Welcome to ReachMD.
This medical industry feature, “Understanding the Underdiagnosis of Migraine”, is sponsored by Amgen. This program is intended for healthcare professionals.
Your host is Dr. Charles Turck.
For patients with migraine, disruptions to daily life can be both frequent and severe, and the additional burden of experiencing this disease without a diagnosis can be devastating. But why is a diagnosis for migraine so difficult to make? How does that impact our patients’ lives? And what can we do to address it?
This is ReachMD, and I’m Dr. Charles Turck.
Joining me to discuss the burdens associated with the underdiagnosis of migraine are Dr. Susan Hutchinson and Ms. Alexandria Srbinovski. Dr. Hutchinson is a headache specialist and board-certified family practice physician at Orange County Migraine & Headache Center in Irvine, California. Dr. Hutchinson, it’s great to have you with us.
It's a pleasure to be here.
And Alexandria is a migraine patient and advocate for increasing awareness among the public and health professions about the impact of this burdensome disease. Alexandria, thanks for being here today.
Thank you so much for having me.
Alexandria, I’d like to start with you and get to know your story with migraine better. But before we go back to when things started, maybe you can give us an initial sense of the impact that this disease has had on your life.
Definitely. Migraine has significantly impacted my life professionally and personally, and I can speak firsthand to that being the case for many others I know with migraine. For me, one of the hardest things was not having my coworkers and managers understand how migraine had affected my life. I had to stop working altogether because of my migraine headaches. It's definitely not considered or talked about enough, especially in the workplace which is a competitive environment and you’re supposed to show up at your best. That’s why I’ve become an advocate to spread awareness and help other people understand the severity and reality of this disease.
Thank you for sharing that with us, Alexandria. That’s a great cause you’ve taken on to support so many others dealing with this disease.
Dr. Hutchinson, let me turn to you. Based on what we just heard from Alexandria, what are your initial thoughts?
I think Alexandria is doing something so important in raising more public awareness about the impact of migraine, because many people think migraine is just a headache, but it’s clearly so much more than that.
Migraine is actually one of the most burdensome neurologic diseases that impacts patient lives in many ways. About a third of patients suffer headaches on 4 or more days of each month,1 and in a study with more than 18,000 people, more than half reported headaches severe enough to impair them or confine them to bed.2
Additionally, there’s a potential for significant disruption to everyday activities, as well as impact on personal relationships and family activities.2 A MIDAS questionnaire could help assess how disabling migraine is for your patient.3
And these burdens can cascade into others, from the stigmatization patients may feel by people without migraine,4 to the development
of comorbidities.5 And all of this can lead to major costs on a societal level, both directly and indirectly.6
Thanks, Dr. Hutchinson. Alexandria, coming back to you, I’d like to hear more about the origins of your migraine experience and what you were going through before you received a diagnosis. What can you tell us about that time?
I’d say it’s been a true roller coaster experience, starting one day out of the blue when I was 24. I woke up in the middle of the night with something that felt like knives on the left side of my head. I was taken to the ER, which was a scary experience not knowing what was going on. I received several different medications, but the headaches continued after that night and I’ve been hospitalized many times for the migraine since then.
I went to see my clinician and explained to her that I was vomiting, having head pain, dizziness, and was extremely sensitive to sound and light. When I’d go into a store, the light would burn my eyes, and I'd have to wear sunglasses which honestly didn’t help much. So a lot of times I just stayed home in a dark room. And with each headache, my symptoms could last anywhere from a couple of hours to a few days, even when the headache was gone.
And you mentioned that you had brought all of this up with your primary care doctor. What happened from there?
My doctor and I tried many different medications, but they didn’t help much. I was on one of those medications for about three years, but the hospitalizations due to the headaches continued. So eventually, I decided to reach out to a headache specialist.
Thanks, Alexandria. And that’s an experience that we hear often from patients with migraine.
Dr. Hutchinson, as a migraine specialist, what can you tell us about underdiagnoses for patients like Alexandria?
So, one of the bigger challenges in this field is that although migraine is a common disease, it’s been reported to be underdiagnosed.7 In the American Migraine Prevalence and Prevention Study following almost 19,000 people, approximately 44 percent of study
respondents who met the ICHD-2 criteria for migraine never actually received a medical diagnosis.7
And part of this issue stems from what I mentioned before, that migraine is often considered just a headache. But the ICHD-3 guidelines define the diagnosis of migraine based on experiencing at least five attacks that meet specific criteria.8
The first is headache attack duration, which should range from 4 to 72 hours in patients who remain untreated or unsuccessfully treated.8
Then there are specific headache characteristics that need to be identified, such as two or more of the following: unilateral location of the headache, a pulsating quality, with a pain intensity in the moderate to severe range, and avoidance from routine physical activities due to aggravating that headache.8
Lastly, there are non-headache symptoms that also need to be observed, such as either nausea/vomiting or sensitivities to light or sound.8
Since migraine has similar characteristics to other primary headache disorders, such as tension type or cluster headaches, paying attention to what head pain characteristics the patient experiences, how long and frequent the headaches are, and what other symptoms the patient might be experiencing, can help to reach a correct diagnosis.8
For those just tuning in, you’re listening to ReachMD.
