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Those who persevere through migraine know all too well the struggle that comes with living with this debilitating disease. The nausea, agonizing head pain, sensation disturbances, temporary cognitive impairment, and the general feeling of lost control over their own bodies. While there are many types of migraines, those living with vestibular migraine live a unique struggle when it comes to managing their attacks.

What is Vestibular Migraine

Migraine is considered a complex neurological condition. Vestibular migraine is unique within this class. Vestibular migraine is often referred to by its nicknames, “dizzy migraines” or “migraine-associated dizziness,” also “migraine-associated vertigo,” and “brain stem aura” by patients who suffer from pronounced vestibular symptoms associated with their migraine.¹ 

Symptoms of Vestibular Migraine

Similar to classic migraine, vestibular migraines have a multitude of debilitating symptoms. Recent literature has classified these symptoms into two classes: ictal and interictal. This classification system is synonymous with the categorization of chronic migraine symptoms as primary and secondary. Ictal symptoms tend to occur during a migraine attack, while interictal symptoms trigger during remission of an attack.²  

The most common symptom associated with vestibular migraine is vertigo or dizziness. Most patients also report dizzy sensations, such as constant falling, rocking back and forth, out-of-body experiences, and spatial disorientation. “Alice in Wonderland Syndrome” is a clinical term that refers to a severe perception of viewing the world from a shrunken standpoint due to spatial disorientation.³ 

It is important to distinguish that vertigo can occur with or without a headache. It is also crucial to understand that vertigo can coincide with common migraine symptoms such as:

• nausea
• constipation
• mood changes
• polyuria (increased urination)
• confusion
• sensitivity to sounds and smells
• visual aura
• lightheadedness⁴
• problems with hearing
• problems with taste and/or smell
• body aches (i.e., shoulder pain, and neck and back pain) 

The rate of the brain’s recovery, from vestibular migraine, is the same as a classic migraine patient: it takes time for the brain to recover from any migraine attack and the time period of recovery is variable for every person.²

What Causes Vestibular Migraine

If getting a proper diagnosis is enervating enough, pinpointing the triggers and the exact origin of vestibular migraine is just as perplexing, even to the experts in the field of migraine research. Over the years, many competing theories have emerged to try to explain the pathophysiology of this devitalizing condition. The triggers, however, have gathered more of a consensus among the experts.    

Vestibular migraine has similar triggers to those of typical/classic migraine, such as: 

• changes in weather patterns
• stress
• menstruation/menstrual cycle changes
• skipping meals
• intolerance to certain foods/food triggers
• dehydration
• lack of sleep

The truly unique triggers of vestibular migraine are:

• exposure to a lot of head movement
• overload of visual stimuli²  

Over the years, there have been many competing theories that have emerged to try to explain the pathophysiology of this devitalizing condition. The three leading theories that surround the common cause of this type of migraine are:

• structural problems found in the inner ear
• coexistence with Meniere’s disease and BPPV (Benign Paroxysmal Positional Vertigo)
• dysfunction of the vestibular pathway

Structural inner ear problems

In the structure of the inner ear, there are microscopic crystals that help us maintain our balance. Just the same as our bodies constantly replenish us with new blood cells and skin cells daily, crystals found within the inner ear eventually fall off, get dissolved, and are soon replaced with new ones. However, as we age, the rate at which we lose these crystals becomes higher and occurs much more often, which leads to an accumulation of loose crystals rattling in the ear canal, which is regarded to be the cause of vertigo.

In patients with vestibular migraine, the process of losing crystals at an accelerated rate seems to occur in young patients rather than normal crystal loss seen in older patients. The shedding of these crystals seems to cause injury to the part of the inner ear called the otolith organ. Once these crystals become loose, they can trigger bouts of vertigo, as seen in patients with a similar condition known as BPPV. The clinical implications suggest that the displacement of these crystals could lead to mild hearing loss at later stages of life.²

Coexistence with Meniere’s disease and BPPV

Meniere’s disease, BPPV, and vestibular migraine are similar in many ways, but the statistics that surround them are not to be mistaken as a coincidence. Experts have found the following statistics:

This theory suggests that there could be a possible spectrum in which patients could fall between these two conditions. Some patients may suffer specifically from inner ear issues, while other patients, with migraine, suffer a fall during an attack, which then could turn into Meniere’s disease.⁵ 

