Tag: histamine

Diet, Treatment, Triggers

DAO and Diet: Does One Work Without the Other?

Kerrie Smyres

The short answer is maybe. The options in order of efficacy: 1. DAO and diet combined, 2. Diet alone, 3. DAO alone. There’s a very good chance the enzyme won’t be effective unless you also restrict your diet.

For me, diamine oxidase (DAO) has been very helpful only in conjunction with a low-histamine diet. From my experience trying to reintroduce foods, I am now positive that DAO alone would have done nothing for me. My dietician confirmed that. On our last call, she said “Even with DAO, you just can’t eat foods that are high in histamine. You just can’t.” Don’t panic, she was talking about me specifically, not everyone, and I’m an extreme case. (The link above will take you to a comprehensive Q & A on histamine intolerance and DAO. This one takes you to everything I’ve written about DAO.)

I’ve heard of a few people benefiting from DAO alone, but almost everyone who finds relief is also on a low-histamine diet. I know it’s a downer. Restricted diets can be a burden, especially at the beginning. It should tell you something that despite being frustrated and annoyed with my diet, I’m still sticking to it. Having times without migraine is just too precious and that only happens for me on the diet and taking DAO.

A few readers have told me DAO has been a magic bullet for them, but most who try it without diet modifications have no success or inconsistent results. Even with the diet and DAO, you may not get relief. If histamine isn’t a major trigger that sets migraine off in your body or gives you headaches, avoiding histamine or taking an enzyme that processes it won’t be of any use. Unfortunately, there’s no blood test or other quick, definitive way to figure out if this is the case for you.

I wish DAO were an easy answer and that the supplement could take the place of a restricted diet. Unfortunately, that’s just not the case for most people. And, unfortunately, it may not work at all for you — that’s just the nature of headache and migraine treatments.

Looking to buy DAO? You can get Histamine Block and Histame from Amazon. (I’m an Amazon affiliate, so I’ll get a small portion of the sales if you purchase through one of those links. I have no relationship, financial or otherwise, with any company that manufactures or sells DAO.)

Diet, Patient Education, Treatment, Triggers

Testing if Your DAO Level is Low

Kerrie Smyres

Yes, there’s a test that measures diamine oxidase (DAO) levels in the blood. No, it’s probably not worth your time or money to get it done. (Wondering what DAO is? Start reading here and follow the links at the bottom of that post for more information.)

There are two issues. The first is there’s no well-established range of DAO levels. There’s speculation and you’ll find ranges listed, but they aren’t yet backed by solid science. Also, it’s not known whether the amount of DAO in your blood is indicative of how much is in your gut, which is where it really matters.

Genetic testing can show if you have mutations in the genes related to DAO production, but not how much you actually produce. While the test confirmed that I probably make insufficient amounts of DAO, dietary research, an elimination diet and testing DAO supplements were more informative.

The best way to find out if you’re low in DAO is to try taking the supplement. You can get small a bottle of the highest strength DAO for about $30. If you’re going for a high dose, use Histamine Block rather than Histame. (The Amazon link defaults to the more expensive 60 capsule bottle. Click on “30 Easy-To-Swallow Vegetarian Capsules” in the box below the “in stock” notice to choose the less expensive bottle).

It took about a month of playing with the amount of DAO I took and how long before meals to take it before I hit on the right set up for me. The label recommends taking two no more than 15 minutes before every meal. I’ve found each capsule covers about 400 calories, though I take more if I’m eating a high-histamine food, like fish. I currently take it about 8 minutes before eating (or even drinking coffee or herbal tea) and am sure to finish eating within 45 minutes. As you’ve read, the change was drastic once I hit on the right combination.

This was while eating a low-histamine diet, which I recommend trying. Even if you don’t, read the list of high-histamine foods and take extra DAO when you eat them. (Some of those foods are also high in tyramine, which has long thought to be a migraine trigger. DAO does not help process tyramine and there is no digestive enzyme that claims to.)

The capsules are expensive (about $1 each), so I initially felt a lot of pressure to take no more than I absolutely needed. For the sake of dietary variety, I’ve relaxed a bit and now err on the side of too much with foods I’m uncertain about. Other than pocketbook pain, I have no noticeable side effects. I thought heartburn was an issue for a while, but that has resolved (it was likely due to reintroducing fat after going so many months on a very low fat diet). I’ve been reassured that DAO is safe and that any that’s unused gets flushed right out. That’s why you have to take it before every time you eat — it doesn’t stick around.

I know many of you are hoping that DAO will help you as much as it has me. If you do decide to try it, play around with dosing and when you take it. If you get any relief from it, it might be another addition to your treatment plan. Every little bit adds up.

