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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.

14 Responses to Diet Update: Beyond Frustration; Debilitating Chronic Migraine Looms

  1. Kerrie I feel so badly for u and the food thing. There is no one more diligent in trying this method than u. The results have brought u increase HA +++. I am 65. Chronic HA since 14 migrane onset with periods…muscle tension HA by 20 daily chronic on type or other. U may, after menopause have big relief of migrane and the symptoms so troubling . I don’t mean to be Debbie Downer, I just fear with now malnutrition and a long time trying out trigger foods, it’s time for 6 months at least of back to normal..of course no choc or alcohol but girl I think u should eat. The latest symptoms r not acceptable( dizzy, knees not holding u..). I hope u don’t think it’s wrong of me to write this.. Hugs! Nicky also, at menapause HA were less but for me I got a host of other crap I have written about here, and don’t mean to promise menapause is nirvana…just ??

  2. sarcozona says:

    I wonder if a good meal replacement – the kind with just nutrition and not extra flavoring and sugar and weird stuff might be an option. Like http://en.m.wikipedia.org/wiki/Soylent_(food_substitute) ?

    It might help you figure out which foods are making you ill while staying well in the process. Though if you have a metabolic disorder, I don’t think it would help.

  3. caroline says:

    Hi Kerrie, I’m thinking of you and sending you all best wishes during this horrible period. It is so unfair that you have to go through this. i’ll keep you in my thoughts and hope that you find your answer soon.
    X

  4. macattack says:

    Sending healing thoughts your way. No one knows your situation better than you do, but if I can advise on one thing I would just say that you have got to get some nutrition to help that body run for you. As with all potential triggers, it could be that the ____ is a migraine trigger or it could be that you were on a path to the migraine regardless and now you are associating the last thing you ate, drank, did, etc with being the cause. Basic needs for hydration, nutrition and sleep can not be abandoned though.
    Know that I admire you greatly and wish for this to stop for you!!

  5. Suki says:

    Best to you Kerrie. I learn so much from your posts- you always seem to say just what was on my mind. Wish I could give back in same. Sending thoughts and energy best I can.

  6. Thank you all for your concern and love. It means a lot to me in this rough period.

    Nicky, those are actually migraine symptoms. I’ve had them before, but they’ve let up in the last six months. I am working my way toward a healthful diet, I promise!

    sarcozona, I’ve ordered a product called Tolerex at the advice of the dietician. It’s what’s used in feeding tubes of people who are very sensitive to foods. It’s much like soylent, but was created by food scientists, which, in this case I find reassuring. You’re right that a metabolic disorder could mean that I can’t handle even that — my naturopath is concerned about that very problem, though I still intend to try it and see. Well-rounded nutrition is just too tempting!

    Caroline, thank you!

    macattack, wouldn’t it be nice if triggers were straightforward? Thanks for the support.

    Suki, thank you. Your thoughts and energy are definitely giving back to me.

    Kerrie

  7. Sarah says:

    You are precious, and my heart is breaking for you.

  8. Sue says:

    Sending healing thoughts your way Kerrie. I hope the Tolerex brings some help and relief.

  9. Timothy Bauer says:

    Kerrie:

    Said a prayer for you-

    One day, one hour, one minute, one moment at
    a time-hang in there lady-

    Timothy from Reno

  10. Sue says:

    I am so so sorry that you are going through this rough patch. You must think that way..that it is only temporary. Also something to consider…the weather all across the US has been crazy. Up and down,hot to cold ,storm after storm. It might not be the food at all. I do know that my Hubby has not been this bad in a very long time. Many hugs to you!!

  11. Bibi says:

    Hi Kerrie,
    I am so sorry to hear how you are struggling with this diet. It is just such a pain, that one has to be so careful with foods and also very tricky to figure out. Some days I can eat a particular food, other days I get a migraine, when I eat too much of it. But mostly the diet helps me stay free from constant ear pain and weekly M attacks.
    I cannot remember if you take any vitamin C and B6. (These are recommended since they help making DAO in the body. I once took a vitamin B combo, but this might not be so good, because B12 is not recommended for HIT sufferers). In the morning I take 100 units Q10, which really helps clearing up my brain.
    Hope you soon find out, if the cause for your M is metabolic.
    Big HUGS

  12. Katie Burke says:

    Love you.

  13. amber d. says:

    Oh Kerrie,
    I’m so sorry at how these diet issues have spiraled.
    Some days I feel like this disease has evolved to break each of us individually – of course that isn’t true, there is hope and you are strong and loved. Warmest, best, thoughts to you. XOXO a.

  14. Meredith says:

    I have also been trying to change my diet to help my migraines. I took an ALCAT food sensitivities test. A lot of doctors/people doubt its reliance, but for me a made a really big different. I did have to cut out a few additional foods (mostly tradition migraine triggers like tree nuts and bananas), but having a general blue print made it much easier to figure out the few extra foods to eliminate.

    One thing I will say that doesn’t seem to be in much of the literature that has made a big difference for me is cutting out carbs. I try to eat a diet mostly consisting of protein and vegetables. Rice and sweet potatoes are the only safe carbs I have found. I also find that eating carbs in the morning its more problematic than the afternoon.

    I’ve been on a severely restricted diet for one year now. I still get a migraine a week (down from about 3 weekly plus way worse headaches in between) often because I mess up accidentally. I share your sentiment about wanting to cry. I’m 100% sick of living such a restricted life. I guess all I can share is the few personal experiences and that I know how you feel.

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