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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.

5 Responses to “Congratulations,” a Dietary Wake-Up Call

  1. Melanie says:

    Kerrie,
    Thanks so much for this follow-up post. I’ve been thinking hard about your earlier post about the restrictive diet. I understand your desperation. When I read about what you were eating, I knew that I probably couldn’t restrict myself that way (I don’t believe I have the willpower) and was somewhat in awe of your discipline in trying to find anything that would give you back something close to a more functional life. But I get what you are saying about the reader “congratulating” you. She did mean well, even if it came across in a strange fashion.

    I find myself in a similar place, but with the use of Topamax. After taking it for several months, and playing with the dosage under my doctor’s supervision, I was getting some results: milder headaches, although no less frequent. Topamax dulled my appetite, and I have lost about one pant size. Not a bad thing in my case, since I needed to lose some weight for other health reasons. But it affected me so strongly in decreased memory, dyslexia, and general brain fog, that I have had to gradually come off it. I teach, and I felt I could not stand in front of my classes while constantly searching for words. I also wondered if I was doing permanent damage to my brain.

    I came to the conclusion that I could not sacrifice my brain function for a mild improvement in migraines, somewhat like what you are saying about sacrificing your overall health for temporary relief of migraine symptoms.

    Today I am back at work after another 4 day migraine with vomiting, and I’m angry and frustrated that yet another drug treatment is crossed off the list as unhelpful.

    It feels like a maze that I can’t find my way out of. I’ve had migraines for over 40 years. I’m tired. I know you are too.

    Thanks for letting me vent. I will pray and send good vibes your way. I’m going to go donate some funds to the migraine research project. That is something, at least, that I can do.

    Please keep writing.

  2. Kate says:

    Kerrie –
    I’m so sorry you’re going through all of this. When I read your post about eating oats and rice, my jaw about dropped to the floor. I was glad you were finding relief, but also angry about the extent to which you and many of us have to go, in desperately fighting the migraine.

    It feels like such insanity, sometimes – the diets, the meds, the days in dark rooms, silence, isolation, immobility, etc… For many, many years, I would try ANYTHING. Head stands, even. Yeah – how much sense did that one make? But eventually I got too discouraged and exhausted to try much else.

    I admire you for continuing to try. I don’t know how you do it. You’re as ill as I am, and you keep trying to get better. I’m glad you’re going to get nutrition again, but it must be kind of hard to give up that bit of success. Makes me want to say that word to you again. (not that I’m the one who wrote it before, but…) CONGRATULATIONS – for all that you do.

  3. Nilofer says:

    I wonder if you are finding benefit from this diet because it is ketogenic? At least somewhat… I am certainly not an expert in this but I know that some severe migraineurs have used a ketogenic diet to address their migraines. Not sure if it is because it reduces free glutamate or because it starves a microorganism that is undetectable or some other reason. Johns Hopkins has been using a ketogenic approach to help epilepsy patients.

  4. Michael Fernandez says:

    I’m sorry as you may have posted about this, I’m a new reader, but have you seen a geneticist at all? My neuro is head of pain management & neuro at Mt Sinai and sent me to one looking for a metabolic disorder.

    If you’re interested DM me on twitter @mff181 and after my october appointment I’ll let you know what they do exactly.

  5. Thank you all for your kind, supportive words. I’ve been beating myself up for going to such extremes, but you’ve reminded me of the power of desperation.

    Melanie, there’s definitely a trade-off/tipping point with treatments, whether diet or medication. I’m sorry Topamax wasn’t successful for you. I totally know what you mean about being tired — it is physically and emotionally exhausting to be sick all the time and to be constantly searching for treatment. And you’re welcome to vent anytime!

    Kate, thanks for the congratulations! Desperation is a horrible thing. Some days I don’t know how I keep trying, except that I get so sick of being sick that I can’t not try to get better. I want to enjoy this short, precious life as much as possible, not spend it on the couch.

    Nilofer, I actually eat very little protein. My diet is mostly carbs, so I don’t think the ketogenic thing is coming into play.

    Michael, I’m very curious about what you find. I haven’t seen a geneticist (not in the budget right now), but the naturopath I’m seeing wants me to do genetic testing to search for a metabolic disorder.

    Kerrie

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