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Exhausted and Frustrated By Migraine Diets

blank menuI narrowly avoided bursting into tears at a Thai restaurant last night. Hart and I are in San Diego with a dear friend for the American Headache Society conference. I wanted to spend time with them and (inexplicably) thought watching them eat one of my favorite cuisines wouldn’t be a problem. The wonderful smells hit me half a block from the door. I lasted long enough to snag a table while Hart and our friend ordered, then jumped up and nearly ran to get away from the reminder of how much I’m missing with these endless migraine diets.

Similar incidents have become more frequent in the last year, though this was the worst one. I usually stay home to avoid them altogether. After three-and-a-half years on restricted diets, being around food became agonizing. That was a year ago. Now I’ve been on restricted diets for four-and-a-half years and everything I eat or drink other than water has been a trigger for 15 months. Nearly every day I wonder how much more I can bear.

One of my favorite things—which is also required for survival—is a minefield. I worked for years to determine my migraine triggers. I did exactly what doctors and patient advocates and every migraine book say to do. The task felt impossible, but I finally found my very worst trigger. And learned that while my health care providers are compassionate and apologetic, they don’t know how to help. I become overwhelmed by the injustice of this if I allow myself to think about it.

I’m not trying to hold back the grief, but am trying to experience it without increasing my anger and sadness by dwelling on the unfairness. But both grief and a sense of unfairness are always lurking. Thinking about food fills me with dread. I don’t join my friends and family for meals. I rarely bake and don’t enjoy it when I do. I no longer express my love by feeding people. I am sacrificing an essential part of myself (my self) to satisfy the migraine gods. In my most frustrated moments, I am convinced the migraine gods scoff at my offering.

I have felt like I’m on the verge of breaking for months. I want desperately to stop the diet, but feel like I can’t. The ketogenic diet continues to keep me somewhat functional. I want nothing more in the world, so I keep eating this way. For now. I know that every other food-based intervention has eventually quit working. This one will almost certainly expire, too. I haven’t broken (whatever that would look like) because I can imagine the future. I would be furious with myself for throwing away low-migraine days when they were possible.

People often assume the only reason I can stay on these diets is because I don’t care about food as much as they do. I so wish they were right. Food is one of my core values. Figuring that out with my therapist last summer was illuminating. All my grief and frustration aren’t about not being able to eat what I want without having a migraine attack. They are about having an essential part of my being eclipsed. These diets are technically a choice, but the other option is being eclipsed by more frequent and severe migraine attacks. I’d be trading a bad situation for an even worse one.

Tenuous and fragile are the adjectives that have dominated my year. The current incarnation of my diet is allowing me to function somewhat, but for how long? This is the last diet on the list for me to try, so what happens if/when it stops working? (That’s a rhetorical question. Please don’t give me suggestions, they will only inflame me right now.) What treatment is next? Where do I go for guidance when medical knowledge has reached its limit? (That’s another rhetorical question. No suggestions, please.)

Even my parenthetical statements show how fragile I am right now. I know I’ll figure something out. I’ll find more information and more treatments to try. I am not defeated, just exhausted. And so frustrated.

I’m in San Diego for the AHS conference, but am unlikely to be up to attending any of the sessions. I’ll still try, but self-care is my backup plan. I’ll read and enjoy the cooler air. I’ll take a look at the ocean. Maybe I’ll book a massage. I’ll spend whatever time I can with loved ones. As long as it’s not while they’re eating.

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Ketogenic Diet for Migraine: A Comprehensive Introduction

I’ve told you about my difficulties starting a ketogenic diet for migraine and have tried to assess whether it is working for me, but haven’t told you how the diet works or why I decided to try it. Here’s a comprehensive introduction to using a ketogenic diet for migraine. It’s based on five months of research and more than three months of living with the diet.

Why a ketogenic diet?

Diet and headache was one of the presentations at the American Headache Society conference last November. Topics included biogenic amines (including tyramine and histamine), MSG, food allergies (actual immune responses rather than food sensitivities), gluten, low fat diets, a ketogenic diet, a high omega-3/low omega-6 diet, and a low-sodium diet. The research on a ketogenic diet for migraine was small and the results weren’t overwhelming. But I’d tried almost everything else the presenter mentioned and was feeling desperate. In the last couple years, I’ve heard more anecdotal evidence of it being effective for migraine and my naturopath recommended I look into it.