The statistics surrounding BPPV in migraine patients also suggest a clinical trial relationship. Around 22% of patients with vestibular migraine are found to have loose crystals. In one clinical trial, of 500 vestibular migraine patients, 47% were found to have BPPV. However, experts also found 22% of that group actually had been diagnosed with BPPV at the same time of their vestibular migraine initial diagnosis.⁵

Dysfunction of the vestibular pathway

Similar to classic ordinary migraine, disruptions in the neural pathways are commonly cited as a cause for vestibular migraine is a common explanation. The consensus, among this theory, suggests that the disruptions seen in the vestibular pathway are not solely caused by injury, but rather by poor functionality.⁴  This theory also suggests that, similar to how there are changes seen in the visual processing center of the brain in classic migraine patients, which produce a visual aura, the changes seen in the vestibular processing may be triggered by change because of activity in the vestibular nuclei. Other interconnected pathways seem to be affected (vestibular nuclei, other structures, and blood vessels).⁵ 

Diagnosis of Vestibular Migraine

Vestibular migraine is often misdiagnosed due to its symptoms masquerading as other vestibular disorders.

BPPV (Benign Paroxysmal Positional Vertigo)

BPPV is a condition characterized by brief sessions of mild to severe dizziness, often triggered by changes in head position.⁶ This condition’s origin is set among the crystals in the structure of the inner ear that become loose and get lodged in canals of the ear that maintains balance. The difference between BPPV and PPPD is the length of vertigo spells. A patient with BPPV typically experiences about 30-40 seconds worth of episodic vertigo while PPPD patients’ vertigo seems unrelenting.

PPPD (Persistent Postural-Perceptual Dizziness)

PPPD is a condition that is closely related to BPPV. The main difference between the two is that with PPPD, the patient has persistent dizziness, unsteadiness, and disequilibrium that can be triggered by any condition that causes vertigo. The condition is also associated with vestibular migraine because of the repeated attacks of vertigo.²

Meniere’s disease

Meniere’s disease affects the inner ear and can cause the patient to experience episodes of dizziness and hearing loss. The cause is unknown but is believed to be attributed to fluid imbalance or accumulation in the inner ear. Its symptoms overlap with sinusitis with patients reporting fullness or pressure in the ear and changes in hearing levels, and tinnitus (ringing in the ear.) Similar to migraine patients, those with Meniere’s disease also report phonophobia (aversion to loud noises) and photophobia (aversion to bright lights). 

Vestibular migraine differs from Meniere’s, PPPD, and BPPV as the dizziness associated with this disease tends to occur along with the neurological symptoms that are typically seen with migraine.

Sinusitis

Sinusitis is the inflammation of the membranes found within the sinus cavity. Because 90% of patients report facial pressure, this could lead to the improper diagnosis of sinusitis or sinus headache rather than what could most likely be vestibular migraine.⁷

Tinnitus

Tinnitus is defined as a condition where a patient hears a constant ringing sound without the presence of an accompanying external sound. The prevalence of vestibular migraine in conjunction with tinnitus is high enough that most clinicians would consider there to be possible links between them.² About half of people who are diagnosed with vestibular migraine also report tinnitus symptoms while another study found 80% of patients reported a spinning sensation. 

Concussion

At the extreme end of the diagnostic spectrum, vestibular migraine could be misdiagnosed as a concussion. Of course, the likelihood of this diagnostic mistake is considerably low without the instance of a head injury. People who suffer a concussion can have dizziness or vestibular symptoms of ringing or other sounds within the ears.⁸

Given the overlapping symptoms in many vestibular conditions and vestibular migraine, getting a proper diagnosis can be challenging. To make matters worse, many patients experience another hurdle in getting an accurate diagnosis: how to find the right specialist? 

