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Ketogenic Diet for Migraine: Is it Working?

ketogenic-diet-for-migraineBut is the diet helping??? I inadvertently edited out the answer to the question many of you were wondering when I wrote about the ketogenic diet for migraine last week. The answer is a resounding maybe. I have not achieved my primary goals—eating or drinking anything but water still triggers a migraine attack and I still eat only once a day. But small improvements are increasing my quality of life.

  • More responsive to migraine abortive meds: I still take Amerge and Midrin after every meal, but they are more effective than before starting the diet. I can usually function through the slowdown of early migraine symptoms that follow eating and sometimes barely feel the symptoms at all. One dose of Amerge and Midrin also manage some trigger foods that used to knock me out, but only if I eat them infrequently. I will soon experiment with taking Amerge sans Midrin after I eat.
  • Decreased pain levels: My migraine attack pain is a level 3 most of the time. It still reaches 4 occasionally, but not as frequently as before. I’ve had one 5 since starting the diet. Five years ago, this would have felt miraculous, but pain hasn’t been my worst migraine symptom since 2013. Before the diet, level 4 pain was the norm and 5 was a little more frequent, but not substantially.
  • Decreased fatigue: I am more functional during some migraine attacks. The improvement is minor. But I’ll take it given that the fatigue used to knock me flat. I also have less overall fatigue, which I’m guessing is because Amerge and Midrin are more effective.
  • Improved cognitive function. Again, this improvement is minor but noticeable. A migraine attack no longer means I can’t write or read somewhat complex information. I can only write rough drafts and can’t translate journal articles. I can, however, get the gist of journal articles and have no problem with information for the general public, like press releases.

Are you wondering why I’m staying on a diet that is causing me to lose too much weight and become malnourished, but is only kinda working? It’s because I’m not fully settled into the diet yet. Here’s why I’m sticking with it a little longer.

Three months for a full metabolic shift

The metabolism fully shifts from burning carbs to burning fat after three months of ketosis, according to my dietitian. Cellular and mitochondrial changes that happen at three months could impact my migraine attacks (for better or worse). April 15 is my three-month mark. I started the diet January 3, but wasn’t consistently in ketosis until the 15th.

Diet side effects

I’ve had a variety of issues implementing the diet and won’t be confident I’ve given it a good try until I’ve resolved them. The major nausea six hours I’ve gotten after eating every day for more than four weeks has been a huge burden. After working with two dietitians and my naturopath and trying numerous remedies, I think the issue is dehydration. Drinking 96 ounces of water a day is not enough; it looks like I need 128 ounces to stay hydrated on this diet.

Then there’s malnutrition. My blood work keeps coming back with levels that are way off in different areas. In January, my liver enzymes were alarmingly high. They looked good in February. Now they are high again, but not as high as in January. That’s just one example, but any of these extreme fluctuations within my body could be triggering migraine attacks. Many of these things can be supplemented, but that’s another problem, which I’ll explain in the supplements section below.

Drug and supplement side effects

Zofran: The nausea has me taking 8 mg to 16 mg of Zofran a day. Normally I take 4 mg or 8 mg sporadically. It’s unlikely, but that increase could be increasing my migraine attack frequency.

Adderall: When I tried increasing from 10 mg of Adderall to 20 mg in February, I became even more reactive to food. My migraine attacks lessened in severity and became more responsive to meds when I went back down to 10 mg. Last Monday, I stopped taking Adderall altogether. For the first few days, I thought my food reactivity decreased, but then it seemed to increase. After a few rough days, I resumed taking 10 mg yesterday. I’m still not sure what the ultimate verdict on Adderall will be, but I need to make it before I determine if I’ll stay on the diet or not.

Supplements: Starting supplements to counteract malnutrition is likely an ever bigger factor than either Zofran or Adderall. Most supplements I try, even in very small doses, trigger migraine attacks that are unresponsive to medication. Another problem is that the preferred supplement to manage elevated homocysteine (my current blood work red flag) is 5-MTHF. That’s the supplement that triggered pretty severe depression the last time I took it to manage elevated homocysteine caused by malnutrition.

Managing wildfires

Managing a ketogenic diet for migraine feels like trying to contain a series of wildfires. As soon as I think one fire is under control, another part of the forest goes up in flames. Or the wind shifts and the fire I thought was contained flares up again. In a few weeks I’ll have to decide whether to keep fighting the fire or just walk away. So far, the improvements aren’t substantial enough to risk further malnutrition. But I keep hoping that after some of the fires are under control, I will feel better enough that the improvements are worth the risk.