I’m Dr. Charles Turck, and today I’m speaking with Dr. Susan Hutchinson and Ms. Alexandria Srbinovski about the burden and experience of underdiagnosed migraine.
Alexandria, let’s get back to your patient journey again from the point of reaching out to a migraine specialist. What was your experience from there?
Well, it was a big first step for me, not without some challenges along the way as well, but certainly helping move in the right direction. I’ve tried a number of medications without much relief yet, but I’m hopeful and I am even getting a second opinion from another migraine specialist to see what additional approaches we can consider.
That’s quite a journey, Alexandria, and one that I think many others can relate to in this context of migraine.
Dr. Hutchinson, given Alexandria’s experience of delayed diagnosis and its impact on her life, what kinds of diagnostic tools can we share with our audience to help bridge the gap?
Sure. In my practice, I see patients, like Alexandria, who’ve had a long battle with migraine and have seen many physicians. And I also see patients who have recently started having migraine headaches. But in either scenario, I follow the diagnostic criteria provided by AHS and IHS guidelines. We have a few tools at our disposal that can help us reach a timely and accurate migraine diagnosis for our patients, and it’s important to note that these tools can be used by both specialists such as neurologists and generalists such as PCPs, NPs, and PAs.
Let’s start with the traditional headache diary, where patients can record their symptoms in real-time.3 Diary tracking is simple in design, and patients can do this digitally or on paper to document the frequency, intensity, duration, and other features of headaches. And the information gathered here can help determine whether further migraine-specific tests and screening could be helpful. Also, it can be customized to capture additional data such as symptom history, medication use, and trigger identifications.
Secondly, there’s the SNOOP screener, which is a useful tool for identifying some red flags calling for further investigation.3 SNOOP stands for Systemic symptoms; Neurological symptoms; Onset sudden, Older, for onset after the age 50; and Pattern change. It only takes a few minutes to complete and can be helpful in ruling out secondary headaches.
Lastly, there’s the ID Migraine tool, which is generally considered to be the gold standard for diagnosing migraine.3 It’s a simplified 3-item questionnaire which assesses nausea, light sensitivity, and headache-related disability, and if a patient answers with a “yes” to 2 of those 3 items, then there’s been shown a high specificity and sensitivity for diagnosing migraine.
Well, clearly, you both have given us really compelling reasons and tools to do everything that we can to help diagnose people like Alexandria. But with more awareness and the right diagnostic tools at our disposal, we can make a positive difference for these patients.
In our next episode, we’ll continue with Alexandria’s journey as we explore best practices toward finding the right treatments and behavioral modifications for patients as the next critical steps to care.
But for now, I want to thank my guests for coming on the program today to share their respective and complementary insights on the burden of migraine.
Alexandria, Dr. Hutchinson, it was great speaking with you both today.
Thank you, it was a pleasure to share this time with you.
Thank you so much. It was so great speaking to you guys as well and I'm super excited for you guys to learn more about my journey.
This program was sponsored by Amgen. If you missed any part of this discussion, visit ReachMD.com/industry-feature. This is ReachMD. Be Part of the Knowledge.
- Houle TT, et al. Headache. 2013;53:908-919.
- Lipton RB, et al. Neurology. 2007;68:343-349.
- Buse DC, et al. Curr Pain Headache Rep. 2012;16:237-254.
- Shapiro RE, et al. Presentation OR15. Presented at: the American Headache Society (AHS) 61st Annual Scientific Meeting; July 11-14, 2019; Philadelphia, PA.
- Buse DC, et al. Poster P61. Presented at: the American Headache Society (AHS) 61st Annual Scientific Meeting; July 11-14, 2019.Silberstein SD, et al. Neurology. 2012;78:1337-1345.
- Bonafede M, et al. Headache. 2018;58:700-714.
- Diamond S, et al. Headache. 2007;47:355-363.
- Headache Classification Committee of the International Headache Society (IHS). The International Classification of Headache Disorders, 3rd edition. Cephalalgia. 2018;38:1-211.