This was not my first flirtation with a ketogenic diet for migraine. I’ve looked into it multiple times over the last decade, but couldn’t find enough information to do one on my own. Until recently, the information was tightly controlled by doctors and dietitians who work with epilepsy patients. That’s because ketogenic diets are not nutritionally complete and can have serious side effects. As ketogenic diets have become really popular for weight loss, more information has become available. Simultaneously, some of the gatekeepers of the diet for epilepsy began to share details. Here’s what I’ve learned.

What’s a ketogenic diet?

Ketogenic diets shift the body’s fuel source from carbohydrates to fat. Burning fat for fuel causes the body to produce a substance called ketones, which is why the diets are called ketogenic (keto = ketones, genic = producing). When you produce ketones, you are in a state called ketosis and your metabolism mimics fasting or starvation. While that doesn’t seem like it would be a good thing, it works pretty well for treating epilepsy. Medically, ketogenic diets have been in use for epilepsy for nearly 100 years. They are increasingly being used for other conditions, like brain tumors, traumatic brain injuries, and autism, and have recently become popular for weight loss.

What are the different types of ketogenic diets?

ketogenic diet percentagesThe classic medical ketogenic diet is 90% fat. It’s referred to as a 4:1 ketogenic diet—which means that for every four grams of fat, you eat one gram of protein+carbohydrate. This is not a high-protein diet; the goal is to just meet your recommended daily allowance of protein. Your carb count is whatever is leftover in the protein+carbohydrate equation.

That’s the classic ketogenic diet, but there are many variations. For epilepsy, a 3:1 ratio tends to be the starting point for infants and teenagers. The Modified Atkins Diet is becoming increasingly popular for epilepsy, particularly for adults; it contains about 63% of calories from fat. Ketogenic diets for weight loss aren’t as strict in their breakdown. They range from about 60% to 75% calories from fat, 15% to 30% calories from protein, and 5% to 10% calories from carbohydrates. A quick internet survey found that the typical weight loss formula is 75% fat, 20% protein, and 5% carbohydrates.

[click on chart to enlarge]

What’s the best ketogenic diet for migraine?

It depends on the person. Some people see results at lower levels of fat, while others need higher amounts. Start with the lowest ratio you can and work your way up. Readers have reported success on the Modified Atkins Diet. I didn’t get noticeable relief until I worked up to a 3.5:1 ratio; my migraine attacks were worse when I increased to a 3.75:1 ratio (possibly because my blood sugar got too low).

How long does it take to see migraine improvement on a ketogenic diet?

Some people see improvement within a week of starting the diet or increasing their ratio. Almost everyone who sees improvement sees it in the first month. However, it takes about three months for the metabolism to fully shift, so some people don’t see results until a few months in.

It’s also important to manage adverse effects, which could worsen migraine attacks. I became hypoglycemic on the diet and hypoglycemia is a migraine trigger. Since I got the hypoglycemia (mostly) under control, my migraine attacks have been less severe. I can even eat small amounts without triggering an attack.

How long do you have to say on a ketogenic diet for migraine?

Kids with epilepsy can often be on the diet for a year or two, then return to a fairly normal (though generally lower carbohydrate) diet. My dietitian said it often functions as a sort of reset, but does not require a permanent change. Less is known about how adults respond to the diet. In one book I read, a woman in her early 20s with epilepsy had been on the diet nine years with no plan to stop. In naturopathic circles, it is often talked about as a lifelong change. For now, I think it’s an individual thing depending on the severity of your symptoms, your triggers, and how long your migraine attacks have been at their current level.

Why are medical ketogenic diets successful?

Almost all the research is on epilepsy. No matter the illness, the answer is that no one actually knows. Researchers have tested many hypotheses in the last century, but have not come to any conclusions. Ketosis is the probable cause, but that hasn’t been proven. Some researchers speculate that ketosis isn’t actually what’s responsible for improvements, it’s just the visible marker of some other physiological change. In the study on a ketogenic diet for migraine presented at AHS, the benefit could have come from weight loss rather than ketosis.

Why are the risks of ketogenic diets?

Ketogenic diets are not nutritionally complete. Carbohydrates are so restricted that you can’t eat enough vegetables and fruit to get adequate nutrition, so supplementation is imperative. Side effects can range from mild annoyance to death. Although highly unlikely, patients have died in multiple studies of ketogenic diets for epilepsy. Those deaths are typically attributed to hidden metabolic disorders, but it’s still important to be aware of the potential risk.