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DAO and Diet: Does One Work Without the Other?

The short answer is maybe. The options in order of efficacy: 1. DAO and diet combined, 2. Diet alone, 3. DAO alone. There’s a very good chance the enzyme won’t be effective unless you also restrict your diet.

For me, diamine oxidase (DAO) has been very helpful only in conjunction with a low-histamine diet. From my experience trying to reintroduce foods, I am now positive that DAO alone would have done nothing for me. My dietician confirmed that. On our last call, she said “Even with DAO, you just can’t eat foods that are high in histamine. You just can’t.” Don’t panic, she was talking about me specifically, not everyone, and I’m an extreme case. (The link above will take you to a comprehensive Q & A on histamine intolerance and DAO. This one takes you to everything I’ve written about DAO.)

I’ve heard of a few people benefiting from DAO alone, but almost everyone who finds relief is also on a low-histamine diet. I know it’s a downer. Restricted diets can be a burden, especially at the beginning. It should tell you something that despite being frustrated and annoyed with my diet, I’m still sticking to it. Having times without migraine is just too precious and that only happens for me on the diet and taking DAO.

A few readers have told me DAO has been a magic bullet for them, but most who try it without diet modifications have no success or inconsistent results. Even with the diet and DAO, you may not get relief. If histamine isn’t a major trigger that sets migraine off in your body or gives you headaches, avoiding histamine or taking an enzyme that processes it won’t be of any use. Unfortunately, there’s no blood test or other quick, definitive way to figure out if this is the case for you.

I wish DAO were an easy answer and that the supplement could take the place of a restricted diet. Unfortunately, that’s just not the case for most people. And, unfortunately, it may not work at all for you — that’s just the nature of headache and migraine treatments.

Looking to buy DAO? You can get Histamine Block and Histame from Amazon. (I’m an Amazon affiliate, so I’ll get a small portion of the sales if you purchase through one of those links. I have no relationship, financial or otherwise, with any company that manufactures or sells DAO.)

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Rotation Diet for Migraine or Headaches

The cauliflower debacle never really resolved. Even after I stopped eating cauliflower, I began reacting to other “safe” foods I’ve restricted my diet to the last six months. Despair was knocking, so I did what I always do when I need a sense of control — I began to research. Rotation diets were my target.

Rotation diets have come up frequently in my reading on dietary histamine. The idea, as I was introduced to it, is that you don’t eat the same food more than every four days. That’s the preschool version of rotation diets. A true rotation diet involves rotating food “families” every four days. Food families are either botanical families (for fruit, vegetables, grains, oils and herbs) or animal families (fish, bovines, swine, etc.).

The quickest way to understand how this works is this four-day rotation guide (page 7 of the PDF). The belief is that it takes four days for a food to completely clear your system, so that’s why you need to wait. Also, if someone reacts to multiple foods in the same family, they should consider eliminating the whole group (no goosefoot for me). The science behind rotation diets is slim, but I know what’s working for me.

I started it 10 days ago and am thrilled with the progress so far. My migraines are far less frequent and disabling than they’ve been the last couple months (and they’re easy to abort with triptans and/or Midrin). My diet is way more varied than it has been in the last 18 months. I have’t thrown caution to the wind — I reference lists of foods that contain histamine, tyramine and benzoates (the best lists I’ve found are in Dealing with Food Allergies by Janice Joneja). Instead of avoiding those foods completely, I choose carefully which ones I test.

The rotation diet is allowing me to eat foods that were never a regular part of my diet (mangoes, dandelion greens, persimmons, pomegranates). It’s helping me identify more definite migraine triggers (nuts, cabbage, quinoa, beets). I’m also figuring out how frequently I can eat a food and in what quantity without a reaction.

Wondering why I’m so excited about this strict diet? Here’s a recap of the past 18 months: Failsafe; chicken, white rice and oatmeal; feeding tube formula; six to 10 fruit and veg that I ate every single day. I don’t know how many different foods I’m able to eat now — that’s major progress!

Some people are on rotation diets indefinitely. I’m hopeful I’ll be able to figure out what my thresholds are for certain foods and not have to follow the diet rigidly for long. It doesn’t feel like a permanent change to me, more like another part of the diagnostic process. I’m more optimistic about this diet than I have been since I started my current migraine diet journey in January 2012.