Neurologists and Ear, Nose, and Throat specialists (ENTs) are the most common specialists who receive patients who report vertigo and dizziness. However, one of the main issues with this referral paradigm, while it seems innocent, is that ENTs are not adept at managing vestibular migraine patients’ treatment plans in an ever-changing treatment landscape. And the other is that while neurologists are familiar with how to navigate the medication landscape, vestibular migraine is still a relatively poorly misunderstood condition, even among the experts in this field of specialists.²  

The best answer for which specialist a patient fitting the criterion for vestibular migraine should seek out is one who has training in ear medicine and ear neurology. This specialist may go by the following names, depending on the department in which they work: 

• otoneurologist: A neurologist who also specializes in ear conditions
• neurotologist: A specialist who specializes in both otology and neurological conditions pertaining to the ear.⁵ 

Unfortunately, there is no specific test for diagnosing vestibular migraine. Researchers currently classify it as following a “classic migraine pattern of disease.” Meaning a patient goes to their doctor reporting an increase in headaches and other neurological symptoms, including dizziness.⁵    

Recently, as of 2019, the International Headache Society constructed the term “vestibular migraine” in order to ensure stricter diagnosing criteria and to continue the study of vestibular migraine in greater depth. Unfortunately, while criteria like this are useful in biological and clinical efficacy trials, it presents a problem when people use the criteria as means to learn about the disease further. However, vestibular migraine is still a relatively new condition. So much so, in fact, it is surprising that most medical schools don’t teach vestibular disorders in their curriculum.² As a result, the hallmark symptoms of vestibular migraine, i.e., dizziness and vertigo, are unfortunately not widely hot topics in the medical community. Thus, the diagnostic criteria are still relatively new as the condition is still coined as “new” based on its low understanding by experts.²

The next question would then be if getting an accurate vestibular migraine diagnosis is not any easier than managing symptoms, are there consequences of not getting a proper diagnosis early? Well, the answer is simple: the consequences would follow a similar trajectory as any other chronic condition that is ignored. The patient is likely to experience worsening symptoms relating to their vestibular migraine, particularly their interictal symptoms. 

Who Gets Vestibular Migraine?

Previous studies’ statistics have observed the following conclusions:

• Young women in particular, who have recurrent vertigo, migraine is the most likely diagnosis.⁴
• Vestibular migraine tends to occur in people who are in their late 30s and older.²
• Vestibular migraine tends to affect people following menopause. While patients tend to suffer from migraine headache attacks during their reproductive years, the headaches tend to improve once menopause occurs, then manifestations of vertigo and dizziness tend to set in soon after menopause.
• The prevalence rate of vestibular migraine in children is between 0.7%- 15%.⁹

Migraine disease is tricky to pinpoint susceptibility. But common consensus agrees that the diagnosis of migraine largely has to do with certain pathophysiologic mechanisms. If we are to approach this from the nature versus nurture epidemiological debate, science has determined that the genetic and environmental factors are split either 50-50 or 60-40. However, the genetic expression of migraine can vary even within an individual’s family, where it is possible this expression can be very different.⁵ It bears noting that patients with migraine have a low threshold for certain stimuli. In the case of vestibular migraine patients, the sensitivity of balance and tilting tends to be greater compared to individuals without migraine.⁵ 

Treatments for Vestibular Migraine

Luckily for those who are afflicted with vestibular migraine, there is a wide range of treatments available to ease symptoms and improve quality of life. 

Healthcare providers advise patients to establish an ACTION plan to manage and treat their migraines. The ACTION plan is broken down into five categories.

Step “A” (alternative therapies)

The first part of developing an ACTION plan is to consider alternative therapies (Step “A”). Alternative therapies include vitamins, herbs, nutraceuticals (a substance that is a food or a part of a food that has medical or health benefits), and exercises that are fitted to the individual. 

Step “C” (changes)

Part two of the ACTION plan is to implement changes (Step “C”). This stage of the sequence involves two parts. It is necessary to identify triggers and avoid them in this step. The changes that take place can be little or big changes. Examples of this would be creating a diet that you can stick to or one that is specifically tailored to be anti-inflammatory, reducing the number of stress triggers, and avoiding food triggers.

Step “T” (therapeutic options)

Part three is to explore therapeutic options (Step “T”). This involves finding preventive and acute medications that fit your symptoms and lifestyle. This is the step with the most trial and error. This could be the most frustrating part of the sequence that can span years. Even if a medication is effective, it can become less effective over time, which could lead to searching for a new option.

Step “I” (interictal symptom management)

Part four is specifically catered to treating/managing interictal symptoms (Step “I”). This is the step that requires a dispelling of stereotypes around migraine. The ongoing challenge in managing migraines is a reminder that symptoms are truly more than the sum of their parts. It’s never “just a headache” or “dizzy spells.” Migraine attacks are much more complex than many realize. Learning to manage migraine symptoms is also the key to preventing other comorbidities (the presence of two or more diseases or medical conditions) that are more likely to occur with a migraine diagnosis, such as anxiety, depression, insomnia, sleep apnea, and motion sensitivity, also known as motion sickness.