Please, please do a lot of research before jumping into a ketogenic diet and consider working with a dietitian. I’ve had a DIY approach to my diet for years and would have done this one on my own had I thought I could safely manage the 4:1 ratio without a dietitian. I’m so glad I didn’t. Even working with two dietitians and a naturopath, having blood work every month, and being hypervigilant, I’ve had issues with my blood becoming too acidic, hypoglycemia (that went undiagnosed for five weeks despite the best efforts of my health care team), and wildly fluctuating liver enzymes and inflammation markers. While my migraine attacks have been better on the diet, I overall feel less healthy than before I started it.

The popular version of the diet is less potentially damaging to health than the classic medical version, but I’ve heard enough scary stories from smart people who have educated themselves on the diet to urge anyone considering it to work with a dietitian, at least to start.

What about weight loss?

This diet is popular for weight loss for a good reason—it works. Because the diet mimics starvation, it suppresses hunger. And if you’re doing a 4:1 or 3:1 ratio, you have to weigh everything you eat, so you know exactly how many calories you’re getting. Even though my dietitian kept increasing my calorie intake, I lost 20 pounds unintentionally. My weight finally stabilized when I got to 2,300 calories a day—600 calories more than my dietitian thought I should need and more than I’ve eaten in years. I have yet to gain any of the weight back.

Learn More About Ketogenic Diets

Google “ketogenic diet” or search for it on Amazon and you’ll find information for bodybuilders and people who want to lose weight. That might be the best approach for you, but I recommend starting with the epilepsy-related information. It provides a foundation that explains the medical uses for the diet, is based in solid science (whereas much of the popular information is from not-quite-accurate interpretations of research), includes rational assessments of risks, and explains how to follow the diet in a way that doesn’t otherwise compromise your health. The following resources contain excellent information and were my sources for this post.

Even if you read nothing else, start with these:

More good resources include:

  • The Charlie Foundation and Matthew’s Friends (Nonprofits started by parents of children with epilepsy who have benefited from ketogenic diets. Both sites have good introductions to the diets and helpful guidance. The Charlie Foundation’s information is written or reviewed by a leading dietitian in the field.)
  • Fighting Back With Fat (A book by two moms who have implemented ketogenic diets to treat their children’s epilepsy. *Amazon affiliate link)

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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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Gastroenterologist, Adderall, and Migraine Status

Gastroenterologist & Headache Specialist

I’m sorry to report that I didn’t learn much from the gastroenterologist (I know many of you were eager to hear something that might help you). He doesn’t think it’s a functional GI problem, but is a neurological problem. He said he’d be willing to do the tests if I wanted them. I went in thinking I’d do them no matter what he said; now don’t think I will. After four years of exploring other avenues, I am inclined to agree with him that the issue is neurological. I asked about using preventive migraine meds that would target the neurotransmitters and hormones that are released at the start of digestion. He shook his head and said he was sorry that he couldn’t help with that. I asked my headache specialist the same day and got more information, but still the same outcome—it is impossible. He said that the body is flooded with neurotransmitters during digestion. It would be impossible to pinpoint which one or ones are problematic. Even if we could, it’s unlikely there are drugs that work on those neurotransmitters.

My headache specialist did confirm that there’s a small set of people who have migraine attacks triggered by eating anything. I told him that it almost seemed reasonable to stop eating for a couple weeks. He told me about another patient whose migraine attacks are triggered by eating—she wound up in inpatient treatment for eating disorders because she was so afraid to eat. He also said that she’d been in the week before me and was doing great. He couldn’t remember what drug she was on, but was going to look into it for me. I’m about to call the office now and will report if I get any information.

My chart notes from the headache specialist say, “I told her that it is important that she obviously continue to eat, and that if we find the right preventive regimen she will be able to eat without triggering an attack.” It summarizes much of the appointment. He also made it clear that he understands that my case requires straying way off the path of typical preventives. We’ve been off that path for a long time, now we’re on the verge of proceeding as if there were no path at all. He prescribed Celebrex and Adderall for preventives (more on that in a minute). And, if those don’t work, we’ll try monoamine oxidase inhibitors. MAOIs used to be used a lot for migraine preventive, but require strict adherence to a restricted diet to avoid a life-threatening reaction. Good thing that my ability to adhere to such a diet is so well-established. That drips with sarcasm, as it should, but I’m game if MAOIs are effective for me.

