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Food and Migraine Frustrations: I’m All Out of Cope

I’m glad I published Full of Hope About the Future of Migraine Treatment Wednesday because my hope has been stretched thin every day since then. The DAO is still working great, but I keep developing reactions (read: migraines) to foods that were once OK. If I could still take DAO eat the same 10 foods I ate this spring, I have no doubt I’d still be feeling great. But now over half of those are migraine triggers.

I’m definitely doing better than I was pre-DAO, especially on days 3 and 4 of the rotation diet, but I’m still having at least one migraine, usually two or three, every day.  Beyond frustration with having more migraines, I want to know why in the world my body thinks a migraine is the appropriate reaction to most foods I consume — and why something can be OK for months, then becomes a migraine trigger every single time i eat it after that.

I’m not looking suggestions in writing this post, I just need to vent. I’m in the process of scheduling with my dietician, though I expect more speculation and dietary experiments rather than answers. I’m frustrated and exhausted and so sick of not being able to eat normal food. And really not happy to once again be considering Tolerex for some portion of my calories/nutrition because I know I’d feel great if I just didn’t eat.

I’m trying to cope and not doing so very successfully. I apologize for still not getting to blog comments following my time off. I will as soon as I have a little cope to spare.

(“All out of cope” is a phrase I stole from Hart. Isn’t it great?)

27 Responses to Food and Migraine Frustrations: I’m All Out of Cope

  1. stephanie smith says:

    I am so grateful not to feel alone any more with this problem. I have learned SO much from you! I am very excited to find a really helpful source of information from someone who truly understands. Anyone who has not experienced this relentless pain, inside our very own skulls can’t conceive it. It’s not a community anyone EVER wants to be part of, but I feel so comforted now knowing I am not alone. Also knowing that there are many things I haven’t tried yet, gives me hope that some day it will be better. Thank you SO much for being there for all of us, and for spending the time and energy to provide this resource.

  2. Bibi says:

    This summer I found out, that if I eat less fruit I get less migraines. I still eat fruit, but not big quantities in one portion.
    Especially very sour tasting things like berries and cherries cause trouble. Hard to explain, – it feels to me as if certain fruits contain more acid than others and avoiding this helps.

    • Violet says:

      Same experience here. I am reduced to apples.

      • Violet, do you mean that you only eat apples or that apples are the only fruit you eat? Not sure if you’ll see my response to Bibi. Not sure if it helps, between benzoates (which liberate histamine) and histamine, many fruits are on the don’t eat list.

        Take care,
        Kerrie

    • Interesting, Bibi. Berries and cherries have benzoates (as do other fruit), which liberate histamine. I wonder if that could be the connection. If you ever figure it out, please let us know!

      Take care,
      Kerrie

  3. julie says:

    I feel your frustration reading your post. I had two immediate thoughts. One about the little girl who is allergic to water. The other was about the info I read on elimination diets that warned of malnutrition. I had a combination of encouragement and foreboding. The story of the girl allergic to water was inspiring. You can’t get more basic in needs than water and food. I fear I am heading down the same road as you with the food. Beginning elimination diet in a week.
    I just want you to know I care and I understand. It’s ok to be “all out of cope”. Feelings aren’t negotiable but they are navigable. I know you will navigate these feelings. Your strength is that of the finest and strongest spider silk. Invisible and practically indestructible.

    • Julie, I’ve never seen a formal elimination diet that risked malnutrition. I did become malnourished, but I wasn’t on a real elimination diet. I took elimination diets WAY too far and ate chicken, white rice and oatmeal for months. After I returned to nutritious food, it didn’t take long for all my blood work to return to normal. If you follow a planned migraine diet, you should be fine.