Steps “O-N” (planning to move on)

The final part of the ACTION plan is a simple reminder to have faith that things will get better (Steps “O” and “N”). Now granted, that’s easier said than done. While it can seem migraine takes center stage in most people’s lives, it can be managed in a way that it takes occasional precedence. This part of the plan also encourages the need to make steps toward planning a life with migraine, rather than planning life around it. While migraine is chronic, establishing an optimistic future for yourself (e.g., manageable goals, lifestyle changes, future aspirations) and a solid support system are the golden tickets to living positively with migraine.²

Drug Therapies

Experts agree that when exploring drugs to combat vestibular migraine, the treatment of vestibular migraine is not that different from treating chronic migraine. Similar to chronic migraine, vestibular migraine needs to be treated with preventive medication. The medications to treat chronic migraine are divided into four classes, but vestibular migraine includes a few categories of its own. 

The typical course of treatment for vestibular migraine follows the same trajectory as classic migraine utilizing various drug modalities. Current treatment option categories include:

• triptans
• sodium versus calcium channel blockers
• beta blockers
• antidepressants
• CGRP inhibitors
• selective serotonin reuptake inhibitors (SSRIs)

Classification of drug treatments for vestibular migraine

Other therapies

Although drug treatments tend to become the go-to approach in managing migraine symptoms, therapies used in conjunction tend to provide another layer of protection and assurance.

Clinical trials have examined several types of therapies that have been used to treat vestibular migraine but are not limited to:

• psychometric physiotherapy
• cognitive behavioral therapy
• physical therapy/vestibular rehabilitation.

Psychometric physiotherapy

Psychometric physiotherapy is a type of rehabilitation therapy in which the client works with a physiotherapist in order to better manage their condition.¹⁷ 

Sessions typically follow a client-centered therapeutic approach where the patient takes control over their healing as the therapist creates an atmosphere of safety and non-judgment.

Cognitive Behavioral Therapy

Cognitive Behavioral Therapy, or CBT, has been an effective therapeutic approach that has been utilized across a breadth of topics in mental, physical, and emotional health. CBT combines both a cognitive and behavioral focus to develop healthy self-esteem, behaviors, personal coping skills, problem-solving, and regulation of emotions in the face of personal adversity. 

Previous studies have cited CBT as an effective therapy to use simultaneously with drug modalities in the treatment of migraine.⁵ 

Both CBT and psychometric physiotherapy allow for honest, open forums between the therapist and client about the emotional struggles that come from managing migraine/vestibular migraine.

Vestibular rehabilitation

Vestibular rehabilitation, or vestibular rehabilitation therapy, on the other hand, demands more physical actions on the part of the patient. Vestibular rehabilitation is a type of physical therapy that specializes in treating or improving the symptoms that surround vestibular disorders, such as dizziness, vertigo, visual disturbances, and refining balance and posture.¹⁸ 

This type of therapy usually is administered by a physical therapist by referral from a physician. The outcomes of sessions are dependent on the type of vestibular symptoms present. Thus, the length and overall prognosis of the sessions could span months to years in some individuals. Similar to traditional physical therapy, the therapist utilizes different procedures to address the patient’s concerns and will require the patient to practice building their new skills with at-home exercises. Examples of the typical procedures in treating vestibular symptoms include but are not limited:

• lempert maneuver 
• gaze stabilization exercises     
• otolith repositioning maneuvers¹⁸

Most people don’t consider physical therapy when trying to find a viable solution to abating their vestibular symptoms. Dr. Teixido elaborates further on the purpose and benefits of incorporating physical therapy into a vestibular migraine treatment plan:⁵

Aside from rehabilitation, medication, and therapeutic approaches, there are more cost-effective treatment options for vestibular migraine patients to access to decrease the number of episodes and severity of their symptoms.

