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.