Still have questions? Please ask them in the comments or email me at kerrie[at]thedailyheadache[dot]com and I’ll try to answer them.

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Diet, Meds & Supplements, Treatment, Triggers

Diamine Oxidase (DAO) is Why I’m Doing Better

Kerrie Smyres

The Amazing Feat of a Normal Life prompted a lot of questions about why I’m feeling so much better. It’s still the digestive enzyme, diamine oxidase (DAO), that I started in January. (To learn more, read The Post I Never Thought I’d Get to Write and follow the links at the end for more details. If you want to try DAO yourself, you can get it through Amazon. Even though it’s called Histamine Block, it isn’t an antihistamine and doesn’t block histamine.)

I continue to follow a restricted diet, though that’s more about wanting to reintroduce foods slowly and methodically rather than any particular food being a problem. As long as I take DAO, I’m doing great with nearly every food I try (even dairy and wheat). I’ve even tried a few high-histamine foods (with a little extra DAO) and have done fine.

The other dietary change is that I’m eating most foods on a rotating schedule, leaving two or three days between each time I eat a particular food. I began this when I developed an intolerance to coconut after eating it multiple times a day for months without a problem. This has been a very effective way to vary my diet.

It’s a slow process, but I’m getting almost complete nutrition from the foods I eat (I’m still a little low on calcium). I eat mostly vegetables, though I have salmon a couple times a week and am currently testing eggs and milk.

That’s it. I’m past the three-month placebo window and continue to feel better than I ever thought possible. I know DAO is an unconventional migraine treatment. I know the science behind it is weak. I also know it’s working better for me than anything else I’ve ever tried.

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Chronic Migraine, Coping, Diet

Finding an Effective Migraine Treatment: An Emotional Whirlwind

Kerrie Smyres
Hart uses this picture of me in presentations to show his motivation for starting TheraSpecs.
Hart uses this old picture of me in presentations to show his motivation for starting TheraSpecs.

Despite frequently wondering what life would be like if I ever found an effective migraine treatment, I wasn’t prepared for the emotional whirlwind of it.

In the first couple weeks, elation and nervousness dominated my thoughts. Being able to do the normal, mundane things of life felt incredible, but I was also overwhelmed. I kept wondering what life would look like without constant migraines. What would I do with my days? What would work be like? Would I be able to resume friendships that have been on hold? How would Hart and I relate to each other? Would I still want to write about migraine? Nothing bad or worrisome was happening, but I couldn’t wrap my mind around how my day-to-day life would change.

After those first overwhelming, uncertainty-filled weeks, my thoughts mostly settled down, but I experienced four weeks of very strange anxiety. You know that fluttery nervous feeling you get in your stomach? I’d get that for a few seconds with every thought. And I mean EVERY thought, from “I need to downshift” while driving and “So that’s how they’re related” while watching a movie. My reaction to thoughts that actually provoked anxiety was exactly the same. The flutter happened less and less frequently over the four weeks until it disappeared.

Those are the stressful and strange reactions, but I’ve mostly been amazed by two things: how easy everything is and how present I am.

Showering no longer brings imminent collapse. The dining chairs and table are no longer too hard to sit at for meals. Making phone calls is no longer beyond my ability. Going to the grocery store is no longer the sole activity I can do in a day. Such simple things have taken maximum effort for the last 10 years. Without having to psyche myself up before every chore and not being exhausted by minimal tasks, everything seems unbelievably easy. This extends to writing, too — without constant brain fog, writing is so much easier. I’ve even been able to wade through tons of medical journal articles and understand them without trouble, then synthesize the findings into my own words.

And I no longer feel constantly separated from the world, unable to connect with other people or be truly present at any moment. My conversations are more interesting, being with friends is more fun, work doesn’t feel like work, my time with Hart is fantastic. I’ve always struggled to put that sense of disconnection into words — it’s like being at the bottom of a well or underwater. One blog reader said it was like being wrapped in cotton. Whatever the best metaphor is, the sensation of being separate, apart or disengaged is one that many people with chronic migraine seem to share. That was my normal for so long and, while I knew I felt that way, I didn’t know just how removed I was. I’ve been trying to practice mindfulness and presence the last six years without actually having the ability to be fully present.

I’m adjusting to this new normal. It’s exciting and nerve-wracking, familiar and strange. There’s no guarantee I will continue to feel this good indefinitely, so I’m trying to enjoy this time without getting too far ahead of myself. Mostly I’m letting my days unfold organically and approaching all these changes with wonder and awe.

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Diet, Meds & Supplements, Treatment, Triggers

Mast Cell Disorders, DAO & Food Trigger Testing

Kerrie Smyres

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.

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