Exercise

If the sage old advice of partaking in exercise isn’t ringing a dead, broken bell, it’s only because clinical data has proven its whole body benefits. In terms of neurobiology, exercise has been proven to desensitize the brain to certain stimuli.² While it may seem counterintuitive for vestibular migraine patients to engage in movement as a part of migraine management, in fact, engaging in moderate to high-impact exercises should not be discounted. Exercises such as jogging, running, cycling, hiking, playing various team sports, and many others are commonly cited as triggers in those with vestibular migraine, and, especially among those who are also diagnosed with exercise-induced and/or heat-induced migraine. However, the benefits of engaging in this level of exercise far outweigh the cons. Movement can release endorphin-inducing benefits.

Popular, low-impact exercises to consider are yoga, Tai Chi, walking, and vestibular therapy.² It has been noted that people who suffer from vestibular migraine may find it difficult to engage in yoga or pilates due to certain head movements. 

Adriane Dellorco also has some advice about how to avoid triggering a vestibular attack during an exercise routine:¹⁰

Experts have noted that there are ways to abate the negative side effects of exercise, specific for migraine patients. 

These techniques include but are not limited to: 

• Performing warm-up exercises before engaging in moderate to high-impact activities.
• Scheduling exercise routines at cool points in the day.
• Exercising in shaded areas.
• Staying hydrated before and after exercising.
• Being mindful of your limits; pushing oneself with caution. 
• Consulting with a physician to determine whether or not moderate to high-impact aerobic exercises will be beneficial.   

Neuroplasticity training

In the same vein as vestibular therapy, there are talks among experts about whether or not neuroplasticity training could provide some additional support in improving patient quality of life. Neuroplasticity refers to the brain’s potential to grow, change, and rewire itself. For example, engaging in everyday tasks such as learning a new skill, seeking positive social interactions, participating in novel experiences, taking up an exercise routine, and practicing mindfulness are all examples of neuroplasticity as they help establish and build neural connections. 

Clinical neuroplasticity training is different. It shares some overlap with vestibular therapy; however, its aim is to help patients at the cellular level by creating and restructuring neuronal connections to improve cognitive functioning, decrease chronic pain signals, and help improve neural pathways to achieve better mental and physical health. This type of therapy can also help decrease sensitivity to vestibular stimuli that could contribute to dizziness and balance problems.²  The targeted area of study in the brain is the limbic system, and more specifically, the amygdala. The idea is that the limbic system is involved in the “fight or flight” response to certain emotional stimuli and past negative experiences can create, within the pathway, overactive neural signals of chronic pain.¹⁹ The goal of this therapy is then to rewire, at the neural level, how the limbic system responds to negative triggers to decrease chronic pain levels. 

Other methods of treatment

There are new treatments developing outside the realm of drugs and therapy. A prime example of this are electronic neuromodulation devices. There are currently four neuromodulating devices on the market:

These devices are great options for patients who have exhausted medication options or who show sensitivity to certain medications. Each of these devices shows promise and works to stimulate different cranial nerves to block pain signals. 

Outlook/Prognosis

Although living with a chronic disease as debilitating as migraine can seem like a lifelong burden, there is a break in the storm clouds. The field of migraine research is an ever-changing landscape with many advancements being made every year. Studies are also being replicated to better answer the questions that plague researchers as well as patients. The path to understanding migraine, in all its tangled web of complexity, is being studied now more than ever. It’s truly a time to feel hopeful, especially for vestibular migraine patients.

Dr. Beh offers a ray of hope to those seeking an end to their debilitating symptoms.²

While finding a permanent solution to vestibular migraine, and chronic migraine in general, is still in development, it is reassuring to know that it might be on the horizon. There are many chronic and debilitating conditions, but none are as misunderstood and stigmatizing as chronic migraine, which the general consensus considers a “silent disease.” With every demographic being susceptible, it makes the  name silent disease all the more disheartening. But, as always, the more awareness raised, the greater the quality of living for those who are waiting for the day they can finally rid themselves of their symptoms and bring order back into their lives.

Additional Resources

• • Migraine Associated Vertigo Support Group (Facebook)
  • Migraine Community Groups
  • Move Against Migraine (Facebook)
  • The Daily Migraine (Facebook)
  • Headache Impact Test
  • Migraine Disability Assessment Questionnaire (MIDAS)
  • Coalition for Headache And Migraine Patients [CHAMP] (USA)
  • American Migraine Foundation (USA)
  • Association of Migraine Disorders (USA)
  • National Headache Foundation (USA)
  • Patient Advocate Foundation (USA)
  • Work Accommodations for Migraine

Individuals with and without migraine share a fundamental need for meaningful experiences and deep connection. While these ideals may be attainable to the status quo, people with migraine may be deprived of these core needs due to the stigma surrounding migraine.

