Remember that extreme migraine diet I mentioned in January then never spoke of again? Normally, my silence would indicate that it was a passing fad that I gave up on quickly. This time it is because talking about the diet — really even thinking about it — makes me unhappy. The only way I’ve been able to stick to it was to put my head down and plow ahead as blindly as possible, eating because my body needs fuel, but not getting much pleasure from food.
You may have guessed that I haven’t noticed much of a difference in the frequency or severity of migraine attacks. If limiting my food choices had caused the migraine attacks to decrease in severity or frequency, I’d gladly eat sawdust for the rest of my life. Instead, the migraines are still so frequent that I’m afraid to add food back in because I won’t be able to tell if a food triggered the migraine or if it was bound to happen anyway.
The Diet
I don’t do much halfheartedly and this diet is no exception. I’ve cut out all food on the tannins and tyramine lists — both those that are high in the substances and those that are on the OK-in-moderation list. The older a food is, the higher the tyramine content, so I try to cook food the day I buy it, then freeze it. Grocery shopping takes a lot of energy, so this is more often the goal than the reality.
I’ve also cut out everything in Heal Your Headache, the unofficial migraine diet handbook, including monosodium glutamate, aspartame, caffeine, fresh yeast, beta-phenylethylamine (in chocolate), nitrates/nitrites and sulfites. Again, I’m avoiding anything that has been anecdotally implicated in migraine and anything the author says may be a problem for some people.
To make my diet even less interesting, I ditched dairy in April and gluten in early May.
The Results
I began the diet the second week of January, but it was a couple weeks before I eliminated all the potential triggers. Other than constant hunger and an increased vegetable intake, I didn’t notice any changes after starting the diet. However, I confounded variables — February 7 is the magic day I increased my magnesium dose to 700 mg, which kicked off the biggest decrease in frequency and severity of my migraines that I’ve ever had. I continued to increase the magnesium over the next few months and am now at 1,167 mg a day. I attributed all the improvement to magnesium, but food restrictions may have also played a role.
Reintroducing Foods
Here’s the hard part. Actually, the diet had been really hard — here’s the tricky part: The migraines are still so frequent that I’m afraid to add food back in because I won’t be able to tell if a food triggered the migraine or if it was bound to happen anyway. Sources vary on how long it can take for a food to trigger a migraine attack, but many say it can take up to three days. Three days? I usually have three migraine attacks in three days, how in the world can I connect an attack with a food?
So far I’ve tested peaches (tannins) and bread (yeast, gluten and (in the malted barley flour added to some wheat flour) tannins). Twice after eating peaches there’s been no discernible difference, once, six hours after eating the peach, I had my first level 9 migraine since December. Within two hours of eating bread last Sunday, I had my first level 8 migraine since late March and was out of whack the whole week, during which I had a migraine every day. However, I already had a migraine coming on when I ate the bread (yes, I know that was a mistake).
Conclusions
Ha! Like I’m anywhere close to a conclusion. I was much more cynical about the diet when I drafted this post, which was before I began reintroducing foods. After last week’s migraine attacks and with traveling to a wedding this weekend, I’m afraid to deviate from the diet at all. Then there’s a basket of triggers on the horizon as Phoenix is on the verge of the summer monsoon season, which means wind, clouds and thunderstorms. I’m having trouble imagining testing any more foods until September, but I can’t imagine I’ll wait that long.
In addition to the fear of food I’ve developed by being on this diet, I’m concerned that the diet is not nutritionally adequate, that worrying about the diet itself is increasing my overall stress, and that my reluctance to eat bland food is disrupting my eating schedule and increasing my vulnerability to migraine attacks. In other words, I wonder if the mere fact of being on the diet is causing more problems than it is solving. I’m stuck in fear, fear of migraine attacks and fear of food. This can’t be healthy.
Hello – not sure if dairy has been covered, but once I gave up dairy, became vegan actually, my food-triggered migraines all but disappeared. I am now also almost entirely gluten free and trying to be soy free, and feel much better doing this as well. My only migraines now are related to neck pain.
I have been taking Topomax for eight years and really want to wean myself off of it, I think I’m almost brave enough to do that. Has anyone successfully stopped taking Topomax after long term use?
