Community, Patient Education

Migraine Information and Advocacy Video Series: Call for Participants

A national news anchor is putting together a five-part video series on migraine for a major health website and is looking for people who have migraine to participate in several segments. In addition to talking about basic migraine information and treatment, the series will also share what migraine is really like and how it affects our lives (and our loved ones). They want to hear the stories of people with a broad range of migraine experience (chronic or episodic) and of different ages, genders, and life circumstances. Travel may be required, but not necessarily.

I’ll be participating and would love for you to join me! If you’re interested, please fill out the form at this link and submit it by midnight Pacific time on Sunday, March 12. The questions are to help the producer find participants best suited to different videos and figure out where filming will take place. I will forward the information onto to her and she will contact you directly if you fit what they’re looking for.

Speaking with the producer has me excited about the project. They are genuinely interested in educating people about migraine and are earnest about these videos being used for advocacy. They also clearly want to get it “right”—to portray migraine and its impact accurately. I believe the videos will a great tool for spreading the message about migraine.

Coping, Patient Education

Sarah Hackley: Staying in Tune with the Body When Life Gets Hectic

Happiness with Migraines by Sarah HackleyIn this guest post, Sarah Hackley shares tips for keeping migraine attacks at bay by staying in tune with your body. Sarah is the author of Finding Happiness with Migraines: A Do It Yourself Guide. Win a free copy of her book by leaving a comment on this post or emailing kerrie[at]thedailyheadache[dot]com by 11:59 p.m. Pacific on Friday, September 23. (The contest has ended. Congratulations to Brian for winning the book!) 

Life gets hectic, and there are times when it becomes downright overwhelming. This is particularly true for adult women, who too often feel the pressure to be superwoman. Unfortunately, it is these same women who make up a significant portion of the migraineur demographic, and it is these overwhelming times that are most likely to push us into an escalating series of migraine attacks. One way to help combat this cycle is to stay in tune with our bodies.

What does that mean, exactly? What does it look like?

Being in tune with our bodies is largely about self-trust. Trusting our body to tell us what it needs, and trusting ourselves to hear those messages, understand them, and respond to them. Our bodies will always do their jobs. They will send those messages. That’s what bodies do. It is up to our minds to do the rest.

Cultivating the body awareness needed to respond appropriately to our bodies takes time and attention, but it is something we can all do using a variety of methods, exercises, and intuitions. One great exercise for beginners involves a kind of mindful meditation known as a body scan.

For the body scan, position yourself flat on your back, either on the floor, your bed, or a mat – whatever feels best and most natural to you. Then, gently close your eyes and breathe. Once you are present in the moment, move your attention to your feet, noticing any sensations in the toes, the heels, the soles, the ankles, and the tops of your feet. Invite curiosity to the practice, as if you are paying attention to these sensations for the first time.

Once you are sure you have experienced each sensation in your feet, move your attentions slowly up to your calves, attending to each part and sensation in the same manner. From there, move to your thighs, then your hips, then your torso, then your arms, and finally your neck and head. This exercise can take anywhere from three minutes to half-an-hour, depending on your personal preferences. When you are finished scanning, remain still and return to your breath. Finally, open your eyes, and slowly bring yourself to a sitting position.

Regular practice of this technique will strengthen the bond between your mind and your body, thereby ensuring you notice the body’s quieter messages. This gives you the tools necessary to act to protect yourself before major problems arise. Other ways to keep in tune with the body throughout the day:

  • Be mindful of any aches and pains that crop up and try to ease them with self-message or gentle stretching.
  • Watch your posture, and realign when you start to slump or hurt.
  • Pay attention to your energy levels, especially peaks and slumps, to see if you can uncover a daily cycle to work within (also ask yourself what foods or activities, if anything, may be contributing to that cycle).
  • Go to bed when you are tired and eat when you are hungry, without regard for the clock.

Deep body awareness takes time, but tuning in at any level will dramatically improve the connection between mind and body, which will help prevent small problems from becoming large ones. This will also help you receive your body’s subtle clues that a migraine attack is coming on, hopefully well before any of the overt signals make themselves known. And advance notice always makes prevention and treatment easier – especially in the midst of hectic times.   

