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Being a Human Guinea Pig and Digging into Clinical Research: Food and Histamine, Mast Cells and Migraine

The treatment approach/information gathering technique I describe below is highly unconventional, but the discoveries it led to were invaluable. I do not recommend that anyone try what I’ve done. If you absolutely have to, only do so under the guidance of a medical professional and a dietician. 

Two years ago I wrote about the “extreme migraine diet” I was embarking on, which eliminated tyramine and tannins. Given the increasingly drastic dietary changes I’ve undertaken in the last nine months, what I thought of as extreme two years ago now looks like a delicious smorgasbord.

Last I told you, I was trying to reintroduce foods to correct the malnutrition caused by an unwise elimination diet. Everything I tried, even the most benign foods, triggered migraines. So I stopped eating.

My Last Couple Months: Tolerex, Food Reintroduction, Migraine Discoveries

Under the guidance of a dietician, I consumed nothing but water and an elemental formula called Tolerex for two weeks, beginning the weekend before Thanksgiving. (Elemental formulas are used in feeding tubes. Tolerex is a basic formula that’s well-tolerated by many people and contains complete basic nutrition, but is only a sustainable diet for people with GI disorders that inhibit processing certain nutrients. Its flavor is mostly neutral unless I have a migraine, then the taste and texture nearly make me gag. Also, migraine or not, if the Tolerex is not at the exact right temperature, it tastes like the smell of wet dog.)

The first week on only Tolerex, I still had constant head pain, but had only two migraines, both of which had obvious triggers (weather for one, massage for the other). Let me repeat that, I, the woman who has had one migraine run into another every day for at least a decade, had just TWO distinct migraines in a single week. Fatigue? Gone. Brain fog? Gone. If I believed in miracles, this would qualify as one.

After two weeks of Tolerex, I began reintroducing food. Once again, everything triggered a migraine. A quarter cup of red lentils, a quarter of a matzo, five Brussels sprouts, oat bran, a quarter cup of brown lentils, a quarter cup of juiced beet greens…. Frustrating for sure, but I also learned a ton about my migraines in that period.

  • I know what it feels like to not have a migraine. (How sad it is that I had such severe, daily migraines for so long that I had forgotten what it was like to not have one.)
  • I know what it feels like to go through the four distinct stages of a migraine attack.
  • I identified three different types of migraine onset: one builds over a few hours, slowly adding new symptoms as it intensifies; one is immediate with all the symptoms all at once; one starts with killer pain, then adds brain fog and fatigue.
  • Tooth sensitivity is my most consistent prodrome symptom and it’s very reliable — that’s partly because 90% of the time it’s the earliest symptom I have and partly because my teeth are only sensitive during a migraine.
  • Triptans work for me. They’ve always been hit or miss — usually miss — because identifying when a migraine was coming on was so difficult that I couldn’t take triptans early enough for them to be effective. Now I take a triptan as soon as I notice symptoms and it’s like a freeze frame: the symptoms stop right where they are and stay that way for anywhere from a few hours to the rest of the day.
  • I’ve confirmed that the brain fog and fatigue are definitely tied to migraines. I’d long suspected that, but sometimes wondered if a different, undiagnosed illness was really the culprit. Now I’m 100% sure that my brain fog and fatigue are due to migraine.

These are all great discoveries, but there’s still the glaring issue of food triggering migraines. It’s not just certain foods that are the issue, but the very act of eating nearly anything sets a migraine in motion. At least I think I’ve figured out why and it may be the most exciting discovery I’ve ever made.

Histamine & a Bit About Mast Cells

It all comes down to histamine. Over the last couple of years, medication and diet have established that histamine is a major migraine trigger for me. Clinical evidence as far back as the early 80s supports this notion, with research showing migraineurs have increased levels of histamine in their blood and in studying the role of antihistamines in migraine prevention. More recently, the role of mast cell degranulation (which releases histamine, among other things) in triggering migraines has come to light and is a topic of increasing research interest. (You can learn more about all this in Mast Cell Degranulation Activates a Pain Pathway Underlying Migraine Headache or, the more accessible Hunting for Cells That Trigger Migraine from the National Headache Foundation’s newsletter.)

How is this connected to eating? Certain foods contain histamine and others are considered histamine liberators. Furthermore, histamine is released as part of the digestion process whenever anyone eats anything. And this, I believe, is the crux of the problem for me. This normal histamine release is somehow too much for body and it sets a migraine in motion.