Support, validation, and feelings of purpose and contentment strengthen our identity to self and community. Without these basic needs, becoming empowered and visible members of society becomes a goal, not a reality.

What is Stigma?

Stigma refers to the harmful labeling, stereotypes, biases, judgements, and prejudices that become attached to a certain group of people based on a diagnosis or trait, and in this case, migraine.^{1 8} It is a socially and culturally informed process, fueled by the constructs, values, and beliefs given at a specific place in time.

Migraine: A Stigmatized Disease

Contrary to public perception, migraine is a major public health issue with extensive impacts, both personal and economic.

• One billion people worldwide have migraine.¹
• Migraine costs $30 billion a year in healthcare costs and productivity.¹ 
• In 2016, migraine was the second leading cause of global disability and neurological disease burden.²

Migraine is real, migraine is pervasive, and the people who have migraine matter.

Underrecognized, Underfunded, and Misunderstood

Despite these realities, the world at large remains tethered to false, outdated, and sexist perceptions of migraine, complacently allowing further stigma to ensue. As a result, stigma has extensively infiltrated and dictated migraine recognition, diagnosis, and treatment.^{3 4 5}

Consequently, people with migraine are commonly subjected to societal disproval and discrimination. They may be forced to navigate environments unwilling to accommodate their needs which are deemed insignificant. This lack of visibility and validation spoils identity, leaving those with migraine with marred personhoods and diminished social connections. In conjunction with the trivialization of migraine that occurs within social systems, medicine, and legislation, it is widely reported that migraine is underrecognized, underfunded, and misunderstood.^{2 5 8}

Measuring Migraine Stigma

The Stigma Scale for Chronic Illness (SSCI) is used to assess stigma among people living with chronic illnesses. Utilizing this assessment, chronic migraine was shown to have more stigma than epilepsy, which had a score similar to that of episodic migraine.^{20 25}

Types of Stigma

Migraine does not exist in a vacuum. At the interface of migraine and society exists stigma.⁸
Layered over time and filtered through cultural lenses, stigma permeates society, and influences our thoughts, feelings, and actions. Due to its pervasive nature, there are three types of stigma:¹

• Structural stigma
• Public stigma
• Self-stigma

Contributing Factors of Stigma in Migraine

Marginalization and Dismissal

Migraine is an equal opportunity disease—all ages, ethnicities, abilities, and socioeconomic classes can have migraine. However, due to racial disparities and lack of access to care, migraine disproportionately affects more Black, Indigenous, and People of Color (BIPOC) as compared to white people. Despite this, BIPOC are often excluded from research and discouraged from seeking help.⁷

Racism

Minorities’ pain is often not validated or respected. The notion that BIPOC can tolerate pain better than white people can be traced back to slavery. Minimization and suppression of pain was expected when being auctioned, as smiling through physical abuse made slaves more auctionable. This psychology still exists within the healthcare system, and BIPOC are more likely to be stigmatized.⁷

Cultural Differences

Cultural scripts can dictate acceptable expressions and communication of pain. Some cultures value stoicism and encourage silence when experiencing pain. The resulting cultural dissonance between patient and physician increases the likelihood of dismissal and stigma.⁷

Validity of Migraine as an Invisible Illness

Migraine is an invisible illness on two levels:

• It cannot be seen by others.^{1 2}
• Labs or scans cannot provide proof of its existence amongst patients.^{1 2}

Symptom-Based Diagnosis

Diagnosis of migraine is symptom-based and dependent upon patient evaluation. Neuroimaging or biomarkers cannot confirm a diagnosis, and though it is disabling, migraine’s invisible nature often leads others to disregard it as a valid disability. ⁸ As a result, many fail to validate its presence, and assume those with it must be fakers. ⁹

Denial of Migraine

The denial of migraine as a legitimate disease is central to the stigmatization of migraine.² Without tests to justify migraine’s impacts, patients become responsible for providing the “proof”. As a result, migraine’s validity falls on the character of patients, and specifically their character flaws.¹⁰

Blaming Migraine on Character Flaws 

Because migraine is viewed as a minor personal issue rather than a legitimate disease, the people with migraine are often judged as having character flaws which are to blame for their affliction.¹¹ The dialogue therefore shifts from a framework of disease to one of blame, influenced by stereotypes and misinformation.^{10 11 18}

Stereotypes and Misinformation

Negative stereotypes of migraine discredit the reality of the disease and the challenges faced by those experiencing it.

