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Have you ever felt like your doctor doesn't take your migraines seriously?
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Migraine Heroes is a podcast for chronic migraine sufferers
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who've seen countless doctors with no results.
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Learn how to reduce your migraine attacks without endless medications or constant sacrifices.
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Hello, I'm Diane Ducarme. I've helped over 500 people break free from migraine,
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even after suffering for up to 60 years.
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My mission in life?
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To bring this relief to a million people
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using a unique blend of Eastern medicine and Western science.
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In this episode, you will learn why most doctors and even
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neurologists often lack proper training in migraine treatment.
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How to recognize when your doctor is dismissing your symptoms
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and what to do about it.
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How to advocate for better care and find specialists who truly understand migraine.
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Before we start, it's important to acknowledge and honor
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the many doctors that truly do understand migraine disease.
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While the majority lacks migraine knowledge,
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some have gone beyond standard training pursuing specialized education in migraine care,
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driven purely by their commitment to patient well-being.
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Many of the people we help are referred to us by doctors.
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We even work directly with doctors themselves on their migraine profile,
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with nurses and pharmacists too.
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They are an essential part of our society.
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Our goal in this podcast is to reveal how we came to collectively
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ignore one of the greatest health burdens on the planet
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and how we can change that for the millions living with migraine.
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The first thing I want to talk about is the migraine paradox.
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How is it possible that we have a global burden that is completely minimized by the medical system?
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Migraine is one of the top causes of disability.
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According to the Global Burden of Disease 2021 study,
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migraine ranks as the fourth leading cause of years lived with disability worldwide.
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For women under 50, migraine has consistently been the leading cause,
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the number one cause of disability.
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These rankings place migraine alongside major global diseases.
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But here is the catch.
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Only when you measure disability.
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Where migraine slips in priority is when you look at disability-adjusted life years,
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which combine years lived with disability and years of life lost due to premature death.
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And migraine usually doesn't kill.
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Because migraine rarely causes death,
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it loses visibility in systems that measure impact through mortality.
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In short, because cardiovascular disease kills, it takes precedence and priority.
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The result is that a condition that disables over a billion people
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is often under-recognized, under-treated, and dismissed altogether.
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This is the migraine paradox.
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The burden is massive, but the response is not.
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We're here to change that.
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So why are migraines underestimated and mishandled in Western medicine in particular?
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We will talk about four issues.
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Issue number one, the training gap.
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Just a headache starts in school.
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A significant contributor to the inadequate management of migraine
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appears to be insufficient education during medical training.
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Studies reveal that dedicated education on headache disorders, including migraine,
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occupies a remarkably small proportion of the medical school curriculum.
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We are talking here less than five hours over years of training for most schools.
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Critically, more than 90% of institutions indicated no plans to increase headache education,
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suggesting that the existing minimal coverage was sufficient.
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Despite the rising burden of headaches, medical schools remain complacent.
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The same study found that residency directors,
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so the bosses in residency in family medicine and neurology,
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saw the new doctors unprepared.
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The consequences of this training gap are evident in primary care settings.
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Studies indicate that many primary care physicians
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lack familiarity with the established migraine treatment guidelines.
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This lack of knowledge, potentially combined with time pressure in busy clinics,
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can lead to suboptimal treatment strategies.
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Some primary care physicians express a lack of confidence and even a sense of dread
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when managing migraine patients.
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Efforts to improve headache education face hurdles.
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Medical schools cite insufficient time with packed curricula,
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a lack of administrative support for developing or prioritizing headache modules,
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limited availability of educational resources,
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and even a perceived lack of student interest as key barriers.
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The specialist gap.
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Neurologists aren't always headache experts.
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So while migraine is fundamentally a neurological disorder,
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seeking care from a neurologist does also not guarantee access to specialized headache expertise.
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The field of neurology is really vast,
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encompassing a wide array of complex conditions,
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such as stroke, epilepsy, dementia, multiple sclerosis,
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Parkinson's disease, and neuromuscular disorders.
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Four out of six I just cited can lead to death and therefore seen perceived more urgent.
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Within neurology, only a relatively small fraction of practitioners
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choose to subspecialize in headache medicine.
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Many neurologists dedicate their focus and practice to other areas,
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like epilepsy and stroke management.
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The United Council for Neurologic Subspecialties,
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which provides certification for headache medicine,
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listed only 729 certified specialists in the US as of 2023.
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This number pales in comparison to the estimated tens of millions of Americans living with migraine.
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Headache medicine itself is a relatively young subspecialty,
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gaining formal recognition only within the last 15 to 20 years.
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Now I want to insist that here, a lot of the data comes from the US,
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as these trends are absolutely applicable to other countries as well.
