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Food Triggers & Unrealistic Expectations

Terri of Wind Lost blogged this week about her attempt at trying to find food triggers. She followed the recommendations in Heal Your Headache: The 1-2-3 Program for Taking Charge of Your Pain, by David Buchholz, and in this post describes the outcome.

Some people absolutely swear that this book changed their lives. Not all of us are that lucky. Terri considers this and also talks about the expectation that one can “heal thyself.” She writes:

“[A]s for the ‘elimination diet’ I hope it works for some people. All the rave reviews I read on Amazon say so. But my triggers are clearly non-food related, so while this is a great idea, it doesn’t fix everyone. David Buchholz doesn’t address non-food triggers very well, except for saying that they exist and if so, keep reading. So his book is great for food-issue folks, but it ain’t magic and it didn’t ‘heal my headaches’ even though I was a perfect patient.”

The post, entitled Caffeine & Diet: Heal Thyself! is terrific, so be sure to check it out. And if you’re interested in reading another patient’s take on the topic, Paula Kamen, author of All in My Head, has also blogged about this book and the unrealistic expectations it fosters.

10 Responses to Food Triggers & Unrealistic Expectations

  1. Terri says:

    hey k, thanks for citing me in your blog. that’s awfully generous of you! hope i don’t get hate mail for saying the 1-2-3 method didn’t work for me. 😉

    then again, buccholz doesn’t say how long you need to stay at step 3: drugs! i think most of us are stuck here forever.

  2. Shannon says:

    The last time I saw my headache doctor she recommended David Bucholtz’s book. The main thing I got out of it was it confirmed what I already suspected–the triptans are a setup for rebound headaches/migraines and increasing dependency. So I gave them up cold turkey after 10 years of use.

    My doctor is also a migraineur and in her opinion caffeine is the strongest food trigger. At the beginning of this year she advised me to give up chocolate completely since it was the only caffeine left in my diet. I was already careful about what forms of chocolate I consumed and the quantity. Reluctantly I stayed completely away from chocolate for several months before trying some again in the form of a Mrs. Fields chocolate chip cookie. I felt twinges of pain on the top of my head after polishing off the cookie. I washed the cookie down with a dose of Relafen–the NSAID I take at the first sign of a headache that might escalate into a migraine.

    A few weeks later I visited Mrs. Fields again and this time purchased 5 of the nibbler sized cookies–3 cinnamon sugar and 2 chocolate chip. I had no problem with this mix. Not a twinge of head pain.

    I am somebody who does have multiple food triggers, and unfortunately, they have increased in number over the years. I have so many food triggers that I’m astounded when other migraineurs say that food isn’t a trigger for them. On the other hand, I have found that with some foods the trigger effect can be related to quantity–i.e., I can get away with eating a small amount of something, but not a whole plate of it. Sometimes I can also offset a food trigger by eating it with something that acts in some way to diminish the trigger. For example, I can’t eat just plain rice without it making me jittery, messing with my nervous system and thus setting off a migraine. I can however eat rice if it’s combined with the right protein. Still I have to restrict the quantity of it, and the type–ie., I can eat white rice, but not brown rice.

    I laughed at the Menu’s and Recipes recommended in Dr. Bucholtz’s book. I cannot eat most of the things he suggests. I think it would be easier if I could just evolve to the point of being a breatharian.

  3. ErinM says:

    Meh. Add me to the others that don’t have significant food triggers. I have foods which, consumed in combination, MIGHT trigger a migraine. But nothing significant to be depended on.

  4. I think a lot of these scientists are whizzing into the wind. They don’t know what causes our headaches – I’ve had mine for 10 months non-stop now and have tried almost every drug on the market, most with horrid side effects – and have to keep saying, “Do this, take that, stay away from the other,” in order to NOT look like they don’t know what they’re trying to treat. The truth is, most of the time they don’t know what it is that causes the headaches, and no one treatment will work for everyone. I’m to the point of requesting marinol or methadone for mine. I can’t work, can rarely drive, and have become a semi-home-confined person thanks to a multiple diagnosis with no known cure.

  5. Diana says:

    I had the same experience with Dr. Buccholz’s book. For me, it was worthwhile to at least consider some foods that I hadn’t thought were triggers, but by and large, the restrictions didn’t do much for me.

    I also have big issues with what Dr. Buccholz says about medication overuse headache. Some of his statements on what does and does not cause it are flat out wrong, and he goes against the recommendations of everyone else in the field for no valid reason.

