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People with headache disorders encounter many barriers to receiving care, with only 45.5% of people with episodic migraine and 40.8% with chronic migraine completing a consult for this concern.1, 2 Even when patients complete a consult, they may continue to encounter barriers. A recent study determined that 82% of neurologists in an academic center found treating patients with migraine challenging.3 Another study found that the primary goal of physicians was providing pain relief, while for patients, it was receiving an explanation for their disorder.4 This mismatch of goals and the fact that many clinicians find headache management challenging highlights an opportunity to improve communication between patients and clinicians. Health-care professionals are tasked with providing medical information in a way that promotes understanding of the disease and validates patient experiences while removing stigma. The use of analogies and metaphors can allow for greater retention of medical topics, particularly in scenarios in which a learner must imagine an abstract concept that is not otherwise easily visualized.5 When horses were common in urban settings, Harvey used an analogy of a horse swallowing water to explain the workings of the heart and the circulatory system.6 As technology evolved, clinicians employed the analogy of comparing the heart to a mechanical pump to explain these concepts to patients. These comparisons and similes help a learner (trainee or patient) bridge the gap between information to be learned and information the learner already knows.7 In this article, we share analogies that we find useful in clinical practice to communicate information about migraine and headache disorders, discuss patient autonomy and disease spectrum and management options, and address the stigma associated with migraine. A patient advocate also shares their thoughts regarding these communication strategies. With the inclusion of the patient advocate voice, we hope to emphasize the importance of incorporating the patient as the key stakeholder in promoting patient education and clinician–patient communication approaches. The nervous system is like a computer. Primary headache disorders are like having malfunctioning software. If you look at the back of the computer, there may be nothing visibly wrong, but the computer is not working properly because of dysfunction in its software programming. Secondary headache disorders are more like a computer hardware problem, where the problem is visible to an observer. We take primary and secondary headache disorders very seriously as both can cause major problems, just as how both software and hardware problems can affect computer function, even though with one, we can “see” the problem (i.e., hardware issue/secondary headache disorder) and the other we cannot (i.e., software issue/primary headache disorder). This analogy allows for an explanation of the distinction between a primary headache disorder, in which the nervous system is generating the headache based on how it is programmed (i.e., the software), compared to a secondary headache disorder, in which some other condition is damaging or irritating the nervous system (i.e., affecting the hardware) and causing headache as a symptom. Furthermore, this analogy allows clinicians to discuss how primary (i.e., software) disorders have no tests that can prove the diagnosis. Given this, it is not always necessary to do tests to determine if the history and physical exam are most consistent with a primary (i.e., software) issue. On the other hand, secondary (i.e., hardware) disorders are diagnosed through investigations such as blood work, imaging, and other diagnostic tests. With primary headache disorders, there are no tests to prove the diagnosis, and patients may be told their tests are normal or unremarkable. This computer analogy validates both primary and secondary disorders as serious conditions that result in very real symptoms that can impact functioning regardless of a test result. Relatable analogies create trust and partnership. Comparing primary and secondary headaches to the software and hardware of a computer is a real-world idea that patients can understand. This analogy would have helped me understand that migraine was not “just a headache” or head pain and that the severe vertigo, dizziness, light sensitivity, nausea, extreme fatigue, brain fog, and other varying symptoms were a more complex neurological disease that was chiefly invisible on the outside, although on the inside, my “software” was not operating properly. While analogies can be powerful tools, they must resonate with the individual. The hardware/software analogy may intuitively make sense for some, but others might benefit from a different analogy that aligns with their unique experiences. I like to think of your headache treatment journey as a road trip. You are in the driver's seat for this journey, and I am the GPS that will show you the different routes available to you that are safe and reasonable to reach your destination. You will decide which road we take. You will also decide times when you want to go faster or slower or take a break before resuming. If we go down a road that leads to a dead end or obstacles, we can turn around and try another road, slow down, or stop the car entirely. But regardless of the route, we are on this journey together. During consultations, clinicians often provide a lot of information in just a few minutes, overwhelming patients with medical terms and potential medication side effects before asking them to decide. Patients, lacking clinical expertise, often defer to their clinician's recommendations. While the “doctor knows best” approach is common, it raises the question: “Is it really accurate?” We, the patients, are the true experts of our own bodies; we know how we will react to medications and what we are experiencing and need. Ideally, patients should combine their self-knowledge with their clinician's expertise and then make an informed decision. If a clinician is unwilling to engage in an open and respectful dialogue with their patient, treating them as an equal partner in care decisions, it can erode the patient's trust in their care. The road trip analogy works well because it is easily relatable, and patients can appreciate that they are on this journey together with their clinician rather than just along for the ride. While the patient is experiencing the pain and symptoms of the disease, the clinician is their trusted partner, helping to manage the trip through its challenges and successes. This analogy reinforces the trust and partnership in their relationship. I think of migraine disease like a fire. For some people, their migraine attacks are like bonfires that light up during attacks, burn, and then resolve entirely. These bonfires are like what