The Migraine Brain

by Bernstein, Carolyn; McArdle, Elaine

  The bottom line is this—there are treatment options that can help you. If you get cluster headaches, you’re enduring severe pain that you don’t need to live with. You should seek medical guidance to find the best treatment for you.

  Men: Taking Care of Your Health

  “Skipping meals is bad. I did have an episode once where I was traveling to Washington, D.C., and grabbed a donut, and when we got to Washington ten hours later, bang! I had one. The other thing I’ve found very beneficial to me is that when I work out and stay in shape, my frequency is much, much lower. Working out has a very positive effect in terms of preventing migraine and recovering from them.”

  —Robert, 63, retired firefighter and engineer

  In general, women tend to take better care of their health than men, as numerous studies demonstrate. For whatever reason, men are less likely to exercise regularly, eat healthy meals, and keep regular hours. Men aren’t as likely to be attracted to relaxation techniques such as yoga or meditation, and they are more reluctant to seek help with emotional or psychological problems.

  But, as we’ve discussed earlier in The Migraine Brain, taking care of yourself isn’t an option—if you want to feel better. It’s vital. Good health habits are essential to staving off as many migraine attacks as possible. Your health has to be a priority. It’s that simple.

  All migraineurs, men or women, need to create a personalized wellness plan to stay as healthy as possible. You should tailor it to make it as simple and attractive as you can. But you have to follow your plan if you want to reduce the number of migraines you get and how bad they make you feel.

  Many of my male patients ask me what it means about them that they’re the guys who get migraines. Can they still play sports with their friends and go camping, backpacking, rock climbing? What if they get a migraine when out in the mountains? How much does this condition affect their life? The answers really center on their getting a great migraine treatment plan together. Once their migraine plan is in place, their peace of mind increases tremendously—and they don’t live in fear of a sudden migraine interrupting their lives. Depending on your migraine pattern, you may need a preventive therapy of some sort—which may include a preventive drug—to help you avoid as many migraines as possible. And you need a good abortive treatment that is always with you, whether you’re at the office or on a mountain hike. That way, if you’re out in the backcountry and you get a migraine, you use the treatment to stop the migraine from going any further. If that abortive treatment doesn’t help, you’ll need a rescue plan and some supportive friends. That doesn’t mean you’ll have to be airlifted out of the mountains in a helicopter because of a migraine! But it might mean you have to take a painkiller, spend some extra time in your sleeping bag, and cut the mileage on that day’s hike. If you explain what’s going on to your friends, they’ll do their best to help you out. Don’t let migraines cripple your lifestyle—but be smart and prepared to deal with them.

  If you’re on a bunch of medications already—for high cholesterol, daily aspirin to avoid heart problems, and others—and you really don’t want to take any more meds, there are other treatment options. I support your choice on whether to take migraine medication. But make sure you fully understand these medications. See Ch. 9. It may be worth discussing medical options with your doctor before you decide you don’t want to use migraine drugs. And don’t make the mistake of thinking that over-the-counter drugs such as ibuprofen are necessarily better for you than prescription drugs—they can be dangerous (see above). Make sure your doctor knows every drug you are on.

  Your doctor should be involved in helping you explore nondrug treatment options, too. These include biofeedback, ice therapy, nutritional supplement, and others. See Ch. 11.

  One of the most effective things you can do is also the easiest and cheapest, and has many other benefits: taking great care of your health with regular exercise, healthy eating, moderate alcohol consumption, enough restorative sleep each night, and regular stress-reduction techniques.

  Paying attention to your health may be a radical step for you. Maybe you don’t see the need for regular exercise and healthy eating, or you feel annoyed by the constant harping by doctors and others urging you to take care of yourself. But the truth is, it works—especially if you get migraines. If you take care of your health, you’ll feel much better in general, and you’ll almost certainly improve your headaches. Your energy level will increase, your sex life will improve (numerous studies show), and you’ll significantly decrease your risk for many health problems including heart disease, certain types of cancer, depression, and others.

  For help on how to do this, see Part Three.

  Part Two

  CHAPTER 7

  Measuring Your Migraine: The Best Self-Tests

  “I feel frustrated because I don’t think people understand how debilitating a migraine can be. When you tell people you have a headache, there’s sympathy and concern—but sometimes I feel like migraines are not viewed as serious.”

  —Brian, 32, computer programmer

  Doctors today are learning to care for patients with chronic pain conditions differently than they did twenty years ago. Back then, nobody was concerned about how migraine pain affected your daily life or family. Nobody asked if you were missing work or if your partner had to do grocery shopping or care for the kids because you were throwing up in the bathroom. Nobody asked how many weddings or school recitals you missed each year. They only asked, How much does it hurt?—which is a very subjective measure.