Common stereotypes attached to people with migraine and the resulting statements made include:¹¹

• Lazy
  • “What an easy life you have staying in bed all day.”
• Complainers
  • “When I don’t feel good, I still go to work. It’s what you do.” 
  • “Stop complaining, you should just be grateful.”
  • “It could be worse.”
• Overly sensitive or weak
  • “You’re just too sensitive, you need to toughen up.”
  • “Why can’t you just do [insert activity]? It’s not that hard.”
  •  “Well, you still have to do [insert activity].”
• Drug seekers incapable of coping with pain
  • “If you can work, it must not be that bad.”
• Fakers who overexaggerate
  • “That’s your excuse for everything.”
• Neurotic and excessive worriers
  • “Mind over matter, right?”

In addition, online representations often depict migraine as an “annoyance.” Google searches of migraine show adults, mainly women, simply touching their heads and wincing in pain. This depiction is rarely the reality, and it reinforces inaccurate stereotypes that minimize migraine.²

Other media representations use migraine as a metaphor for devaluation, comparing annoyances or stressful events to being a “migraine” or “headache”.²

Gendering Migraine

The genderization of migraine has contributed to its delegitimization and subsequent stigma. In the past, historical narratives and pharmaceutical advertisements have contributed to sexist attitudes towards migraine, downplaying its severity and placing blame on the individual experiencing migraine.¹¹

Historical Perspective

Migraine stigma has changed throughout the centuries, reflecting the beliefs, attitudes, and values of society. 

Throughout the 16th- and mid-17th century, migraine was treated as a legitimate disease, bolstering its existence within the medical sphere and garnering compassion and effective treatments (for that time period).¹²

During the 18th and 19th centuries, public perception of migraine transformed to a more gendered illness, one experienced primarily by poor, exhausted women, and scientific and intellectual men.¹² 

This transformation from legitimate disease to minor affliction continued into the 20th century, which ushered in the rise of “migraine personality.” This “type A” personality categorized migraine as a character flaw held by highly sensitive, elite women (often housewives) who overthink and worry excessively.¹¹ 

Freud even postulated women’s uncontrolled impulses were to blame for migraine attacks. Consequently, those with migraine were treated as being hysterical, and the doctors who treated them “enablers”.⁵

Role of Pharmaceutical Industry

The “Typical Migraine Patient”

When marketing migraine treatments, some pharmaceutical companies have portrayed the typical migraine patient as a white, privileged, professional, upper-middle class woman with children. Specifically, these advertisements emphasize this woman’s inability to care for her children during a migraine attack.¹¹

Misrepresentation

While this scenario may ring true for some, it is not the epitome of, nor does it do justice to, the migraine experience. 

By fixating on white women as the primary target, i.e., gendering migraine, the pharmaceutical industry has unilaterally misrepresented the migraine community, both in identity and experience. Marginalization of BIPOC and lower-income patients reinforce the notion that migraine only afflicts white women of a certain class. This exclusion and biased perception perpetuates stigma and discrimination.¹¹

Silence Perpetuates Stigma

When faced with structural, public and self-stigma, nondisclosure is the unfortunate consequence experienced by many.¹³ While this silence may be an impact of stigma, it is also a cause, yielding a Catch-22 situation.

Summary
What Causes Migraine Stigma?

Migraine stigma is caused by a variety of factors, all of which are tied together by dismissal and a lack of validity.

Because migraine is an invisible illness and diagnosis is symptom-based, many do not view migraine as a legitimate disability. Blaming migraine on perceived character flaws (being neurotic, weak, lazy, overly sensitive) compounds this issue of denial and reinforces negative stereotypes.

Misrepresentation in the media (such as pharmaceutical ads) excludes BIPOC, who often experience dismissal due to racism and cultural barriers.

Fear of rejection and shame may prevent people with migraine from speaking up, and the silence and nondisclosure that result further perpetuates stigma.