happens to people with episodic migraine, with attacks that come and go. Other times the bonfire may simmer down but have lingering embers that then reignite and turn into a forest fire that is burning to some degree at different intensities most of the time. That is how chronic migraine behaves. When people have migraine attacks that are like bonfires igniting and going out every so often, it is okay to focus treatment to rescue or acute treatments, which would be like throwing a bucket of water on that bonfire. However, when someone has migraine disease that is more severe, like a forest fire, throwing a bucket of water on that fire might help put out some of the flames nearby, but the rest of the forest fire is still burning. In this case, we need to call in some firefighters to help reduce the forest fire and take measures to prevent further forest fires. These are like our reduction and preventive treatments that will aim at reducing the number of total headache days. When it comes to migraine attacks, like a fire, the longer we leave it, the harder it is to put it out. So, we want to throw buckets of water on the fire as soon as the fire starts, and we must take our rescue treatments as soon as the attack starts. It is also important to make sure that you use the full bucket of water, i.e., the full dose of the medication prescribed, and throw another bucket of water on the fire if it is still burning, i.e., repeat the dose as prescribed. Unknowingly, I lived with migraine since childhood and was diagnosed at age 47. I was “that” patient for whom an analogy could have saved a lot of time and kept me from moving from episodic to chronic migraine. The comparison of migraine to fire provides a visual definition of the two forms of migraine, episodic migraine (bonfires) and chronic migraine (forest fires). This clearly educates the patient about how complex migraine is. It is a simple enough analogy that patients can use to explain the complexity of migraine to their family and friends. Using straightforward comparisons, delivered with the right tone, can enhance patient receptivity and support a robust shared decision-making process, improving both overall care and daily satisfaction for providers. Think about migraine like one thinks about asthma. Asthma is a pulmonary or lung disease. Migraine is a neurologic or brain disease. When someone has more severe asthma symptoms, it is called an asthma attack. When someone has more severe migraine symptoms, it is called a migraine attack. However, a person with asthma not having an attack still has asthma. Migraine is similar. Even on days without attacks, you still have the migraine disease. When people have frequent asthma attacks, they need a controller medication to reduce asthma attack frequency in addition to their rescue inhaler. Similarly, in migraine, when someone has four or more migraine days per month, they need a preventive option to reduce the frequency and severity of attacks in addition to a rescue treatment for breakthrough migraine attacks. In both asthma and migraine, there is a wide spectrum of disease; some people may have a couple of attacks a year, and some people may have asthma or migraine symptoms weekly or even daily. And in both asthma and migraine, disease severity and thus treatment can fluctuate over time—sometimes more aggressive and sometimes less aggressive—based on whatever is needed to improve the quality of life for the patients. When considering migraine care, it is crucial for patients to understand their condition and the available treatment options. Clinicians must be attentive to visual cues and emotional responses. If apprehension is noted, they should ask about concerns and provide a detailed explanation around the issue rather than just saying, “Don't worry, this is the best option,” and moving on. By explaining how migraine is like other diseases, the asthma analogy may help reduce the self-stigma that patients experience with their migraine diagnosis and hesitations regarding treatment. Analogies for patient education can improve understanding of the disease and encourage shared decision making. It is crucial for health-care providers to tailor analogies to each individual. As emphasized by the patient advocate, we may be the headache experts, but our patients are the experts on themselves. Using simple and relatable language, clinicians and patients can effectively share their knowledge with each other, build trust, and foster a collaborative patient–clinician relationship that supports joint decision making. Medha Tandon: Investigation; project administration; validation; visualization; writing – original draft; writing – review and editing. Heather Moran: Supervision; validation; visualization; writing – original draft; writing – review and editing. Amaal J. Starling: Conceptualization; data curation; formal analysis; investigation; project administration; supervision; validation; visualization; writing – original draft; writing – review and editing. Juliana H. VanderPluym: Conceptualization; data curation; formal analysis; investigation; methodology; project administration; resources; supervision; validation; visualization; writing – original draft; writing – review and editing. The authors have nothing to report. Medha Tandon declares no conflicts of interest. Heather Moran's organization has received honoraria for serving on migraine advisory advocacy consortium: Lundbeck, migraine & headache steering committee: TEVA, migraine & headache advisory board: Axsome, and she serves as a strategy advisory board member: Patient Focused Medicines Development. She receives personal compensation from Lundbeck for a patient awareness campaign. Ms. Moran is currently engaged in additional publications without honoraria: (1) “Exploring the Relationship Between Migraine and Mental Health: Perspectives from the Patient and Healthcare Provider Experience” for Pfizer, and (2) “Digital Opinion Leader and Social Media Landscape in Migraine” for Pfizer. Amaal Starling has received honoraria and consulting fees from AbbVie, Amneal, Axsome Therapeutics, eNeura, Lundbeck, Medscape, Miller Medical, Pfizer, Salvia, and Satsuma. Juliana VanderPluym has received personal compensation for serving as an associate editor for Current Neurology and Neuroscience Reports, serving as an editorial advisory board member for BMJ, and has patents pending with Mayo Clinic Ventures. Dr. VanderPluym has received commercial research support from Amgen: Competitive Science Award, governmental support from Agency for Healthcare Research and Quality (HHSA2902015000131): Systematic review and State of Arizona (RFGA2023-008-26): 2023 Investigator Grant (AZ IG) or New Investigator Awards (NIA), and academic research support from Mayo Clinic: MEGA Award.
Published in: Headache The Journal of Head and Face Pain
Volume 65, Issue 2, pp. 367-370
DOI: 10.1111/head.14898