Fortunately, there are some ways to work around this problem. I can avoid all foods that contain histamine or are histamine liberators, juicing all my fruits and vegetables so they are easy to digest (this is a hypothesis I’m in the process of testing), and take a supplement called DAO before eating (more on that in a minute). I can also take medications that are considered mast cell stabilizers. There are a variety of possible medications, some of which are prescribed for migraine, like amitriptyline (Elavil), prochlorperazine (Compazine), and promethazine (Phenergan). If none of those work, there’s another long list of possible medications and even some dietary supplements that are considered mast cell stabilizers.

Diamine Oxidase (DAO)

Of all these possibilities, taking a DAO, diamine oxidase, supplement is the most promising right now. DAO is an enzyme that processes the histamine that’s released as part of digestion. All humans have DAO, but some people produce insufficient amounts. One researcher claims that DAO deficiency is common migraineurs. My genetic testing indicates that I’m likely one of those who do not produce enough DAO.

By taking the supplement, which is made from pigs’ DAO, before I eat, I’m able to eat more foods without getting a migraine. A study presented at the World Congress of Neurology last September examined the use of DAO as a migraine preventive. The main finding was that DAO could shorten the duration of migraine attacks, but there was some indication that it could also reduce the frequency of migraines, though intensity appeared unchanged. Participants who received DAO (rather than the placebo) significantly reduced their use of triptans. It was a small study and early research, but is definitely intriguing.

Some people may be able to take DAO and eat whatever they want without adverse effects. It doesn’t look like I’ll be one of them. I’m still sorting out exactly what foods I can eat without triggering a migraine when I take DAO. I will likely still have to avoid foods that contain or liberate histamine, though some people with histamine issues are able to reintroduce “forbidden” foods after avoiding them for a while.

Unfortunately, as I test more foods, the migraine triggers get murkier. Sometimes I even  wonder if DAO itself is a trigger (although, the “experiments” I’ve done the last two days indicate that the trigger may actually be a different food chemical that’s unrelated to histamine. I clearly still have a lot to sort out.).

More on Mast Cells & What’s Ahead

Those are the questions I’m juggling in the short-term. In the long-term, I’m exploring the possibility that I have a mast cell disorder that underlies my migraine frequency. As I mentioned above, recent research indicates that mast cells play a role in migraine. Mast cells are normal, healthy cells that everyone has. They defend against pathogens and heal wounds, but they also are intimately involved in allergies and anaphylaxis. One of their functions is to release histamine when the body needs it. Some people have too many mast cells (mastocytocis), while others seem to have “twitchy” mast cells that degranulate too readily. Either case causes an excessive histamine release in the body.

Mast cells are yet another medical area in which there isn’t a lot of research (of course I wouldn’t wind up with a well-understood disorder). Because mast cells are such a major player in allergy and immunology, that’s what most of the research focuses on. The good news is that I have an appointment with an Arizona-based mast cell specialist at the end of the month. The bad news is I have to convince him to take my case seriously even though I don’t exhibit typical allergy-like symptoms. He’ll either find me an interesting anomaly or will think I’m wasting his time.

Next week, I see my headache specialist, an appointment I’m both eager and nervous about. He’s shown nothing but respect for me and has always believed and supported me in the past. Still, telling a renowned migraine researcher that my primary trigger is eating is intimidating. This may be the time he laughs me out of the office. Or he could go to bat for me with the mast cell specialist or could connect me with migraine researchers interested in histamine and mast cells.

Phew! I’m Almost Finished

Thanks for sticking with me through this incredibly long post. Every time I find a treatment that seems promising for me personally, I first wonder if it will help my niece who has chronic migraine, then I wonder if it will help any readers of The Daily Headache. I want very much for the connections and discoveries I’ve just told you about to help at least one other person sort out their migraine mysteries. What I’ve learned in the last couple years (and especially the last couple months) really feels like a step toward that. I’ll keep you posted.

P.S. I’m not sure if I’ve turned a corner with the dizziness that’s kept me off the computer for the last six weeks or if today is a fluke. It’s much less noticable when my medication can be digested along with solid food, rather than Tolerex alone, but I’m still not eating solid foods every day. I hope I’m back – I’ve missed writing so much.