      Take care,
      Kerrie

  4. Mindy says:

    Kerrie, I’m so sorry you’re at a breaking point. I read this when you first posted & sympathized. Then today I woke up for my 4th straight day already feeling at my highest moderate pain level & thinking “again?” So now I truly empathize. The good thing is that I know there will be a break–just when & for how long is the question. Here’s hoping for both of us it’s sooner rather than later! (Side note: in no way do I compare my pain to yours…from reading your blog you DEF have it way worse, but I can still sympathize)

  5. I’ve had times when water alone couldn’t be kept
    down during a horrible ( they are all grim, painful through your eyes) migraine. I’ve been at the level of apples only for so much time. I don’t hunger for meat, ever, but I long to feel full. For Chinese food it’s the soy sauce and MSG; nothing good except sorbet ( takes the dry mouth away ).mostly I vary the routine with veggies and fruit, but avoid Orange Juice and Coke-it’s terrible for you, I know, but it’s the only way I can take medicine, vitamins and supplements I need ( it feels like the carbonation pushes the pills down) my dietary restrictions are not new: I have had migraines with aura since the age of 9, which makes it 41 years of active migraine disease.

    • Jill, thanks for your comments. I hope the dietary restrictions have been helpful for you. I know someone who swore by chugging an entire can of Coke at the beginning of a migraine. That and Tylenol were his only treatments pre-Imitrex, but he kept it up with the Coke even after Imitrex. I assume it was the caffeine that helped.

      Take care,
      Kerrie

  6. Hope this comment will be distributed to others on the Daily Headache.

  7. Sonja says:

    Dear Kerrie,
    I occasionally read your blog and I’m usually not in the habit of commenting on anything online, but what you’ve been describing with respect to food triggers sounds so similar to what I have experienced that I just wanted to ask whether you have ever tried going on a ketogenic diet to combat your migraines?

    I was also in a situation where more and more foods seemed to be triggering my migraines, to the point where I was hardly ever without a headache, and there seemed to be nothing left to eat. I was avoiding the typical trigger foods with glutamate and biogenic amines as well as foods I have IgG antibodies to, which includes dairy and eggs. I ended up eating mostly carbohydrates with occasional meat or fish, but at some point it seemed, that no matter what I ate, it would trigger a migraine. I was living on triptans and painkillers.

    Since switching to a ketogenic diet, my migraine frequency is greatly reduced. I tried this out of desperation, in spite of the fact that there isn’t much to be found in the medical literature about ketosis and migraines – only a few anecdotal reports and one small proof of concept study that came out recently. There is however lots of evidence that these diets help epileptic patients (ketones can be used as an energy source by most neurons and lead to reduced neuronal excitability). I wish I had tried this years ago, I now think that blood sugar spikes followed by hypoglycemia were a cause of many of the headaches triggered by meals where I couldn’t figure out what they could possibly contain that would trigger a migraine.

    Doing what some neurologist suggest, i.e. eating frequently to keep blood glucose stable to avoid migraines simply didn’t work, and now strikes me as the worst kind of advice one could give to a migraine sufferer, because if you do this, the body seems to lose the ability to switch to fat metabolism and production of ketones when necessary, for instance overnight or in response to strenuous exercise.

    I still have to avoid the obvious triggers like foods rich in tyramine, histamine or glutamate, but the overall improvement is greater than anything I have seen before, both diet-wise and compared to prophylactic medication, and without any nasty side effects. I did not feel great for the first week, but not that much worse than usual. If the brain is used to running on glucose, withdrawing this fuel source by going into ketosis is bound to trigger headaches, but once I got through the initial phase, I felt better than I had in many years. Since being on this diet, I also seem to be a lot less sensitive to other triggers, such as stress, hormones, odors, bright lights, and changes in barometric pressure. I have less muscle strength than before (lower glycogen stores), but endurance is not a problem, I can go running or cycling without any post-exercise headaches, and my sleep has improved, because I don’t wake up with a migraine in the middle of the night anymore.

    I should probably add that I didn’t really have any weight to loose, and went on this diet only because of the constant migraines. I did end up losing some weight, I went from a BMI of 21 to 20, but this still seems okay to me. This was one of many dietary changes that I have made over the years, and the only one where I saw a clear improvement. Staying in ketosis is a bit of a bother, but doable, you don’t have to live on eggs and bacon☺.

