You've Just Been Diagnosed with Migraines. Now What? (2024)

Key points

• First being diagnosed with migraines can be frightening and lonely.
• You can educate yourself, get quality care, and try treatments to help you cope with the complex symptoms of living with migraine.
• Finding the right medical treatment(s) is critical, and patients can feel impatient, frustrated, and lonely until they do.
• Don’t give up hope; we finally live in a time when research, science, and medical treatment are ongoing for this largely misunderstood disease.

Diagnosis and treatment were very different 44 years ago when I suffered my first migraine attack. Very little was known about the disease, and really no one knew how to treat it. My parents struggled, taking me to doctors, chiropractors (whose profession was new then and not as widely accepted as it is today), neurologists, and other specialists in search of someone or something that might offer me relief.

Fortunately for all of us, none of this is true today. While there is still much to learn and still no cure, we have so many better treatment options, and so much is now known about what migraine is and isn’t. We now know, for instance, that this is a brain disorder, a hyper-activity of the brain, and we now have medications, only recently, specifically designed only for migraine.

However, since it’s still a very stigmatized, invisible, and misunderstood disease, when a person is first diagnosed, they may not know what steps to take for treatment, what education, and response to follow, and the best ways to cope and live with the illness.

Let’s start with some things you should do once diagnosed:

• Educate yourself about the disease by going to one of several reputable and important migraine organizations, each of which includes education for patients, information about what migraine is and isn’t, resources, tips, articles on different themes related to migraine, and also up-to-date information about treatment options and availability.
• Find the right healthcare professionals to guide you. If you have a headache specialist in your area, that would be the first and probably best option, as these are neurologists who have taken specific training in migraine and who stay most current on the research, medications, and devices now being used to treat this illness. If you don’t have access to a headache specialist, be sure to locate a neurologist interested in working with migraine patients (not all are) and who stays current with treatments. Above all, be sure that you find a physician who is empathic with migraine, as every migraine patient comes with different triggers, warning signs, ability to take or not take medications, and an individualized array of symptoms before, during, and after an attack.
• Be patient with your medical professionals and with yourself. Finding the right combination of treatments that work for you can be a trying and wearisome process. Remember, no one medication or approach works for everyone.
• Take advantage of other ways you can help yourself:

1. If stress is one of your triggers, for instance, consider some form of relaxation therapy.
2. Try to get exercise, as difficult as that can be sometimes.
3. Stay on the same sleep schedule (sleeping too little or too much often leads to migraine).
4. Look for patterns in behavior and triggers that often lead to your migraine attacks.
5. Keep a migraine journal. You’ll find good templates on the major migraine organizations’ websites. Yes, they can be tedious to fill out, particularly if you are in the middle of a migraine, but they help your doctors and you see your patterns of bad, good, and so-so days, as well as what medications are and are not working for you.
6. Consider other non-pharmaceutical treatments, including chiropractors, physical therapists, acupuncture, biofeedback, cognitive behavioral therapy, as well as devices like Cefaly, which can now be purchased without a prescription.
7. Discover whether your area has a migraine support group.
8. Learn from the many wonderful migraine advocates. The more you learn about the disease and the complexities of it, the more you’ll begin to recognize the important role the advocates play.
9. Communicate effectively with your family, friends, and co-workers about this disease, because, unfortunately, the common perception remains that “It’s just a headache.”

Now, let’s turn our attention to what steps or actions you don’t want to take:

• Don’t settle for the medical care you are getting if you don’t feel listened to, if the physician is not empathic, doesn’t fully understand the complexities of the disease and, therefore, the necessary “trial and error” that often comes with treatment, and doesn’t seem to recognize current medical options available, as well as new ones coming soon. Be sure they are encouraging, always leaving you with a sense of hope, the idea that if what you are trying now doesn’t work, there’s always something else to try.
• Don’t stay in the dark. Educate yourself, but be certain you turn to reputable organizations and literature about the disease. Some Facebook groups are excellent, though not all, for instance.
• Try not to feel guilty for your pain, your other symptoms, or missed gatherings with friends and family.
• Don’t change your sleep patterns—any disruption can lead to migraine.
• Above all, don’t lose hope. This last point can seem so cavalier, so cliched, but it’s really true, particularly now. New treatments and a better understanding of how migraine works are ongoing now, in ways we have never had.