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The consequence here is a significant shortage of qualified headache specialists to meet patient
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needs. So many states are reporting in the US a lack even of a single more certified
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headache medicine specialist, just a single one within a state.
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Despite the specialist shortage,
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headache remains the most common reason patients are referred to neurologists,
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accounting for nearly 2 million visits annually in the US.
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This really high volume, coupled with a limited number of dedicated health experts,
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creates a significant bottleneck.
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Issue number three, gender bias, the emotional woman.
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A crucial yet often uncomfortable factor contributing to the dismissal of migraine
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is gender bias. Migraine exhibits a pronounced gender disparity,
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affecting women three to four times more than men.
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A body of evidence indicates a pervasive tendency within the health care system
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to underestimate, dismiss or psychologize women's pain compared to men's.
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This general bias has direct implications for migraine care.
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Women with migraine tend to report higher levels of disability,
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longer attack durations and more associated symptoms compared to men.
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Despite this greater burden, they may encounter stigma and receive less comprehensive care,
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increasing the risk of underdiagnosis, undertreatment
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and the development of medication overuse headache.
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Clinicians might incorrectly attribute migraine symptoms solely to comorbid anxiety or depression,
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conditions that are indeed more prevalent in migraine sufferers.
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Issue number four, primary care treatment patterns.
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Are we doing acute relief over proper prevention?
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The typical approach to migraine management in primary care setting
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often appears more reactive than proactive,
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potentially contributing to suboptimal long-term outcomes.
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Evidence suggests a strong emphasis on treating migraine attacks themselves as they occur,
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rather than focusing equally on preventing them.
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Many physicians may default to prescribing acute medications,
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such as over-the-counter painkillers, non-steroidal anti-inflammatory drugs
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or migraine-specific triptans, without sufficiently exploring preventative strategies
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or addressing underlying triggers.
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An over-reliance on acute medication carries significant risk of,
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what you now know, developing medication overuse headaches.
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A migraine caused by frequent use of migraine medication themselves,
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and this is trapping patients in a cycle of escalating headache frequency and medication use.
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A key aspect of effective migraine management involves identifying and managing individual
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triggers, which can range from stress, hormonal fluctuations, and sleep disturbances,
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to dietary factors, weather changes, and sensory stimuli.
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However, uncovering these triggers typically requires detailed patient tracking
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and detailed discussion, time during appointments,
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elements that may be lacking, and brief primary care visits focused on acute symptoms management.
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Now, what's the ripple effect? What are the consequences of inadequate migraine care?
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When migraine is not taken seriously, misdiagnosed, or inadequately treated,
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the consequences extend far beyond the immediate pain of an attack.
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Misdiagnosing migraine is both common and costly.
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Up to 80% of migraine patients are initially given the wrong diagnosis,
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often mislabeled with sinus issues, tension headaches, or general head pain.
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This happens because diagnosing migraine requires pattern recognition and careful history-taking,
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skills many providers lack due to insufficient training.
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As a result, patients bounce between emergency rooms, specialists, and unnecessary treatments,
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with one study showing nearly six times more neurologist visits
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and significantly higher healthcare costs for those misdiagnosed.
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Worse than that, delays in proper diagnostic and treatment can cause
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episodic migraines to progress into chronic migraine,
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turning an already disabling condition into a daily battle.
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So, I want to share a little bit of a very personal experience on this topic.
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The first person, as you probably know from the website I help with my sister,
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she was 10 years ago, she was suffering from migraines for three years,
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and our uncle had died of a brain tumor and I helped her.
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Within three to four months, she had no more migraines.
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I did that with Dr. Zhang.
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And so, when my friend from New York told me she had migraines for seven years
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and they were very debilitating, I said I was very sorry.
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And she said that she had had a very confrontational conversation with her dad
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because her dad had told her to medicate for a lifetime, including having injections.
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And you probably have heard this story as well in some podcasts.
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But here's the part that I've, until now, never really told before.
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I was really proud.
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His daughter, he was a neurologist and we got her out of migraines
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and it took three to four months.
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It wasn't even, quote unquote, that hard.
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I had done that with Dr. Zhang.
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I felt super proud and felt super excited to go and talk to him
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and to have such an intellectual and amazing, enlightening conversation about
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how they look at it and how, you know, maybe it was not about muting the problem,
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but trying to listen to it and address the root cause.
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And the conversation I had was profoundly different.
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He said to me that he didn't really doubt I had done what I had done,
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but that I should never develop migraine heroes.
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Because he said that he would never recommend a service like mine
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and other neurologists wouldn't
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because I wouldn't be able to pay them the amount of money
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they would be paid by pharmaceutical companies on medications to do that.