    Breakfast, lunch and dinner are now always a salad or non-starchy vegetable with some animal protein, but most of the calories come from fat (coconut oil, olive oil and ghee), which still seems kind of scary, but doing this is not nearly as bad as constant headaches. I find that I have to keep the portions of meat or fish fairly small, too much protein seems to trigger headaches, maybe because it can stop ketosis due to gluconeogenesis. I actually wish I could avoid meat for ethical reasons, but tofu, seitan and plant protein powders don’t seem to work for me.

    In case you haven’t already tried this and want to look into ketogenic diets, I would check out Stephen Phinney – he researches and promotes long-term low-carb, high-fat, moderate-protein ketogenic diets – and Eric Westman – he treats obese patients with a modified version of the Atkins diet. I used the induction phase in the Atkins book by Westman/Phinney/Volek as a guideline to figure out which vegetables to eat and how much, but added much more fat, to avoid weight loss.

    I’m still hoping that I’ll be able to eat more carbohydrates again at some point, and I’m not sure if long-term nutritional ketosis is as healthy as its proponents claim, but I guess if I have to keep my brain running mostly on ketones rather than glucose to minimize migraines, I will.

    Best wishes, I hope you’ll find a solution that works for you,

    Sonja

    • Sonja, thanks so much for sharing your story. How long did it take to get to ketogenesis? How long have you been on the diet? I’ve read that for kids with epilepsy, they can return to a normal diet after a couple of years without symptoms. I wonder if the same could be true for migraine in adults.

      A ketogenic diet has long been on my list of things to try. I *think* I’m getting some improvement with a probiotic. My hope is to be able to vary my diet a little bit more so I don’t have to go through horrendous migraines getting to ketogenesis and without a risk of developing new triggers to previously OK foods.

      Your story is good encouragement. Best wishes for lasting relief.

      Take care,
      Kerrie

      • Sonja says:

        I’ve only been doing this for 3 months, but the improvement was so sudden, that it was something of an epiphany. It took me about a week to go into ketosis, but I didn’t do this cold turkey. Although I changed lunch and dinner to low-carb immediately, I still ate oatmeal for breakfast (with added coconut oil) for the first 4 days, but I reduced the amount each day. Once I switched breakfast to low-carb as well, I would say it took about 3-4 days. I didn’t experience a severe migraine during that week, and the constant low- to medium-grade migraine went away once I went into ketosis. It really wasn’t that bad, I felt weak and hungry because I wasn’t eating enough calories, but the killer migraine I was expecting didn’t happen. I think there are going to be individual differences in how easily one goes into ketosis though, and full metabolic adaptation to a ketogenic diet can supposedly take weeks or even months.

        I tried increasing carbohydrates after one month on the ketogenic diet, but this resulted in headaches, so I went back into ketosis, and plan to stay there for a while. As for the kids with epilepsy who are able to go off the diet after a few years, I don’t know, this may be a neurodevelopmental thing. Achieving a lasting change in an adult is probably more difficult, but maybe not impossible. I came across a book by a German author who reports curing her migraines through only 3 weeks of a rather extreme low-calorie, low-fat ketogenic diet, followed by some time with increased fat and then switching back and forth between keto and non-keto days. There is also one case report in the medical literature where a woman became free of migraines during a 7-month ketogenic low-calorie diet (done for weight loss) and remained migraine free after going off the diet. The other reports I found are about intermittent ketogenic diets, where only the ketogenic months were migraine-free.

        Best wishes,
        Sonja

  8. Jamie says:

    Hi Kerrie, Sonia, and others,

    I came across your posts while doing a search for ketogenic diet and migraines. I have had migraines since I was a teenager and they became chronic 5 years ago, at age 30. I have seen 4 neurologists (3 of whom are top headache specialists) and tried many meds. At the best medication control the migraines went down in frequency to about 5 per month. Lately, they have been getting worse. I have also had a persistent visual aura for 5 years.

