whatever it is you do that I’ve gathered enough information from this absurd “diet” that my dietician, naturopath, and doctors can investigate some previously unexamined issues, like food chemical intolerances, enzyme deficiencies, and mast cell and metabolic disorders. My greatest hope is that I will not only find some answers for myself, but that my discoveries will help others with headache disorders find the missing pieces of their treatment puzzles.

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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.