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Diet Update: Beyond Frustration; Debilitating Chronic Migraine Looms

After my eagerness to meet with a dietician, you might have expected an update on how the appointment. I intended to write one. It was to be about the foods she recommends people with headache disorders avoid (histamine, tyramine and benzoates) and her interesting schedule for reintroducing foods. I was so excited to tell you all about it… until I tested my first food and the frustration returned threefold. Since then, I haven’t been able to talk — or even think — about my diet without crying.

Frustration is no longer even close to an adequate representation of my emotions. I can’t sort out if a food is a trigger or not, if my symptoms are connected to a particular food or to eating in general. I can’t tell if I would have gotten a migraine if I hadn’t eaten a certain food or not. I can’t identify how much of a role other triggers are playing in all of this. It’s like I’m constantly banging my head against the wall.

What I do know is that I always feel worse on days I test foods. That eating ANYTHING, even my “safe” foods of chicken breasts, white rice, and oats usually makes me feel worse. That the issue doesn’t seem to be certain foods, but food itself. My naturopath’s hypothesis that I have a inherited metabolic disorder is sounding more and more plausible. I won’t if that’s the case until I get the results of genetic tests. (Check out WebMD overview of inherited metabolic disorders for an excellent short introduction to the topic.)

I also know that I feel trapped. Trapped between getting good nutrition and feeling horrible all the time. Testing foods has already increased the frequency of my migraine attacks as well as the severity of all my symptoms. My head pain is back to a level 5 or even 6 almost daily. Violent bursts of nausea shock me out of sleep at night. My equilibrium is distorted enough that I have trouble standing up and walking straight. I’m weak and shaky. My knees occasionally collapse when I walk. The effects are mitigated somewhat by only testing foods every other day, but the severity of the symptom is steadily increasing. I wonder how much longer it will be before the drenching night sweats and nightmares, which accompany my severe nighttime migraine attacks, return.

I fear the enormity of the pain and discomfort that are creeping up, preparing to overtake me. Malnutrition appears to be the only way I can keep them at manageable levels, but that’s taking too great of a toll on the rest of my body. I don’t want to give my life back over to chronic migraine, but I can’t continue starving my body of nutrition.

Debilitating chronic migraine’s return appears imminent. It’s breaking my heart. These last few days, it feels like it’s breaking my spirit, as well.

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RPAH/Failsafe Diet for Migraine & Headache

The low histamine and salicylate diet that seems to be helping me is referred to as either the RPAH diet or the Failsafe diet. Originally developed by the allergy unit of Royal Prince Alfred Hospital in Australia (that’s the RPAH part), the diet was popularized under the name Failsafe by a woman whose daughter was helped by RPAH. The name Failsafe comes from the diet being free of additives and low in salicylates, amines (including histamine and tyramine) and flavor enhancers.

Calling the diet “flavor-free” sounds snarky, but it’s an easy and accurate summary. Naturally occurring food chemicals are responsible for the flavor in foods. Without them and without artificial flavors and chemicals, the diet is pretty bland. However, it is not a permanent dietary change. The idea is to cut out all these possible food chemicals for two to four weeks, then slowly add them back in, testing to see which ones are problematic for you.

This diet was developed for treating behavior problems in children. You’ll find people online saying the diet has helped them with a wide variety of health issues, from eczema to migraine and headache to heart palpitations. All the evidence is anecdotal, but if you’re really sick and no conventional or alternative treatment seems to help, it is worth a try.

The diet is drastic: check out this two-page list of allowed foods (PDF). This list, which I printed and keep on my coffee table, includes common pitfalls and mentions other chemicals in allowed foods. Even though potatoes are allowed, I discovered this week that I react to them, perhaps because they have naturally occurring nitrates. Working with a nutritionist is the best way to maintain proper nutrition without losing your mind.

Where to learn more:

Failsafe WordPress Blog: This blog is a superb resource and is where the aforementioned two-page list comes from. It is really all you need to get started on the diet.

RPAH on Food Intolerance: The original source, which doesn’t have a ton of information online, but the overview is particularly helpful. You can order the diet handbook from them for about $80 (including shipping from Australia), but it doesn’t seem necessary.

Food Intolerance Network: This website is run by the woman who coined the name Failsafe. The amount of information is a bit overwhelming, but the site answers a lot of questions. Check the US shopping list (PDF) for specific allowed foods.

