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Mast Cell Disorders, DAO & Food Trigger Testing

While I have no trouble writing about my emotions in relation to treatments or life with chronic illness, telling you the details of my treatment makes me self-conscious of talking about myself. Here’s an update for those of you who are curious about my mast cell disorder exploration, success with the digestive enzyme diamine oxidase, and sorting of food triggers.

Mast Cell Disorders
The mast cell specialist was kind and knowledgeable. He did a full mast cell disorder-related work up (including the fourth time in a month that I had to do a 24-hour urine collection) and a bunch of food allergy tests. Everything looked great. No mast cell disorder and all negative responses to food allergies.

Mast cell disorders aren’t too well understood, so there could be other markers to test for eventually, but I’m not concerned. When I add up the results of those tests, my symptoms, the genetic testing that showed DAO-related mutations, and my great response to DAO, I’m pretty well convinced there’s no mast cell disorder here. For which I am very grateful.

Diamine Oxidase (DAO)
Sunday marked eight weeks since I started taking the digestive enzyme DAO with every meal and I’m still doing really well with it. I use the Histamine Block
brand most often, but occasionally supplement with Histame, which has a lower dose in each capsule, for drinks or snacks. I get heartburn if I don’t eat enough calories or drink enough water when I take DAO, but that’s easy to remedy. Other than the thrill of finding something that keeps me from having a migraine every single day(!), there’s not much to tell.

Food Testing
Unfortunately, I still have migraines most days while I continue to test (and react to) foods and sort out what my other non-histamine-related food sensitivities are. As soon as I recover from one migraine, I jump back into testing foods, which frequently triggers another migraine. Testing foods seems like it would be straightforward, but it’s extraordinarily complicated. There’s the food itself, but the build up of certain naturally occurring food chemicals, types of food, and even quantity also figure into the equation. I will spare you the boring details (which my poor, sweet husband has had to listen to for months). It’s messy and confusing, but I’m making progress. I’ve never been so excited to eat kale, cauliflower or zucchini and I’m over the moon that decaf coffee doesn’t appear to be triggering migraines or other headaches.

Related posts:

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Breaking the Fast: A New Headache Pattern

Breakfast may be the most important meal of the day, but I’ve come to dread breaking the fast. No matter what time I eat my first meal of the day, anywhere from 5 a.m. to 1 p.m., it kicks off a downward spiral.

For the last two weeks, I have little head pain and a lot of energy before breakfast, then I eat and slowly fade over a few hours: my head pain increases, my mind gets muddled, I get so sleepy. The changes are barely noticeable at first, but this migraine or headache (not sure which it is) makes it difficult to push through the day. Eventually I succumb to a nap for a couple hours in the early afternoon. I awake refreshed, with only minor head pain (level 2 or sometimes 3) and am able to think, stay awake, and be productive for the rest of the day.

Breaking an overnight fast seems to be the trigger. Whether I have chicken and rice, rutabaga, or cabbage at breakfast*, the slow onset of headache, brain fog, and fatigue is inevitable. Eating these same foods after the afternoon nap doesn’t bring on a headache or migraine.

Medication seemed a plausible factor, especially because antidepressants are thought to exacerbate Failsafe food sensitivities and Cymbalta is the one drug I only take in the morning. I’ve tried taking it and waiting a couple hours before eating, once even stretching the gap to four hours with a yoga class in between. On those days, I don’t feel bad (just hungry) until after I eat, then I feel worse quickly instead of having a slow fade. The nap doesn’t have the same reviving effect on those days, though.

The new pattern is actually nice. Instead of reading at the end of the day, like many people do before bed, I do it after breakfast because I’m too fatigued to do anything else. I’m energized in the late afternoon and evening, so that’s when I go to yoga, write, and do chores. (Bonus: I get a fantastic energy boost following evening yoga and the pain drops to a level 1 until I eat again.)

Although having some sort of schedule for the first time in forever is fantastic, eliminating these crashes would be even better. Does anyone else experience a similar pattern? Please let me know if you have any clues as to what might be going on — and how to deal with it!

*Wondering why I choose such odd breakfast foods? Read about the Failsafe diet I’m trying for migraine and chronic daily headache, starting with the last post first. I really think it’s working!

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The Everlasting Search to Pinpoint Migraine Triggers

It never fails. I return home from a trip* and a migraine hits within a few hours. As always, there’s the urge to figure out what went wrong, what triggered the migraine. I could blame it on insufficient protein in my breakfast and lunch, restless sleep, not drinking enough water, or the mere fact that I was on an airplane for three hours. Or I could use the commonly cited trigger of stress — the stress of travel, the stress of returning to the demands of normal life, the stress of leaving friends, or the stress release upon being home. (Whether stress is actually a trigger is debatable.)