Hi Kerri,
I wanted to give you an exciting update: after seeing in writing how frustrating the migraine diet has been, I got more and more fed up until I quit it cold turkey. I just plain started eating regular food again. I figured that if I had a noticeably worse period of headaches/migraines, I could just resume the diet. Well, it’s been two weeks, and I’ve had exactly the same number of headaches as usual! My anxiety over eating is almost gone, and food is so delicious! Had to share. I hope you are finding something that is working for you too.
Stumbled on this blog, am pleased that I did. I have much empathy for you all.
What I have come to understand is that in the best case, preventative meds are successful only 50% of the time.
I have read that for chronic migraine, Botox can be 70% effective. I have no Exp with it. My migraines have been more episodic.
I have had 6-12 migraines a month for a while now and while I know the main reason is genetic I have yet to find a consistent regimen to bring them under control.
Diet is a tough one as there are so many variables that are difficult to eliminate, and it is difficult to attribute something you ate with a HA if the HA broke out several days after the item was eaten.
I use http://www.nyheadache.com/blog/ a lot as a resource
Best wishes as you continue to deal with a condition only understood by people who experience it first hand
Kerrie, you said you also struggled with bland food. Here is a recipe I found that I love for a vegan quiche: http://bittersweetblog.wordpress.com/2010/05/24/real-vegans-eat-quiche/
If you leave out the peas and the nutritional yeast, it’s totally elimination diet approved. I use the following crust recipe instead of the one attached: http://vegetarian.about.com/od/piecrustrecipes/r/basicpiecrust.htm
For the crust I use half whole-wheat pastry flour and half all-purpose flour. I haven’t read enough of your blog but saw one comment about you being GF – if that is the case this quiche would still taste awesome with a GF crust. I’m vegan (in addition to the trigger diet, I know, I’m crazy) and every omnivore I’ve ever served this to has loved it. I like to use artichoke hearts and spinach for the filling instead of the veggies listed.
Hope you enjoy, and good luck!
P.S. Sorry for writing a book!
Kerrie, I just found your blog because I was googling variations of the phrase “migraine food triggers timeline” — trying to figure out how long after eating a food it can still trigger a migraine.
Firstly, I’d like to say I found your post “An Open Letter to People Without Migraines” and was very moved. You captured the experience of migraines so well. Most of the people currently in my life are very understanding – most especially my boyfriend of 4 years, who keeps me sane. But this was not always the case, and is still not true of my work environment.
Secondly, I am doing EXACTLY what you are doing with elimination diets. I started the “Heal Your Headache” diet in January 2011 out of sheer desperation. At the time I was experiencing 20+ migraines a month, with “headaches” (or mild migraines?) on the other days of the month. This had been going on for almost a year. So I started the diet. Like you, I also began a new treatment in February of that year which complicated my results, namely botox injections.
Now, a year and a half later, I am down to roughly 15 days of migraine a month. The majority of them are much less severe than formerly, so I feel like I have somewhat of a life again, at least much of the time. I have started working part time, just 3 days a week, which helps me feel like I have more “well days” to myself, and decreases the chance of missing work (I’ve lost a job due to too much sickness before). I’ve been able to start exercising, which I do 3 to 4 times a week. I also discovered that I have severe TMJ, and in fact now believe that many of my headaches and migraines are triggered by the TMJ tension. Unfortunately I can’t get real treatment for this disorder as it is not covered by my insurance.
But, I am still on the diet, and have only successfully introduced ONE food. ONE, in a year and a half. I have had horrible issues with food-induced anxiety, and as anxiety is one of my clearest migraine triggers, this is a problem. Besides the anxiety, I also struggle with two issues when I think about introducing foods: 1. I still get migraines frequently enough that it’s hard to know if it was a food or another trigger. 2. I don’t live in a vacuum where I can just indefinitely risk giving myself migraines. I have to go to work and do housework and try to have a tiny bit of a social life so I don’t go crazy. Plus, who wants to put their hand in the flame?