P.P.S. Please don’t be worried about my current nutrition. I had my September blood work re-done a month after starting Tolerex and it’s back to being perfect. Tolerex is not a long-term solution, but it’s way, way more nutritious that what I’ve eaten in most of the last year.

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Blood Work Confirms the Stupidity of Months of Malnutrition

Eight vials of blood, one fainting spell, and three pages of lab results later, and I’m seeing just how much harm my months of malnutrition have caused. Year after year, my blood work is unfailing perfect other than showing slightly elevated cholesterol. I didn’t really think my “diet” would throw things too far out of whack. Boy, was I mistaken.

After five months of living on chicken, white rice, and gluten-free oats, and four months of compromised nutrition before that, my liver enzymes and thyroid hormones are elevated, my blood sugar is low, my folic acid is deficient, my cholesterol is through the roof, and I have a host of other alarmingly elevated or depleted levels. None of the damage is permanent and most of it can be reversed through diet, but the results are alarming nonetheless.

I knew I was taking a risk, but I didn’t expect to see evidence of it so quickly. I should be grateful that my body recognized it was starving and is working to protect itself, but mostly I’m angry at myself for thinking that malnutrition was a wise choice even though it reduced the frequency and severity of my migraines.

While going back to a well-rounded diet would be the quickest route to getting my body back on track nutritionally, I’m waiting until I get guidance from the dietician (tomorrow!) to figure out how to reintroduce foods in a way that tests whether certain food chemicals are triggers. Until then, I’m eating three servings of nutrient-dense foods each day. My brain fog is much better and my fatigue has changed from a body-filled-with-sandbags sensation to more of an achy feeling. The migraines haven’t drastically increased in severity or frequency so far.

Most notably, I’m not longer thinking of every food as a potential migraine trigger, but as an unknown. I’ve also recognized that my migraine symptoms vary throughout the day whether or not I eat a trigger food, so I’m not scrutinizing every symptom and connecting it to foods unless the reaction is obvious. These may seem like imperceptible shifts, but they allow me to feel freer and less afraid of food.

It’s astonishing to think I went from not believing food triggered my migraines to being so suspicious of food that I starved myself of nutrition to feel better. As if I needed more proof that the desperation of intractable chronic migraine messes with the mind.

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“Congratulations,” a Dietary Wake-Up Call

“Congratulations.” Of all the responses I anticipated before publishing An Almost Normal Life Thanks to an Extremely Unhealthful “Diet,” being applauded never occurred to me. When that congratulatory email arrived in my inbox, I was floored. Having had a prior email correspondence with the sender, I knew they were coming from a place of desperation. To them, any sort of improvement, even at the cost of malnutrition, was a tremendous gain. To me, it was reminiscent of people who made jealous remarks about my weight loss when I was gaunt from such severe nausea that I could barely eat. In both cases, the outcome—whether fewer migraines or (unwanted, unnecessary) weight loss—the price is too high.

Serendipitously, I saw my therapist/naturopath the afternoon I received that congratulatory message. She listened as I expressed my dismay that my malnutrition could be a reason to celebrate. She let me rant about how frustrating it is to track down food triggers when Every. Single. Thing. I eat seems to be a trigger. She handed me tissues when I cried about how much I miss food, baking and cooking, and sharing meals with my loved ones. She recommended a bunch of lab tests to check the nutrient levels in my blood. She got the ball rolling on metabolic testing. She explained the hormonal impact of starving my body.

Starving. That was the first time anyone had spoken that word aloud. I’m getting enough calories, so I’m not technically starving, but I’m getting about as much nutrition as I would drinking soda all day. I am starving myself nutritionally so I can pretend to live an almost normal life. The body needs high-quality fuel to run efficiently, and I’ve been running on fumes for months. It’s no wonder I’m in a constant brain fog and my limbs are so heavy it feels like my bones have been replaced with sandbags.

“Congratulations” was intended as a show of support and, in a roundabout way, that’s exactly what it was. It was a wake-up call—no, more like a slap in the face. Starving myself of nutrition relieves the migraine symptoms temporarily, it does not eliminate them or their cause, and it has potential for long-term harm. These months of operating at 50% much of the time have been amazing, but I will no longer trade my overall health for temporary relief of migraine symptoms.