  6. Kate says:

    Hi Kerrie –

    Diets aside, I have a HUGE problem with Buccholtz’ book. It’s Chapter Nine: “When Treatment Fails”. In this chapter he speaks of “hidden agendas” for treatment failure, such as “…when we reap the rewards from being in the sick role. When we’re sick, others give us their attention, concern, affection, sympathy, help, forgiveness, and permission to be excused from work and other responsibilities. As a neurologist friend of mine has noted, we all like having our pillows fluffed.”

    He states that “we all struggle with our identities”, and suggests that the title of “headache patient” gives us at least “SOME identity” and “distinguishes” us. Can you even imagine this??

    He goes on to put forth reasons that headaches are “hard to let go of”, producing patients who “don’t try hard enough”.

    This is an outrage. And he is being touted as a “headache expert”, was given an hour on Larry King Live, and patients everywhere are being given his book to read. And I wonder how many DOCTORS without enough headache training are using his book as a guide??

    Even worse, in the same chapter is a section entitled “The Trap of Disability Status.” He states that no doctor should support long-term disability claims based on headache complaints. “The patient who walks out of a doctor’s office with a signed disability form is grateful and content, in contrast to the one who departs angrily with an unsigned form.”

    He states that he understands that we are suffering, but that we are suffering because we have never had PROPER treatment, such as his “1-2-3 Plan”, (which I can’t say has much in it that I haven’t heard before). He writes: “disability is a trap: it guarantees that you’ll be compaining of headache until you choose to set yourself free.” SET MYSELF FREE???

    Kerrie, is anyone else insulted by this?? When I walked out of my doctor’s office knowing I had to apply for disability, I was crying, not “content” by any stretch. Having to stop working was horrifying, and produced NO rewards and certainly no improvement in my “sense of identity”. Oh – and how about the big windfall of cash-flow that we pillow-fluffers on disability get to live on?? My-oh-my, sometimes I just don’t know what to do with ALL OF THIS MONEY!!! Guess I’ll just have to go out and buy some more fluffy pillows and bon-bons.

    Sounds like blaming the patient to ME, which is precisely what he chastised the medical establishment for doing at the opening of his book.

    I just don’t get why this book is getting so much acclaim. I don’t care HOW fabulous his dietary and rebound ideas are for some people; this is profoundly insulting, degrading, pompous, disrespectful, and bizarrely ignorant. I fear most for new patients who may read his book and, once again, look poorly on THEMSELVES when the Great Doctor’s big Plan doesn’t cure them.

    I can’t believe this load of **** was published. Readers, please beware!

  7. Kerrie says:

    Thanks for all the great comments. Clearly headache diets and the book are controversial.

    I agree with Kate — In a few pages, chapter 9 manages to insult all of us. What he writes about hidden agendas and not wanting to let go probably do happen with some patients. But he writes about it is as if it’s super common.

    This isn’t a generalization, but the food-focused headache specialists I’ve encountered are pretty self-righteous. Food triggers are the only answer. If a strict diet doesn’t work, then the patient has done something wrong or has a “hidden agenda.”

    What Buchholz put forth in chapter 9 is an extreme example of such self-righteousness.

    K

  8. Shannon says:

    Agh! I just read Kate’s July 6th posting. Thanks Kate for pointing out chapter 9. I hadn’t read it. I’d just skipped around the book. Although I found some information in the book helpful, I’d like to burn the book in protest now that I’m aware of the contents of chapter 9. What an arrogant doctor! Chapter 9 is evidence of his ignorance, and lack of empathy and compassion. Unfortunately, there are many doctors out there who share his views. I’m grateful to have the support of doctors who are wiser than Dr. Buchholz.

  9. Kate says:

    I just want to thank Kerrie and Shannon for responding to my comments with support. It upsets me to see the Buccholz book recommended so often, with no mention of how insulting it is. I want people to be aware of this so that they may not be so unprepared and hurt by it.

    Also, in response to Kerrie’s observation of a self-righteous attitude in many advocates of dietary solutions, I have often found the same; I have also found it in other types of “alternative” treatment providers, even if they are very kind and don’t realize the disrespect in what they say. Some of the most fascinating ideas, if they don’t help, seem to boil down to the conclusion that it didn’t work because something is wrong with ME – spiritually or emotionally.

    I’m willing to keep trying new ideas – definitely. But your website, as well as some of the discussion forums, are a HUGE help with keeping them in perspective. Paula Kamen’s All In My Head was a great validation with this as well.

    Thank you! -Kate

    ********
    You’re welcome! I’m embarrassed to have put the book in my recommended reading list.

    The points that you make are so important that I’m going to pull some information out of these comments for a post on the topic.

    Thanks for pointing out the awful chapter.