  But pain has a very real impact. Migraines can ruin your life. They can make you so sick that you can’t work, enjoy your family, read a book—or even hold your head up without throwing up. Anyone who doesn’t take them seriously just isn’t paying attention.

  Today, when we assess a disease, we also assess the disability it causes—anything that prevents you from performing an activity in the way you normally would. Of the 30 million migraineurs in the United States, 10 million have moderate to severe disability—which means they can’t do much of anything when they’re having an attack. The other two-thirds, or 20 million Americans, have at least mild disability, which means migraine has a significant negative effect on their lives at least some of the time.

  Why Measure Your Migraine Disability?

  It’s really important for you to recognize how migraines affect your life. Why?

  Because it affects how what kind of treatment you need. If you get migraines only once a month but they are extremely painful, that’s very different from someone who gets less painful migraines every single day. Both are disabling but require different treatment plans.

  Let’s say you have a doctor’s appointment today, and a few weeks ago you had a horrible migraine. You spent three days in bed, missed work, and were left out of the family activities. When your doctor asks how you are feeling today, you’ll say you’re fine. Even if you think to mention your last migraine, you may not recall how long you were sick and the impact on your life. That’s why I want you to track and measure your disability along with the frequency of your migraines in your headache diary—so you can help your doctor get you the right care.

  In the past, physicians treating migraine would try a mild medication first—say, ibuprofen—and then ramp up to stronger and stronger drugs if that didn’t help. A patient could end up relying on a powerful painkiller—even if she got only one migraine a month. This treatment plan, we now know, isn’t appropriate. By using certain measuring scales, we can determine your level of disability. If it’s high—you get one migraine a month but it lasts three days, let’s say—you may want to use preventive medication to try to stop the migraine from arising instead of waiting until it arrives and using a strong painkiller to try to address the pain. If you are moderately to severely disabled from migraines, you may want to take preventive medications. If you don’t have much disability, it probably isn’t worth it to take a daily medication.

  With a thyroid
disorder, for example, a blood test assesses how the medication affects levels of thyroid hormone. How the amount of medication is adjusted according to laboratory tests showing how well it’s working. There’s no question about whether to give medication or not. The same goes for lupus or liver disease or yeast infection—there’s a standard course of treatment and lab tests and values to determine how effective the treatment is

  But with migraines, we cannot monitor anything other than your disability from your condition. And then we use this measure to figure out how to treat you. That’s why the MIDAS scale was developed—because the old treatment approach of stepping up to stronger and stronger meds was less than ideal.

  Because it helps us recognize the real impact of migraine on your life. Another important reason to measure disability is that we migraineurs ourselves tend to downplay the seriousness of our illness. Often, we are embarrassed by it, or feel as if we are whining, or are afraid of being seen as weak or frail. But when you measure how much you are disabled, you will recognize that migraine is a serious problem, a defining aspect of your life. We’re not going to let migraine rule your life—but a step toward getting better is accepting how serious your disease is.

  Look at the amount of time you are losing from living your life the way you want to. We’re actually going to quantify this loss of enjoyment. This will help your doctor—and you—take your disease seriously and manage it the best way possible.

  Measuring helps us see if you are improving. And once you start on a treatment plan, how can you tell if it’s working? By measuring your migraine disability. If it’s decreasing, then your treatment plan is working. If not, you and your doctor need to adjust the plan.

  Your Migraine Toolbox

  The Migraine Toolbox is a selection of scales and self-tests that you can use to see how much your life is affected by migraine. We’re also going to give some helpful links to other measures.

  When you share the results of these scales and tests with your doctor, she will get a clear picture of how much of a disability your migraine is. If you say, “I miss four days of work each month from migraine,” or, “I’ve missed three family events in the last six months because I’ve been too sick to attend,” you’ve painted a much clearer picture than, “My migraines really hurt.”

  The MIDAS Scale

  The Migraine Disability Assessment (MIDAS) is an excellent tool that helps determine the effects of migraine on your life. It was created by Professor Richard B. Lipton of the Albert Einstein College of Medicine of Yeshiva University in New York City and Dr. Walter F. Stewart of the Johns Hopkins Bloomberg School of Public Health in Baltimore, in conjunction with a pharmaceutical company, AstraZeneca.

  The MIDAS measures disability in three areas of your life: paid work or school; household work; and family, social, and leisure activities. It takes less than five minutes to complete and gives you a disability number that quantifies how bad your migraines are. Most of my patients are really shocked when they see how disabled they’ve been by migraine. They tend to downplay their illness, to soldier on through the pain, and have never felt validated enough to realize the true impact of it on their lives.