Allergy Friendly Food: I ordered this book used from Amazon (much less expensive than ordering it directly from RPAH) and reference it a lot. This and the Failsafe WordPress blog are my go-to resournces.

The Failsafe Cookbook is good if you’re looking to get the most flavor possible while on the diet. I bought this book, but haven’t used it because many of the foods (like nuts and dairy) are ones I’m avoiding for other migraine-related reasons.

Keep in mind that I haven’t started the “challenges” yet. Once I begin testing which foods/food chemicals I can tolerate, my list of recommended resources may change. Also, most of the information is from Australia, so product information isn’t always relevant and you may need to do some translating.

After writing this all up, I’m struck by the fact that I’m not following the RPAH/Failsafe diet, although it was my starting point. Because of a stomach virus, the results of an ELISA food allergy test, and foods I’m pretty sure are migraine triggers for me, I’ve eaten mostly chicken and rice for the past week. My head feels better than it has in a decade, but this is not a healthy diet for the long-term. I’m definitely scheduling an appointment with a nutritionist.

P.S. In your reading about the diet, you’ll see toiletries mentioned. Many body and beauty products contain salicylates and histamine and it is recommended that you avoid those as well. I’m working on another post about that.

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2012: A Year of Remarkable Personal Migraine Progress

Exactly one year ago tomorrow, I had a massive breakdown. Sobbing, I proclaimed that I wanted out of this life. I didn’t want to fight anymore; I didn’t want to live with chronic migraine any longer. I even wished for cancer so that I could choose to not treat it, thus dying without technically committing suicide.

Today, my head pain is at a level 4, which is the highest the pain has gotten in a week. In the past four months, the pain usually topped out at a 5, occasionally a 6. Still far from comfortable, that’s way better than daily pain that hits a level 7 or 8, where I was last January. I don’t know how these pain ratings appear to anyone outside my body, but to me, pain reduction of even a single number is cause for celebration.

In the 11 years that chronic migraine has been the focus of my life, last year was the first in which I made significant progress in reducing the severity of attacks. I tried more than three dozen medications in that time and countless other Western and alternative treatments and diets, none of which had any effect. To see any progress is amazing to me; to now be at a place where I expect even more improvement than I currently have experienced is astonishing.

Though you’ve read about my progress through the year, here’s a summary of what’s working for me:

Magnesium: Although I had been on magnesium before with no success, I noticed an improvement  increasing the dose to 700 mg. After trying IV infusions to see if they would be more effective (they weren’t), I ultimately pushed my daily oral dose to 1,000 mg.

Cyproheptadine: The starting dose of 4 mg was enough for me to feel a bit better. Each 4 mg increase brought additional relief until I hit 16 mg, which didn’t seem to be any better than 12 mg. I’m back at 12 mg, though will probably try increasing it again, to be sure that I wasn’t just having a bad week the first time I tried 16 mg.

Diet: It has been a year since I started an extreme version of a traditional migraine elimination diet. Until a month ago, the diet was horribly frustrating. It seemed like both nothing and everything I ate were triggers. I wondered if there were other aspects of foods that I was unaware of that could be triggers. Then a reader mentioned that she feels better when she avoids foods with histamine. This started major research and an even more drastic diet to cut out amines and salicylate.

The initial improvement started to look like a fluke as the migraine attack severity returned to previous levels. A week ago, I switched from ground dark turkey meat to skinless chicken breast as my main protein source and the migraine severity dropped to a level 4. I’m still tweaking the diet and waiting to see a nutritionist. It will be a long process as I test out foods I’ve been avoiding, but I really think histamine and salicylate content in foods and body/beauty products is a major component of my debilitating migraine attacks.

I have so much more to tell you! There’s a detailed post about the diet coming later this week. First I needed to write this overview to remind myself of the massive improvements that 2012 brought. Sure, I still feel worn out and discouraged at times, but every little bit of progress shows me that chronic migraine is necessarily not a life sentence. A year ago, I was convinced I’d never escape that prison.

I was basically the prototype of chronic intractable migraine. (In a bizarre sort of way, that sounds like bragging.) Ten years with no improvement. Countless doctors, naturopaths and all manner of traditional and alternative health care providers have given up on me. I had given up on me. If I can see improvement, so can you. The struggle may be long and arduous, but there is always, always hope. Hang in there.