Practically anything, whether it is positive, negative or neutral, could be a trigger. Eating a particular food? Not eating enough? Eating too much? Inadequate sleep? Excessive sleep? Weather changes? Schedule disruption? Flying? Any of these could be a trigger. This is the trouble with migraine. (Well, actually, there are many troubles with migraine, but this is the one that ignites most of my fruitless worry and unfounded self-flagellation.)

Not only is the field of potential triggers wide open, they are additive. Something might not be a trigger in isolation, but add on a couple more triggers and the attack begins.

What most triggers have in common is that the migraineur can be blamed for causing them to happen. “You have a migraine? Well, if you had taken care of yourself by sleeping/eating/breathing correctly, you wouldn’t have gotten it.” This seems to be the attitude of the general public. And we migraineurs are pretty quick to judge ourselves, too. Of course we don’t want to have migraine attacks and changing our behaviors or diets is one potential way to feel like we have some control over this illness. More importantly, it could reduce the frequency of attacks, which must be a universal goal among migraineurs.

Triggers are absolutely real. But they are also different for everyone. And sometimes you can follow all the rules and still have a migraine attack. That’s the case for me 95% of the time, yet I still have a migraine nearly every day. I feel like I must be doing something wrong, but have no idea what it is.

*I wrote this last week after returning from a wedding in Minneapolis. It devolved into a rant, so I let it sit a while before editing and posting.

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My Sob Story: Inexplicable Crying on Otherwise Happy Weekends

Things that don’t normally upset me incite tears on weekend afternoons after we’ve been out to brunch. I can’t believe I wrote that bizarre sentence. Nor can I believe this crazy thing that’s happening to me. It’s happened four or five times in the last couple months.

These weekend days always start out great. We have brunch, go for a walk or even run errands. Not until we get home in the late afternoon do I break down. I don’t even feel sad before it happens. I just start crying.

My favorite example is my overzealous reaction to Sunset magazine’s “green” issue. It, and every other magazine’s “green” issue, advocates buying new things to do your part to take care of the environment. There’s no acknowledgment of the waste in producing the product and replacing a current, often still usable, item. I’m frequently bothered by this, but my reaction has always been reasonable.

I didn’t hold back that day. I cried, ranted and raved, and cried some more. The sobbing didn’t last long, but I recognized from the start how ridiculous it was. I was crying over how commercial operations encourage people to buy things. There was no underlying theme — believe me, I tried to find one.

Tears I’ve shed on other weekend days range from absurd to genuine grief about having migraine and chronic daily headache. The weird thing is I don’t cry in grief any other time. Maybe when the pain is horrible and won’t relent, but even then it is rare.

A summary of the weirdness:

  • The tears are brief and can be interrupted fairly quickly
  • I’m fully aware of the absurdity of some things I cry about
  • I have only cried inexplicably on days we’ve had brunch
  • It always happens in the afternoon
  • I don’t feel sad on the days I cry
  • I don’t cry on weekdays
  • I don’t think I’m depressed in general

I try not to make correlations without sufficient facts, but I can’t ignore that this only occurs on weekends. The only explanation I’ve come up with is a blood sugar crash after brunch. I’ve had sweet, carbohydrate-heavy breakfasts on the days I’ve cried. How is that different than days I don’t eat until 4 p.m. or eat cookies for breakfast (neither of which is uncommon)?

Any suggestions on causes or solutions for my bizarre problem?

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The Comfort of Casseroles and Home Cooking

It’s my first day blogging in a month and I’m obsessed with finding casserole and other Midwestern home cooking recipes. I haven’t written a new post in weeks (I scheduled them all before my vacation) and have to respond to tons of comments. But I need to make the perfect beef mac and cheese to be ready to tackle my life.

Yes, I know this directly conflicts with the drastic migraine/headache trigger elimination diet I described Thursday. As many times in a day I decide to eat only rice, chicken and lettuce for a few days, I dismiss the crazy idea.

Today’s Googling is part of my long-time preoccupation with finding easy meals that are won’t clog our arteries and are free of additives and other triggers. Vegetables would be a good addition too. Maybe you can benefit from my obsession.

The culprit, beef and cheese macaroni, doesn’t have veggies, but sometimes simple comfort food is the best. As long as I substitute regular cheddar for American, I can justify making this at least once. Right?

From mac and cheese, I moved onto casseroles and other comfort food. Only a couple caught my eye. Do you have any favorites?

When I’m slightly more ambitious, I cook from The Big Book of Casseroles or Moosewood Simple Suppers. I modify Moosewood a lot to fit my diet, but the basic recipes are really good.

Then I got caught up in grilled cheese. The best part is that making it on the George Foreman grill drastically reduces the need for patience.

What are your favorite easy recipes for fall?