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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.