I guess I’m sharing all this to say that I share your pain. I’ve been struggling to get out of the diet, and every time I feel like I’ve gotten somewhere, I get a bad migraine that makes me doubt everything all over again. I refuse to believe that every food on that list triggers a migraine for me, that’s absurd. But how to find the time to experiment? How to analyze the results? Plus, there is much debate over how long a food trigger can cause a migraine. The Heal Your Headache book says up to 2 days, but all three neurologists I’ve had in the past 7 years insist it’s only 2 to 4 hours. A few months ago I decided I would believe my neurologists instead of the book, and messed around with tomatoes, vinegar, and lemon — but as soon as I thought I had successfully proven that they aren’t triggers, I ate the same foods again and got a series of bad migraines, and now I don’t know what to think.
I realize all this must sound really discouraging. But I, like you, continue to be hopeful that eventually I will find a way to ease my migraines further. In the meantime, I want to give you the same advice I am trying to follow myself: screw the diet! If you haven’t seen significant improvement, it probably didn’t do anything. And if you start eating normal foods again and find that you are clearly getting worse, you can always go back.
I tell myself this every day. I hope to soon have the courage to listen.
I have tried to eliminate all kinds of foods with limited success. Like you Kerrie if you have to wait 3-4 days to know if a particular food is the offending food how can you possibly know when there are too many variables unless you eat only one food at a time (per day). It just seems an impossible situation. I have suffered from migraines for over 30 years and for the past 3-4 years they have become almost daily at times.
For the last 2.5 years I have been on Topamax and amitripilan and now nortripilan (pretty much the highest dose of the Topamax that is safe, but it has caused so many really negative side effects, the worst of which is unreversable hearing loss). I would love to get off these horrible meds.
And so I am hoping that a gluten free diet that I just heard about yesterday will be helpful because none of the other diets have been. But I know you have tried that Kerrie and it didn’t work for you so my hope is guarded.
Uping the magnesuim for me did not seem to help either, in fact it seemed to have triggered a horrible week of migraines. But I don’t know if that was due to the magnesuim or something else, but the migraines stopped when I stopped the magnesuim and started back up again when I started it again. Has anyone ever heard of this?
Thanks for the comments, the kindness and the suggestions. The diet is definitely a short-term thing, I just need to get the courage to add food back in again. I’m almost ready….
Kerrie
Kerrie I am going through much the same process since Feb and I have to admit in the last week I broke down and started eating things I’d so diligently taken out of my diet. But, now when slowly reintroducing things I try them again and again and am trying to put all that data together. I don’t think we should be afraid of the food. Likely if your (and my) migraines haven’t shown much improvement it’s only possibly a few of them items that really bother you. If something seems to give you a bad reaction (for me it has been raisins) I’d say back off, and gently try the other things. The reason to take out is to try again, so you shouldn’t be afraid of trying. And yes, you will get migraines anyway (as will I) but the key is to try several times (space the food out don’t try it day after day) and see if overall it makes things worse for you. Good luck my lady.
Hang in there Kerrie! I’m glad the magnesium has been helpful.
Hi Kerrie, I just recently came across your blog and I’m really impressed. Such thoughtful work.
I’ve been on a migraine-specific diet for for over 10 years now. It has changed my life. Not only am I mostly migraine-free (and I had chronic migraine for 7 years), but I completely fell in love with food. Seriously, I quit my job and went to culinary school.
So, as a self-proclaimed “expert” 😉 here’s my advice:
1. not everyone has food-triggered migraines and not all migraines are triggered by food
2. changing your diet is hard, really hard–that’s how the weight-loss industry makes so much $$$.
3. A migraine-free diet can be done and can be totally awesome, so hang in there
4. Don’t cook-and-freeze, freeze-and-cook. Tyramine content is higher in foods after cooking and continues to build as the food ages. (Our house rule is No Leftovers, Ever.) Take fish, for example. I will buy it, portion it and freeze it. When I want fish for dinner, I throw it into a bowl of water in the fridge to defrost. If it’s not very thick, it can take less than 1 hour.
Good luck and I’m looking forward to reading more of your blog!
Oh, Kerrie, I really wish I could spend some time there and cook for you again! You put so much pressure on yourself, but truly, you are moving mountains. ((hugs))
Long time quiet reader, just wanted to let you know that I hope things work out well with your diet and I truly appreciate every word you write on this blog. Thank you!