Chronic Migraine, Diet, Reader Stories, Treatment, Triggers

The Post I Never Thought I’d Get to Write

Not only do I think I’ve figured out my biggest migraine trigger, I have a way to treat it. Even better, the treatment is simple and straightforward and feels sustainable for the long-term. As an added bonus, it lets me eat peanut butter.

Here’s the gist, which may have gotten lost in the epically long post about mast cells, histamine and diamine oxidase a couple weeks ago:

  1. Whenever a person eats anything, histamine is released as part of the digestive process.
  2. An enzyme called diamine oxidase (DAO) processes the released histamine.
  3. I do not produce enough DAO (nor do many other migraineurs, according to at least one researcher).
  4. Without enough DAO, I can’t fully process normal amounts of histamine.
  5. All that unprocessed histamine is a major migraine trigger for me. (Studies suggest histamine could be a trigger for some percentage of people with migraine.)
  6. By taking a DAO supplement 10 minutes before I eat, I’ve been able to eat without getting a migraine.
  7. Histamine Block, the supplement I started this week, is much more potent and more effective than the one I was experimenting with a couple weeks ago, hence the drastic improvement. [Tons of people have asked where to buy the supplement. The name is Histamine Block and it’s available on Amazon. Click those words and you’ll get right to it.]

Despite still having constant head pain, it is sometimes as low as a level 1 and I haven’t had a real migraine since last Friday. I literally cannot remember the last time I felt as good as I have in this week.

Unsurprisingly, it has been a tremendously exciting and weird week. Multiple times, I’ve been driving with the windows down, dancing and singing at the top of my lungs, the stereo blaring so I don’t have to hear myself sing — and crying. I just can’t get over how normal life suddenly seems.

I’m so overjoyed and overwhelmed that I can’t make sense of the mass of thoughts jumbled in my mind. Could this treatment — which is so obscure as to be unheard of by the vast majority of headache specialists — really be “it”? Am I embarking on a future without daily debilitating migraine attacks? What does day-to-day life without a constant migraine even look like? Is my greatest wish actually coming true?

1/24/14: I awoke at 5 a.m. worried this post made it sound like I think I’ll never have another migraine, so here’s a clarification. I do not. I even expect they will stay chronic. My greatest wish isn’t to be pain- or migraine-free, but to not have a migraine all. the. time.

Having a migraine triggered every time I ate has probably been the greatest burden of chronic migraine for me. Figuring out something that’s contributing to that one piece of the puzzle — and having any sense of normalcy — is exhilarating.

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Chronic Migraine, Diet, News & Research, Treatment, Triggers

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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Community, Treatment, Triggers

TheraSpecs Featured on Dream Big America, We Need Your Vote TODAY!

After being featured on the national radio show Dream Big America this morning, TheraSpecs is in the running for a Kauffman Foundation grant that will help us get TheraSpecs to more people who need them. We need your vote today! To vote, text DBA to (612) 223-7326 or vote online. You can hear Hart’s short radio segment, read some Q&A about the business, and vote for TheraSpecs on the Dream Big America website.

Voting is only open until 2 p.m. Eastern tomorrow, so please vote now and spread the word! Thank you.

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Chronic Migraine, Coping, Diet, Triggers

I’m Not Giving Up

Thank you for the outpouring of support after my diet update. The comments and my email and Facebook have been overflowing with kindness. Assuming that the concerns of those who have contacted me represent those of many who haven’t spoken up, I want to tell you all that I’m not suicidal and am nowhere close to giving up a search for treatment.

The thought of returning to debilitating migraines again is scary and sorrow-filled. I don’t wanna go back! and I’m kicking and screaming about it, but it’s the only choice right now. Despite a generally positive outlook, sometimes I need to talk about how much it sucks to have chronic migraine. Getting my life back a little bit the last few months has been wonderful. Letting it go again is the last thing I want to do, even if it is the right decision. Not telling you how painful it is would contradict my desire to write honestly about how harrowing chronic illness can be.

Analogies leap through my mind as I try to put this experience into words. The best metaphor I’ve come up with is that of a wild animal in captivity. In my months of malnutrition, I haven’t been roaming my natural habitat freely, but I’ve been in a spacious enclosure that’s built to mimic nature. It’s exposed to the elements and the sunlight is plentiful. I haven’t been on the loose, but I’ve been pretty well off. Expanding my diet means being confined to a small cage enclosed with chain-link fencing. The floor is concrete and there’s no natural light.

More than anything, I want to be free, but the well-designed artificial habitat was exponentially better than a tiny cage. But I know what the sunshine feels like on my face and how the wind feels in my hair. I know firsthand it’s possible to get relief from chronic migraine. There’s no way I’m giving up now.

Chronic Migraine, Diet, Symptoms, Triggers

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.