For additional self-care tips on how to live well – and joyfully – with migraine, please check out Finding Happiness with Migraines: A Do It Yourself Guide by Absolute Love Publishing.

To keep up with and reach out to Sarah directly, here’s where to find her on social media:

Win a free copy of Sarah’s book by leaving a comment on this post or emailing kerrie[at]thedailyheadache[dot]com by 11:59 p.m. Pacific on Friday, September 23.(The contest has ended. Congratulations to Brian for winning the book!)

News & Research, Patient Education

Migraine and Stroke, Heart Disease: Understanding the Risks

Learning that research has found connections between migraine and stroke and heart disease can be chilling. Fortunately, the news is not as bad as it might first appear. I spoke with headache specialist Gretchen Tietjen, M.D., about an article on the connection between migraine and an increased risk of stroke and cardiovascular disease that she wrote for the American Migraine Foundation. “From a patient’s perspective, this information is frightening,” I told her (because I have no poker face, even on the telephone). Dr. Tietjen soothed my worries tremendously by putting the information into perspective.

“It can be very scary when you read things like this,” Dr. Tietjen said. “Study after study shows this little bit of increase.” However, the risk is very small. The most important takeaway is that patients should keep migraine in mind as part of their overall risk for stroke and heart disease. If you have migraine and are at increased risk of stroke or heart disease, it’s extra important to be aware of and manage those risk factors.

Migraine Increases the Risk of Stroke and Cardiovascular Diesease (But Only a Little Bit)

Yes, migraine does increase the risk of stroke, particularly for women who have migraine with aura. But the risk is very, very small. Less than 1% of all strokes in women have any connection to migraine. And the presence of a connection is not proof of a causal relationship—that is, just because the two are linked doesn’t mean that migraine causes stroke.

The article reports that a recent study found “that migraine increases the risk of stroke, coronary events, and related death by about 50%.” At first glance, that sounds terrifying, but Dr. Tietjen’s clarification was soothing. She said, “This sounds worrisome but to put this in perspective only 1% of the total population in the study had a cardiovascular event over the 20 years of follow-up. The take home message is that having migraine does not mean you will have heart disease or a stroke, only that it appears to slightly increase the risk.”

Risk Factors For Stroke and Heart Disease

Dr. Tietjen highlighted risk factors like smoking, high blood pressure, high cholesterol, and diabetes. She said that in people with migraine, these factors have an additive effect—the combination of more than one risk factor is worse than any one by itself. If you have any of these risk factors in addition to migraine, quitting smoking, lowering your blood pressure and/or cholesterol, or getting your diabetes under control could lower your risk of heart disease substantially. Smoking is the risk factor that stands out the most to Dr. Tietjen. Studies of migraine and smoking have shown that the combination of the two increases your stroke and heart disease risk more than either one on it’s own.

Learn More About Migraine, Stroke and Heart Disease

Dr. Tietjen’s article, Migraine, Stroke and Heart Disease has in-depth information on who is at increased risk of stroke, differentiating between symptoms of migraine and stroke, the physiological links between migraine and stroke, and ways to lower your risk. As you read the article, keep in mind that the absolute risk is small and that you can modify your risk factors for stroke and heart disease. And make a list of any questions you may have so you can ask your doctor at your next appointment.

Patient Education

Headache and Migraine Patient Conference June 29!

The second annual headache and migraine patient conference will be June 29, 2014 in Los Angeles. Last year’s conference was really informative and, while my migraine was too severe for me to be social, I still learned a ton.

Multiple sessions will be held concurrently, so you can choose what topics you want to learn about, including managing cluster headache, brain changes during migraine, sex differences in migraine treatment, and complementary and alternative therapies. There will also be a session for loved ones to talk about the challenges they face as caregivers. Some top headache specialists will be presenting, including Dr. Andrew Charles (UCLA), Dr. Rob Cowan (Stanford) and Dr. Peter Goadsby (UCSF).

Get details and register. Scholarships of up to $500 will be offered for travel expenses. The scholarship application deadline is Friday, May 30. Help for Headaches has scholarship details.

I’m still not sure if I’ll make it this year, but leave a comment if you’re going and we can be sure to meet up if I do!

Diet, Patient Education, Treatment, Triggers

Testing if Your DAO Level is Low

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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