Please cross your fingers, send good vibes, pray, or whatever it is you do that I’ve gathered enough information from this absurd “diet” that my dietician, naturopath, and doctors can investigate some previously unexamined issues, like food chemical intolerances, enzyme deficiencies, and mast cell and metabolic disorders. My greatest hope is that I will not only find some answers for myself, but that my discoveries will help others with headache disorders find the missing pieces of their treatment puzzles.

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An Almost Normal Life Thanks to an Extremely Unhealthful “Diet”

In April, my migraine frequency and severity finally decreased enough that I began to feel like I had a normal life again for the first time in more than a decade. The pieces have been falling into place for a while: the move to Phoenix, wearing TheraSpecs, starting a high dose of magnesium, taking cyproheptadine, attempting a low-histamine and low-salicylate diet, starting Ritalin. I’ve been feeling better than at my worst for a while now, but it wasn’t until April that I began to feel like I could have a consistently almost normal life. The change? I took my diet down to nothing but gluten-free oats, chicken breast cooked in safflower oil, and unenriched white rice. I felt even better after cutting out the chicken and safflower oil a few weeks ago.

I haven’t written about this “diet” — what I eat isn’t healthful enough to constitute an actual diet so I have to use quotation marks — because it is unhealthful and I do not recommend it to anyone. It is an untenable solution and I worry about my nutrition all the time. Yet, I can’t let go of the life that eating this way has given me.

On this limited “diet,” I wake up each morning and know I can probably do what I have planned, rather than knowing I’ll be lucky to mark two items off my list. It enables me to have engaged and interesting conversations with my husband, make plans with friends actually be able to follow through, write regularly for Migraine.com and The Daily Headache, make meaningful decisions for TheraSpecs, exercise most days, go to yoga classes, attend therapy appointments…. In other words, subsisting on oats and rice is the difference between living a fuller life than I have in more than a decade and spending most of my time on the couch, in the unpredictable throes of a migraine.

I know I need nutrition and I don’t plan to eat this way indefinitely. It has yielded some important clues that I hope will further my treatment — I have an appointment with a dietician experienced in food sensitivities in a couple weeks and my naturopath is going to test me for metabolic disorders. While waiting for those appointments and results, I’m slowly testing high nutrition foods to see how I react. I do so with great caution. It’s hard to willingly return to the migraine cage I’ve lived in for so long.

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Learning the Value of Nutrition (and Increasing My Head Pain in the Process)

Though last month my head felt better than in decades, my diet’s lack of nutrition nagged at me. I was afraid that living on chicken, rice, rutabaga, and chayote squash would ultimately harm my health, thus defeating the purpose. Trying to find some balance, I started adding foods back in.

The Failsafe diet is already tremendously restrictive and I had restricted my intake even further to avoid:

  • Sulfurous vegetables, like cabbage, Brussels sprouts, and anything in the allium family. These may be a problem for people who are ultra-sensitive to sulfites, a known migraine trigger for some.
  • Nuts and legumes because I’ve been pretty sure in the past they were triggers.
  • Beef, lamb, dairy, and eggs, all of which I had positive antibodies for in a 2005 food allergy test (ELISA). (Tangent: Science-Based Medicine has a great review of the validity of food allergy tests.)
  • Gluten, the food component currently in vogue as the root of all evil.

So far I’ve added cabbage, Brussels sprouts, lentils, lima beans, raw cashews, and beef back in, plus I started using enriched rice. What an amazing amount of diversity this seems to provide! Unfortunately, I feel like I’ve been in a downward spiral the last couple weeks, with increasing migraine frequency and severity, more severe daily headaches, and significantly more fatigue.

The slide has been gradual, without any obvious migraine attacks or increased head pain following certain foods (except for when I tested milk and had the worst migraine I’ve had in six months), so I’m having trouble pinpointing the source. Apparently, some people on the Failsafe diet have trouble with folate, which is added to enriched rice. I eat rice throughout the day every day, so that could explain why I can’t determine the cause of my worsening symptoms. I’m going to switch back to regular white rice this week in an attempt to recapture some of the glory days.

Teasing out the minute dietary changes that may or may not have an impact on how I feel day to day is frustrating and majorly discouraging. I feel like I have to choose between adequate nutrition and having head pain and fatigue that significantly limit my ability to function. I know shorting my nutrition isn’t a wise strategy, but those days of minimal head pain were as glorious as a sunny day in Seattle. I’ll do almost anything to get them back.