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The Connection Between Tyramine & Migraine

Tyramine is one of the primary substances that migraine diets attempt to eliminate. Tyramine occurs naturally in many foods and increases in potency when the protein in food ages. It is though to trigger migraine by dilating then constricting blood vessels in the brain, setting off a chain reaction that leads to a migraine episode.

It is important to avoid foods that contain tyramine, but also to eat food that is as fresh as possible to avoid the additional tyramine that develops as food sits. This is the most daunting part of the diet for me. Foods (especially high-protein foods like meat) should be cooked within a couple days of being purchased and leftovers should be frozen within 48 hours. To eliminate as much tyramine as possible, I cook or freeze ingredients within 24 hours of purchasing them and freeze leftovers within 24 hours of preparation. Frozen vegetables are an easy way to do this and they are usually picked and frozen at their nutritional peak.

Additional information:

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The Disappointment of Failed Treatments & Rallying to Try Again

I’m really struggling with the migraines right now, both physically and emotionally. It has been eight weeks since I got Botox injections and I’ve seen no improvement in the migraines. They are actually more frequent and more severe than before the injections, though I can’t say whether the Botox made them worse or if it is coincidence. It is always disheartening when a treatment that seems miraculous for many people, like Botox or Topamax, fails. I spent January grieving for the loss of yet another potential treatment.

Intractable does not mean untreatable; it means unruly or difficult (but not impossible) to treat.” It has been five years since I wrote those words. Five years of worsening migraines and countless attempts at treatment that have all been ineffective. Clinging to the promise of finding an effective treatment sometimes feels like an exercise in self-deception.

Yet, here I am, cheered by the thought of a new drug I’m going to try and the treatment possibilities I’m going to talk to my doctor about. I’ve been talking with Hart about my plan to schedule appointments with my headache specialist for every two months and the journal articles I plan to take him on my next visit. Just as the severity of the migraines is cyclical, so is my hope for treatment and the enthusiasm with which I pursue new avenues.

The nature of migraine symptoms contributes to my wavering dedication. Fatigue, lethargy and brain fog make research and phone calls difficult. Sometimes I’m too sick to keep appointments (I’ve canceled three in the last week alone). The accompanying emotional upheaval, including irritability, anxiety, and depression-like feelings, can cause the search for relief to feel fruitless.

So, ten years after a doctor first took my migraines seriously, I continue to search. Here’s what’s next on my plan of attack:

  • Diet: I’ve been following an extreme migraine diet for three weeks. In addition to avoiding tyramine and tannins, as I wrote about, I haven’t been eating any other suspected food chemicals, such as nitrates/nitrates, sulfites/sulfates, caffeine, phenylethylamine (in chocolate), MSG, and aspartame. I’ve noticed no improvement on the diet and my skepticism of food triggers remains. I’ve recently reread ACHE’s excellent article that questions the validity of food triggers and am going to reevaluate my plan.
  • Preventive medication: My headache specialist is sending me a prescription for Sibelium (flunarizine), which is a migraine preventive commonly used in Canada that doesn’t have FDA approval for use in the U.S. (presumably because the company doesn’t want to spend the money necessary to get approved). With side effects of weight gain, lethargy, and depression, I’ve been reluctant to try it. Having spent the vast majority of the last two months in a migraine, I finally decided that if it helps, the benefits to my mental health will outweigh the potential risk. I’m still nervous, though knowing I can just stop taking it (unlike the Botox, which I have to let wear off) gives me a helpful sense of control.
  • Platelets: I know so little about this that I’m a little reluctant to even mention it. Someone on the Migraine Research Foundation Facebook page said that her doctor told her of a patient whose migraines subsided when he donated platelets. I’ve also read anecdotal evidence of people’s migraine attacks stopping when they were on Plavix, a blood thinner. What I’ve learned is that some people have too many platelets, which can cause headaches, and also that platelets “tend to become sticky and release serotonin which is intimately involved in the migraine process.”

In the first draft of this post, which I wrote last week, I said, “I am tired. Tired of being sick, tired of having to claw my way out of bed every morning. I don’t feel depressed in the clinical sense, but being sick is wearing on me.” Since then, I’ve determined that I definitely was depressed, but I also had a migraine reprieve. Over the weekend, my pain reached the low of level 3 and I spent eight hours at a level 4. I was reminded that I don’t always have a horrendous headache and that I’m not always in a migraine attack. A little relief goes a long way in bolstering my spirits. Don’t worry, Mom, I’m once again happy and motivated!