  The MIDAS categories migraine sufferers into four groups depending on the frequency of migraine attacks and severity of pain: “minimal or infrequent disability,” “mild or infrequent disability,” “moderate disability,” and “severe disability.”

  I have all my patients fill out the MIDAS questionnaire during their first appointment, to help me understand how serious their migraines are and what action we should take. Here is the MIDAS scale:

  MIDAS Questionnaire. Please answer the following questions about ALL the headaches you have had over the last three months. Write your answer in the box next to each question. Write zero if you did not do the activity in the last three months.

  On how many days in the last three months did you miss work or school because of your headache? _____ days

  How many days in the last three months was your productivity at work or school reduced by half or more because of your headaches? (Do not include days you counted in question 1 where you missed work or school.) _____ days

  On how many days in the last three months did you not do household work because of your headaches? _____ days

  How many days in the last three months was your productivity in household work reduced by half or more because of your headaches? (Do not include days you counted in question 3 where you did not do household work.) _____ days

  On how many days in the last three months did you miss family, social, or leisure activities because of your headaches? _____ days

  TOTAL _____ days

  Now add up the total days above. Your MIDAS score =

  0–5

  Category I: Minimal or infrequent disability

  6–10

  Category II: Mild or infrequent disability

  11–20

  Category III: Moderate disability

  >20

  Category IV: Severe disability

  This scale is also an important reference point for measuring improvement. Sometimes patients can’t tell if they are improving and get discouraged with their treatment plan. They may not think they are getting better, when, in fact, they are. So, several months or so after we begin treatment, I ask them to fill out the MIDAS questionnaire again.

  In most often cases, my patients can often improve one entire level on the MIDAS scale, too. Even if you begin with a rank of “severe disability” on the MIDAS scale, I feel strongly you can improve to the “moderate disability” level by creating and following your customized treatment plan. If you rank as having a “moderate disability,” I believe you can improve to the “mild or infrequent disability” level. Some patients find even more improvement.

  One of my patients had a MIDAS score of 85 on her first appointment. After three months, she took the MIDAS again and her score had dropped to 60. She was still deep into the “Severe” category, which is anything over 21, and she was feeling discouraged until I pointed out that her disability had dropped by around 30 percent, a huge improvement in the number of good days she was having.

  A headache specialist will likely be very familiar with the MIDAS scale but many other doctors have not heard of it. If you are working with a primary care or family physician on your treatment plan, photocopy the above questionnaire, fill it out, and bring it to your doctor. Your score will help him or her decide how to treat you.

  The Headache Impact Test

  Another tool for measuring migraine disability is the Headache Impact Test (HIT). Both MIDAS and HIT are considered scientifically valid measures of migraine disability, but HIT is a bit different. An online test that takes less than two minutes and provides you with an immediate score, it covers more aspects of headache disability than the MIDAS.

  You can take it at www.headachetest.com or download it and print it out, if you prefer.

  Neither MIDAS nor HIT is necessarily better than the other. I suggest you try both. Your disability score should be similar on both tests since they’re measuring the same thing using slightly different parameters.

  There are other interactive headache tests on the Web where you can get an automatic migraine disability score, but the advantage of the HIT and MIDAS is that they’ve been scientifically validated through empirical studies. Feel free to look at other tests on the Web, but remember that they may not have good data to support their claims. You may come across a tool called the Chronic Pain Index. I don’t recommend using that one as it is not specific to migraines.

  Other Migraine Tools

  There are some interactive tools on the Web that can be interesting and useful.

  Headache Quiz. Here’s a fun, interesting quiz that can also help you determine whether your headaches are migraines: www.headachequiz.com

  Air Quality Quiz. Some migraineurs are very sensitive to air pollution and poor air quality. If you are figuring out your triggers (see Ch.. 4), this tool can h
elp you determine whether poor air quality is among them: www.lungaction.org/reports/stateoftheair2007.html

  Food Diary. The value of a food diary for migraineurs is to recognize foods that may be triggering your migraines. I don’t recommend one food diary over another. You simply need to keep track of everything you put in your mouth for a period of forty-eight hours: everything—food, beverages, chewing gum, candies—and when you ate or drank it. The diary will also raise your awareness about your general eating habits and whether they may be contributing to your migraines.

  CHAPTER 8

  How To Find the Right Doctor

  “I went to one doctor after another but none of them knew what was wrong with me. One doctor got close—he at least brought up the word ‘migraine’—but he said since my headaches came when I was stressed out, they couldn’t be migraines. I finally diagnosed myself with migraine by accident. My aunt happened to mention that she got them, and her symptoms were exactly like mine. None of the doctors figured it out.”