    But, 2 weeks ago I started the ketogenic diet; specifically the 4:1 epilepsy protocol. I have a Ph.D. in neurobiology, so I did my homework and had journal access to evidence that it can work for migraines. I’m also able to easily do the calculation (where dieticians come in handy) A naturopathic doctor is working with me to make sure I’m getting the nutrients that I need and he will check my bloodwork periodically. It took me a week to achieve the therapeutic levels of ketosis, but several days into the diet my migraines stopped. Completely. I have gone 2 weeks without a migraine, which has not happened in 5 years. The aura, which is intermittent still remains but I may need to tweak the diet and be more exacting with food weights, as is done for seizures. Please think about trying it. It IS a pain to maintain, but in 2 weeks it has done what multiple doctors and medications could not.

    Best,
    Jamie

  9. Jamie says:

    Oh and I’ll also comment that getting to ketosis from my previously very carb heavy diet sucked. Cravings and I although it did not give me terrible migraines I got dull headache for 2-3 days. There is something called the “keto flu” that I didn’t believe until I experienced it. But, if you eat less carbs/sugar to begin with it may not be so bad.

  10. Jamie says:

    And, one more comment! I’ll add that when I asked my current headache specialist about the diet, he immediately shut me down and said that there was “no evidence that it works” and that he couldn’t help me with it. I happen to know the intricacies of the brain better than he does…Two dieticians I contacted were too unfamiliar with the epilepsy version (in adults a modified Atkins diet is high fat and used for weight loss but I wanted the stricter epilepsy protocol).

    • Jamie, it’s true that there’s no evidence that it works, but a desperate patient will try many things for which there’s no scientific evidence!

      Take care,
      Kerrie

      • Mindy says:

        I just have to add that I find all this Ketogenic Diet talk extremely fascinating…

        • Mindy, me too! It looks like the kind of diet that’s best attempted with the help of a dietitian. The ratios are pretty exact and supplemental nutrition (vitamins) are recommended. (Having malnourished myself, I’m now very cautious!). Please let us know if you decide to try it.

          Take care,
          Kerrie

  11. Taryn says:

    Hi Sonja
    I would love to hear more about your experience on ketogenic diet for chronic migraine. My email is tsbloom@gmail.com if you can be in touch that would be wonderful.
    Thanks
    Taryn

  12. Kristin says:

    One glorious month migraine-free while maintaining Paleo ketosis. Just wish I’d realized it sooner.

    I’m very excited that tomorrow will be my 1st Paleo anniversary. Having been stalled for 7 months after only 14 initial pounds lost, I did a 5-day fat fast one month ago. I lost and kept off 8 pounds and since have remained at very happy keto macros of 80/15/5 with my daily protein grams between 50 and 60 where before the fat fast I was between 90 and 100 grams daily, which should’ve been appropriate for my BMI.
    Anyway, I just realized a few days ago that I haven’t had a migraine in weeks!! Not even around my lady time, which is pretty much a monthly guarantee that I’ll be popping Imitrex like M&Ms for a good 3 days.

    I’m thinking my protein intake was keeping me from keto because no matter how low I kept my carbs, nothing was changing. Soooo if too much protein means my body is making the glucose and keeping me outta keto, then lowering my protein to between 50 and 60 and keeping my net carbs below 20 seems to be my MIGRAINE MIRACLE!

    I’m keeping my fingers crossed and remaining in Paleo ketosis. Still no dairy, grains, sugars, legumes or veggie oils. I get my fats from avocado oil, Olive oil, ghee, coconut oil and of course, salmon, grass-fed 85/15 beef and crispy chicken thighs while watching the protein grams. Lots of organic salad greens with my homemade primal dressing, fat bread sandwiches (feed the animal has the recipe) the occasional 1/2 sweet potato (wedges wrapped in uncured bacon) and mashed cauliflower with roasted garlic. It’s never boring 🙂

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