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And so therefore, I shouldn't develop the business because it would never go anywhere.
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And there I was trying to explain to a doctor something about health
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and he was trying to teach me business.
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I studied at the Harvard Business School.
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This was not business.
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And we were having this conversation.
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I just couldn't believe it.
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And so I said, look, I will find people who are interested.
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I will find companies and address myself to companies, which we will do.
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I will address myself to insurers, which we will do.
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I will address myself to governments and sensible governments and say,
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look, you're leaving money on the table.
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You're leaving people sick.
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Can you help, please?
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And he said, oh, yeah, that's probably quite smart.
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Probably that would work.
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But surely, you know, we neurologists would not do that.
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Now, his belief and his way of thinking,
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and I really do not think it represents a majority of people,
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but it did that day really remind me
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of how much the nature of a business problem this all is.
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Later on, I faced a similar conversation
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as I had a number of investors who wanted to invest in my business.
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There were seven of them across the US and Australia and New Zealand.
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And one of them asked a question.
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He said, oh, you solve people's problems.
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Yeah, that's a problem.
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You solve the migraine.
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Can you make them sick longer?
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And I said, excuse me?
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Can you make them sick longer?
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It's a business issue if you solve their problem.
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And this is really when with these two experiences, I figured out it is a business problem.
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You often hear me say, if you meet me, that in 1969, we went to the moon.
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Is helping solving your migraine harder than going to the moon?
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Of course, everyone's different and it's dynamic.
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Migraine is a moving target.
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However, is that impossible?
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If you set your mind to do it, it's actually feasible.
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And that's what we've decided to do every day.
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At that moment, I understood I'm going to be alone.
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And so as a family, we decided my husband would do well and I would do good.
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And that as a family, that's the balance that we would find.
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And so I'm incredibly grateful because he supported me in my intellectual quest and
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integrity to try and do the right thing.
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And so the results that you see in the Migraine Heroes app today is the results of a collection
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of nine of us trying to do the right thing every day.
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So how to take control of your migraine care?
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There's five things I want you to do, and I want you to do all five of them.
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So make sure you tick those boxes off.
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The first one is you need a proper diagnosis.
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It's important to get diagnosed properly.
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This is why doctors are so helpful and so kind.
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Do that MRI. Do that CD scan. Exclude all other possibilities.
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Number two, I want you to track your migraine attacks and symptoms.
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Because knowledge is power.
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Spot your own patterns.
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Are your migraines tied to your cycle? Tied to barometric pressure? Tied to stress or
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Advocate for yourself.
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Tracking is going to help prove when a medication isn't working.
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It's going to help support your insurance claim.
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We'll cover that in another episode.
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The Migraine Heroes app allows you to do all of that tracking for free.
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And once you track, we can interpret your data.
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In our next release, I'm super proud of this,
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you'll get personalized reports based on Global Insights because we work with migraine
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sufferers worldwide and that we solve them.
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We often spot patterns even seasoned doctors will miss.
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The third thing I want you to do is I want you to foster a better communication with
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your doctor. Come prepared
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before your visit. Summarize your migraine history and write down your top two to three
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This is going to help your explanations be focused and impactful.
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You can ask clear and respectful questions like what is your experience with migraine?
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Where did you train in migraine management?
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Are you sponsored by pharmaceutical companies?
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Why are you giving me this treatment over another?
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Don't hide your truth.
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Let them know how hard this journey has been.
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When I review test results with women, you know, I would say one in three times that person
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It's a long journey.
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And I'll admit for me, it's really hard to hear them too.
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What you go and what you go through and what you live is really hard.
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Not everyone will listen.
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So sharpen your words, stand tall and speak up.
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Feel and be tough in your words.
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You can speak back.
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You can speak loud.
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Encourage also collaboration.
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Use language like I'd like to explore these options together
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to open the door for shared decision making.
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You are also in the driving seat.
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Now, number four, know when to seek specialist or second opinion.
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If your migraines are frequent, worsening or not responding to treatment, ask for a
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Look for neurologists who are certified in headache medicine or affiliated in headache
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Don't hesitate to get a second opinion.
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It's common, it's wise and it's often necessary.
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And then last but certainly not least, trust your instincts.
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If you're being dismissed or your symptoms are labeled as just stress, speak up.
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You know your body.
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Don't let anyone downplay your experience.
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If something doesn't feel right, advocate, ask for more evaluation and change provider.
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And remember, every small step you take moves you closer to freedom.
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You are powerful, you are resilient and you're never alone.
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Keep rising, migraine hero.
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Found this episode helpful?
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Hit subscribe so you never miss an episode with the powerful insights and practical tips
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