The Migraine Experience: Unseen and Overlooked
Migraine attacks are often characterized by throbbing head pain, sensory disturbances, and neurological symptoms. Yet, the invisible nature of this disorder makes it difficult for others to fully grasp the extent of the suffering experienced by those living with migraine. What makes it even more difficult is that each individual will have a different experiences with their own migraine symptoms which leads to misconceptions and misdiagnoses.
As a result, those afflicted often feel isolated and invalidated, leading to prolonged delays in diagnosis and suboptimal treatment. Despite being a leading cause of disability worldwide, migraine remains underestimated and overlooked (Lipton et al., 2021). This underestimation stems from societal perceptions of migraine as mere headaches and that they may be due to poor self care or modifiable lifestyle behaviours. The result is further invalidation and marginalization of affected individuals.
My 12 year old daughter recently told her teacher she was experiencing a migraine attack but didn't want to come home from school. She asked if she could lay down for a while and was told that "this isn't pre-school." What does this do to a young female's perception of their disease? My daughter was essentially told she was being infantile and to suck it up. This messaging will shape her lifelong journey with migraine."
Disparity in Migraine: Amplifying the Struggle
The burden of migraine disproportionately affects females, with 3x higher prevalence rates compared to males. Hormonal fluctuations, genetic factors, and potential gender biases in healthcare contribute to this gender disparity. Research has revealed that females with migraine are more likely to experience dismissal or trivialization of their symptoms when seeking medical care. This invalidation results in prolonged suffering, diminished quality of life, and reluctance to seek help. Sadly this invalidation often starts in adolescence when migraine symptoms are dismissed as being a “normal” part of menstrual symptoms or something that can be addressed by “drinking more water.”
My 12 year old daughter recently told her teacher she was experiencing a migraine attack but didn't want to come home from school. She asked if she could lay down for a while and was told that "this isn't pre-school." What does this do to a young female's perception of their disease? My daughter was essentially told she was being infantile and to suck it up. This messaging will shape her lifelong journey with migraine."
Patients often tell me that after having a normal physical assessment or neuroimaging with their healthcare provider, they are told they’re “fine” and it’s “just migraine.” This is often followed by advice related to self care management – such as improved hydration, stress reduction, or improving sleep. This minimizes migraine and overlooks that it is a neurological disease that has several effective treatment options. We don’t think twice about treating hypertension, or diabetes, but those with migraine are abandoned by our healthcare system and aren’t offered effective treatment. There is a long history of women’s health issues being disregarded and normalized despite having negative functional impacts. Although migraine is more prevalent amongst genetically born females, males with migraine are even less likely to be diagnosed or receive treatment. Members of the LGBTQ+ community experience even higher burden of disability due to migraine and the least likely to receive appropriate treatment.
Stigma and Self-Blame: An Emotional Toll The invisibility and stigma of migraine often results in those with migraine blaming themselves for their condition. Robert E. Shapiro's advocacy perspective underlines the emotional burden faced by those living with migraine as they internalize society's misconceptions, questioning their own self-care and resilience. My patients tell me about the impact of this stigma over time. They start to wonder if they are over-inflating their suffering and whether they are to blame for their migraine symptoms. Self-blame perpetuates a cycle of negative emotions, exacerbating migraine symptoms and affecting overall mental well-being. Over time, this intensifies the stigma surrounding migraine, and hampers efforts to understand and effectively manage the disorder. I have witnessed an unbelievable capacity in those living with migraine to push through and continue to function. This is often driven by the misconception that there is nothing that can be done to treat migraine and these people find the strength to keep living as best they can. However, once appropriate treatment is established and symptoms improve, there is often a sense of loss and mourning for all of those years of suffering.
The Essential Role of Nurse Practitioners in Headache Care
Escaping the cycle of stigma and self-blame necessitates comprehensive and specialized migraine management. Nurse practitioners are regulated healthcare providers who can independently diagnose, order investigations, and prescribe medications. Most importantly, they have expertise in providing patient centred care and empowering patients through health education and capacity building. Nurse Practitioners are perfectly positioned to take the time needed to understand an individual’s migraine characteristics and treatment needs.
Reframing Migraine Misconceptions
First - understand that migraine is a spectrum of symptoms and severities.
Many people falsely think that they experience tension-type headache, TMJ dysfunction or sinus headaches because they experience pain in their neck, jaw, or around their sinuses. Neck and jaw pain are common migraine symptoms. Chronic migraine often consists of baseline milder symptoms or dull head pain with additional days with more severe symptoms (headache, sensory sensitivity, or nausea) that have a larger impact on function. Other people may not identify as having migraine when they compare themselves to a sister, friend, colleague who “is much worse” or has different symptoms. Migraine is different for everyone.
Second – remember that migraine is not your fault. It is a neurological disease. It is not just a headache. Society and the healthcare system has minimized the impact of migraine and has perpetuated misconceptions about this disease. It is not because of something you are doing. We don’t aim to cure migraine, but that doesn’t mean that there aren’t several ways to reduce attacks, manage symptoms, and minimize impact on quality of life.
Third - arm yourself with knowledge. There are so many new and effective treatments for migraine. Acute treatments should stop an attack and get you back to function. If they aren't doing this, then they may need to be changed. Many people accept "taking the edge off" with an ineffective medication. If migraine attacks are frequent (4 or more per month) then preventative treatments should be considered. While many older oral medications aren’t specific to migraine and can have side effects, they can still be very effective for many people. There are several other specialized treatments that aren’t typically offered in primary care. Botox has been approved since 2011, we have had CGRP monoclonal antibodies since 2018, and 2023 has brought us the Gepants. These are all effective, safe, and well tolerated medications with little to no side effects for most people. Ask your healthcare provider about these treatments or seek out a specialized migraine provider – either through our public system or in a private clinic like mine.
What to Expect from Migraine Specialized Care
I have dedicated my clinical practice to managing migraine and primary headache disorders. I have been a clinician for over 16 years and for the last 7 years I’ve focused exclusively on understanding current evidence related to migraine pathology, symptomatology, and treatments. The foundation of my practice is a supportive environment where individuals are heard and validated. Open communication, free of judgement, allows for personalized care plans that are developed collaboratively. Based on each person’s values and preferences, we discuss all evidence-based treatment options from holistic and natural approaches, to specialized prescriptive treatments. It is the most rewarding work I’ve ever done. At the same time, it is disheartening to see most people with migraine suffering without treatment for so long. There are so many options - accepting unnecessary suffering shouldn't be one of them.
In case you need to hear this - and we all do at times:
You deserve to have someone listen to your story - all of it. You are the expert in your own body and how it feels. You should never walk away second guessing your own experiences. There is someone out there who will understand. Don't give up.
References:
1. Lipton, R. B., Stewart, W. F., Diamond, S., Diamond, M. L., Reed, M., & Group, A. (2021). The Burden of Migraine: Current and Future Perspectives. Headache: The Journal of Head and Face Pain, 61(9), 1317-1324. doi: 10.1111/head.13913.
2. Rosendale, N., Guterman, E. L., Obedin-Maliver, J., Flentje, A. Capriotti, M. R., Lubensky, M. E., Lunn, M.R. (2022). Migraine, Migraine Disability, Trauma, and Discrimination in Sexual and Gender Minority Individuals. Neurology Oct 2022, 99 (14) e1549-e1559; DOI: 10.1212/WNL.0000000000200941 3. Shapiro, R. E. (2021). What Will it Take to Move the Needle for Headache Disorders? An Advocacy Perspective. Headache: The Journal of Head and Face Pain, 61(8), 1132-1136. doi: 10.1111/head.14152.