Adderall

What those of you with fatigue want to hear about is the Adderall. My headache specialist has several patients who have had a reduction in migraine attack frequency on stimulants. I tried Ritalin a few years ago. It wasn’t an effective preventive for me, but it gave me energy… for a week. Then it did nothing. I’ve been on the Adderall for just over three weeks now. Whether it’s working as a migraine preventive is still up for debate. What it is doing is giving me enough energy that I’m not glued to a horizontal surface all day every day. It’s not giving me crazy amounts of energy, more like returning me to my energy levels on non-migraine days in 2014. I’ve been terrified that it wouldn’t last, so I’ve been cramming in as much activity as possible.

Three weeks in, it feels a little more like the energy is here to stay, but three months is the critical point for me. I’ve had some drug side effects last that long, then disappear. I don’t think my energy is a drug side effect, but I still can’t believe that it will last. I have had slightly less energy in the last week than in the two previous weeks, but I’m holding out hope that’s diet-related.

I expect Adderall is probably only providing me with symptomatic relief. I’m OK with that, but am hopeful it will also work as a migraine preventive.

Why I’m Not Writing

For more than a year after I started taking DAO, all I wanted to do was write. I had a million other things I wanted/needed to attend to, but writing was my priority. Now it’s like pulling teeth. It doesn’t feel like I have cognitive dysfunction in day-to-day life, but trying to write tells me otherwise. It’s not enough to interfere with decisions or driving, or even show up in most conversations. But it’s enough that I can’t do my highest levels of mental activity—like reading medical journal articles and writing.

I’m using my physical energy to do the other thing I’ve daydreamed about: work on my house. I’m in the middle of painting the kitchen cabinets and have enlisted Hart’s help in moving furniture. I’m planning which cork flooring I want to replace the bedroom carpet with and choosing color schemes. I’m thinking about which plants will fill our yards. I don’t know how much we’ll be able to do right now (either ourselves or hiring someone), but at least there will be a plan in place that I can execute even if I’m laid up.

Migraine Status

I still have a migraine attack every time I eat, but I only have to take Amerge to stop it (not Midrin, too). The migraine doesn’t knock me out within five minutes of eating; sometimes I can wait an hour after eating before taking the triptan. And the triptan keeps me from feeling anything more than minor migraine symptoms before it does the trick. It seems ridiculous that this feels like progress, but I’ll take what I can get.

I’m still on the same diet—eating anything else results in a migraine that drugs don’t eliminate. Those migraine attacks aren’t too bad, but do sap my energy for the next day or two (even with the Adderall). Since I don’t believe the Adderall will last, I’m not willing to waste a single day. I’m also still eating only once a day. That’s so I only have one migraine a day and can keep an Amerge in reserve in case another trigger, like odors, set another attack in motion. Tolerex (the feeding tube formula) became a trigger this spring; I’m planning to try it again in the hope that a two-week reset will help reduce my food sensitivity.

The Adderall or Celebrex could be responsible for my reduced sensitivity, but stopping the probiotic might be, as well. I have no doubt that my GI symptoms were caused by the probiotic and there’s a good chance my renewed sensitivity to all food was, too. I stopped taking it in late August and my GI symptoms have been slowly resolving since then (they are almost completely gone). It would make sense that I have a gradual reduction in migraine frequency as well. It took three months of a ridiculously high dose of probiotics for the GI symptoms to start and six for the food sensitivity to return in full force. So I tell myself it took six months to get into this mess, it will take at least as long to get out of it.

I’m Not Gone for Good

I’m not sure how much posting I’ll be doing for a while, but will be back soon(ish). I hope to at least respond to comments in the next few weeks. I miss interacting with you all and I miss writing. I am, however, pretty happy with how my kitchen cabinets are coming along.

(I don’t have the brainpower to edit this post. I appreciate you muddling through the typos and hope it makes sense.)

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Out of Comission

My health has been on a steady slide since June. I’ve spent the last six weeks mired in horrendous fatigue. I cannot think and can barely function. My frustration is high. I’m scared of what’s to come and grieving for what I’ve lost. Overall, I managing to stay relatively optimistic and present in the moment, but I have some bleak times.

There’s more to tell you than I’m able to write. I’ll leave you with the best news I have right now: a gastroenterologist has finally agreed to see me. There has to be a reason I get a migraine every time I eat; whether or not that reason can be found remains to be seen. My appointment is on October 6 and I see my headache specialist on October 7.