Want to learn more? Here are the resources I’ve found most helpful:

I included migraine and headaches in the title because I’m using it for migraine, but I’ve read that it can help with chronic non-migraine headaches as well.

7/17/14: If you have true food allergies, please seek the guidance of a health professional before reintroducing foods in a rotation diet! I only have food intolerances/sensitivities (not allergies) and am not at risk of a life-threatening food reaction.

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Testing if Your DAO Level is Low

Yes, there’s a test that measures diamine oxidase (DAO) levels in the blood. No, it’s probably not worth your time or money to get it done. (Wondering what DAO is? Start reading here and follow the links at the bottom of that post for more information.)

There are two issues. The first is there’s no well-established range of DAO levels. There’s speculation and you’ll find ranges listed, but they aren’t yet backed by solid science. Also, it’s not known whether the amount of DAO in your blood is indicative of how much is in your gut, which is where it really matters.

Genetic testing can show if you have mutations in the genes related to DAO production, but not how much you actually produce. While the test confirmed that I probably make insufficient amounts of DAO, dietary research, an elimination diet and testing DAO supplements were more informative.

The best way to find out if you’re low in DAO is to try taking the supplement. You can get small a bottle of the highest strength DAO for about $30. If you’re going for a high dose, use Histamine Block rather than Histame. (The Amazon link defaults to the more expensive 60 capsule bottle. Click on “30 Easy-To-Swallow Vegetarian Capsules” in the box below the “in stock” notice to choose the less expensive bottle).

It took about a month of playing with the amount of DAO I took and how long before meals to take it before I hit on the right set up for me. The label recommends taking two no more than 15 minutes before every meal. I’ve found each capsule covers about 400 calories, though I take more if I’m eating a high-histamine food, like fish. I currently take it about 8 minutes before eating (or even drinking coffee or herbal tea) and am sure to finish eating within 45 minutes. As you’ve read, the change was drastic once I hit on the right combination.

This was while eating a low-histamine diet, which I recommend trying. Even if you don’t, read the list of high-histamine foods and take extra DAO when you eat them. (Some of those foods are also high in tyramine, which has long thought to be a migraine trigger. DAO does not help process tyramine and there is no digestive enzyme that claims to.)

The capsules are expensive (about $1 each), so I initially felt a lot of pressure to take no more than I absolutely needed. For the sake of dietary variety, I’ve relaxed a bit and now err on the side of too much with foods I’m uncertain about. Other than pocketbook pain, I have no noticeable side effects. I thought heartburn was an issue for a while, but that has resolved (it was likely due to reintroducing fat after going so many months on a very low fat diet). I’ve been reassured that DAO is safe and that any that’s unused gets flushed right out. That’s why you have to take it before every time you eat — it doesn’t stick around.

I know many of you are hoping that DAO will help you as much as it has me. If you do decide to try it, play around with dosing and when you take it. If you get any relief from it, it might be another addition to your treatment plan. Every little bit adds up.

Still have questions? Please ask them in the comments or email me at kerrie[at]thedailyheadache[dot]com and I’ll try to answer them.

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Diamine Oxidase (DAO) is Why I’m Doing Better

The Amazing Feat of a Normal Life prompted a lot of questions about why I’m feeling so much better. It’s still the digestive enzyme, diamine oxidase (DAO), that I started in January. (To learn more, read The Post I Never Thought I’d Get to Write and follow the links at the end for more details. If you want to try DAO yourself, you can get it through Amazon. Even though it’s called Histamine Block, it isn’t an antihistamine and doesn’t block histamine.)

I continue to follow a restricted diet, though that’s more about wanting to reintroduce foods slowly and methodically rather than any particular food being a problem. As long as I take DAO, I’m doing great with nearly every food I try (even dairy and wheat). I’ve even tried a few high-histamine foods (with a little extra DAO) and have done fine.

The other dietary change is that I’m eating most foods on a rotating schedule, leaving two or three days between each time I eat a particular food. I began this when I developed an intolerance to coconut after eating it multiple times a day for months without a problem. This has been a very effective way to vary my diet.

It’s a slow process, but I’m getting almost complete nutrition from the foods I eat (I’m still a little low on calcium). I eat mostly vegetables, though I have salmon a couple times a week and am currently testing eggs and milk.

That’s it. I’m past the three-month placebo window and continue to feel better than I ever thought possible. I know DAO is an unconventional migraine treatment. I know the science behind it is weak. I also know it’s working better for me than anything else I’ve ever tried.

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