    K

  10. Elke says:

    Hi Kerrie,

    I’m really amazed at all the utter negativity expressed about the book by Dr. Buchholz. I don’t think it is smart to throw the baby out with the bathwater because he seems to be arrogant and some of the chapters feel insulting.

    I read the book over a year ago and follwed its suggestions. I stopped taking Axert and had horrible withdrawal headaches (and I was within the limit of 10 pills per month!, before then I had rebound headaches and I had always been so careful trying to avoid those, migraines are bad enough), I also stopped drinking green tea and whatever foods are mentioned as triggers, I didn’t eat them anymore. I used to have four or more migraines a month, which often became just one miserable migraine for a whole month. And if it wasn’t a migraine there was some other headache plagueing me. I have had migraines since I was twelve, which gives me nearly 30 years of experience and they had gotten worse over the years. Now I seem to have reversed this trend. I get about one migraine per month, which is much milder than before and responds to Tylenol and Aspirin and the “minor” daily headaches are basically gone. To get to that point I had to add daily excercise and meditation. The diet alone cut the frequency only by half and made the migraines somewhat milder, so it didn’t do the trick alone, but it enabled me to do sports again and meditate. Before I started on the diet, those things would have been impossible, just the thought of sports made my head hurt even worse. One of the reasons the diet might not have made a huge difference like people describe it on Amazon is that I already knew a whole lot of my triggers, so the list of things I had to cut out wasn’t that long. The triggers I had found out before, I had found out by keeping a very elaborate headache diary (it had one page for daily acitivities, one page for foods, one page for the severity of headaches and kind of headaches and one page for other symptoms like nausea, flashing lights etc.) and I think there is a lot to be said for that. The diet is just an easier approach and doesn’t require you to do a lot of sleuthing through endless amounts of data.
    By the way, the book doesn’t claim it is a cure all, that is why there is a chapter on preventive medication in there and the reason why some other things aren’t mentioned is that changing too many things at once might be utterly overwhelming, especially when your head hurts all the time and getting out of bed seems like a gigantic task. You don’t have to love the author and everything he writes, but I think it is definitely worth a try.

    I tried it out of desperation, none of the preventive medications worked for me, I was treating at least once a month with a 6 day course of cortisone and a normal life was as far from my life as Mars is from earth. The combination of diet, excercise (I go for one hour walks, which are also soothing to my mind; or cycle or row indoors), meditate (autogenic training/therapy, a kind of self hypnosis and very similar to bio-feedback but can be done anywhere, anytime by oneself) did the trick for me, but it is the combination of the three. I now can buy a concert ticket and actually go, I read a book and will remember its contents and finish it within a week or two and not after half a year. I’m more available for my family, and I can consistently work on my art, not eight hours a day but maybe two or four. I just feel I’m closer to having my life back. I’m not migraine free, there is nothing to be done about the hormones once a month, but I can live with that, especially as the migraines aren’t as severe anymore. Compared to where I was over a year ago, this is like a new life.

    And yes, the diet is not easy, it involves a lot of cooking, but the time I spend cooking is less than I used to spend rolled up in pain on the couch. Going out for dinner or even a sandwich is very hard, but at least now I can go out, I didn’t use to be able to, because the noise in a restaurant would be intolerable for me. Also, the claim that you cannot eat anything or cook a decent meal is not true, I cook every night and my family, who has to “endure” the same food I do, hasn’t complained once. They enjoy my output of cookies and cakes, that I bake to make up for the lack of chocolate. – And keeping the diet in the face of temptation in the form of a pizza or chocolate isn’t easy either, but for me, nothing is worth the headache, not even the most divine piece of chocolate. For me, unlike for people who don’t suffer from migraines, not having the piece of chocolate is being good to myself.

    I can only encourage people to give the diet a serious try and maybe add other things like sports, meditation, regular sleep pattern, reduction of stress. To not try it, because you didn’t like the tone of the book seems foolish to me, in the end it is about you and making you feel better, not about the author.

    It might also give you a sense of empowerment to be able to do something yourself about your headaches. I have always found that even the thought that I could contribute to making my headaches better was laughed at by the various headache doctors I have seen over time. Only some medication was going to rescue me, never mind that it made me sick in some other way and didn’t help. I had never been recommeded the book by Dr. Buchholz but found it myself by chance.

    It might not work for everybody, see Terry’s experience, but I think many migraine sufferers just like you have already eliminated some dietary triggers, so this is just taking it one step further.

    I wish you all the best!

    P.S.: I’m sorry this post is slightly disorganised, I hope my message still comes across.

    *********
    Thanks for your comments. I’m glad that the diet has reduced your headaches. Eliminating food triggers has proven helpful for me too.

    K

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