Impacts of Migraine Stigma

Increased Disability

Psychological Distress and Nondisclosure

Stigma Silences

Self-stigma negatively affects self-esteem and mood, and triggers a hiding reflex in individuals with migraine so as not to expose the parts of themselves of which they feel ashamed.^{1 14}

Guilt, self-blame, and fear of rejection compound these feelings and discourage individuals with migraine from speaking out, resulting in silence and nondisclosure.^{4 10 13 14}

Isolation

When enacted, stigma devalues and isolates those with migraine.⁸ Exclusion within social circles has negative impacts on individuals who are already forced to retreat due to repeated migraine attacks.

The subsequent discomfort with being one’s true self depletes energy and increases disability.¹¹

Lack of Visibility and Validation

People with vaginas are often not believed or heard when sharing their experiences with migraine, and this contributes to the lack of visibility and validation experienced by people with migraine.^{15 16}

Worsening of Migraine

Due to self-stigma, some people with migraine may not feel comfortable seeking a diagnosis or treatment. As a result, migraine may worsen.³

Delays in Treatment

On average, it takes 18 months to receive a correct diagnosis. Within this time frame, upwards of $12,000 may be spent in health care costs, not including work-related expenses.³

Incorrect diagnoses and inappropriate medications make treating migraine more difficult. Without support, migraine may worsen, as delays in treatment make migraine harder to manage.³

Cultural Barriers

In addition, cultural barriers may affect the relationship between physician and patient, making it more difficult for BIPOC to feel connected and heard within the healthcare system. Consequently, trust becomes harder to build, and BIPOC experience obstacles in receiving diagnosis and treatment.⁷

Structural Inequities 

Workplace Discrimination

Did You Know?

A diagnosis of migraine colors the professional opinions of employers—4 out of 5 employers thought migraine was an invalid reason to call out from work.⁸

Lost Jobs and Increased Employer Costs

Ninety percent of people with migraine cannot continue working during an attack, and the remaining 10% who do continue are only half as productive.¹⁰

Without appropriate accommodations and support in the workplace, people with migraine may experience a worsening of migraine or may need to quit altogether.¹⁰

Both possibilities are costly to employers, whether it be through increased health care costs, or an increased need for recruiting, training, and hiring—all of which decrease morale and productivity.¹⁰

Did You Know?

Thirty four percent of individuals with migraine have experienced discrimination or hardships at work due to stigma.²¹ 

Legislative Gaps

Underfunded

Stigmatized disorders receive less funding than non-stigmatized disorders. Consequently, migraine receives a fraction of research funding relative to its impact in disability adjusted life years (DALYs). DALYs are a measure of disease burden assessing years of life lost due to disability and mortality.^{2 11}

Comparatively, arthritis, breast cancer, and digestive diseases all have similar DALYs as migraine. As of 2015, these diseases received appropriate funding relative to their impact: $214 million, $674 million, and $1.6 billion, respectively. Migraine, on the other hand, only received $20 million.² 

Limited Research

Without proper funding, less research can be conducted, and without research new medications cannot be developed.²

Fewer clinicians may view migraine research as a successful career option, limiting the number of research scientists advancing migraine care, which further shunts migraine awareness.^{2 8}

Barriers to Care

Lack of Specialists

Due to a lack of available research grants, medical students and residents may feel hesitant entering a field with slim prospects of a successful career.²

As a result, there are fewer than 700 certified headache specialists available to treat the 55 million Americans with migraine.‌‌²⁶

This lack of appeal is even exchanged amongst established physicians, who may view headache medicine with condescension, holding a “courtesy stigma” towards the physicians who treat migraine.²

Furthermore, without adequate funding, publicly funded laboratories, which invent two-thirds of new migraine medications, are not able to discover new medications.²

Did You Know?

Medical students generally only receive a few hours of education in headache medicine. Exposure to headache cases often does not occur until clinical training, most likely in the third or fourth year.²²

Coverage Impediments

Structural stigma discriminates against people with migraine through unfair policies, causing coverage impediments.²

For instance, receiving medication or treatment can be more difficult for people with migraine due to unfair insurance policies governing migraine.⁴

In addition, there is currently no listing for migraine in Social Security’s Blue Book, despite being the second leading cause of global disability. As a result, applying for Social Security disability benefits is more difficult for people with migraine.^{2 8}

Did You Know?

Migraine has existed for centuries, but criteria for diagnosis didn’t exist until 1989.³

Lastly, employers may not acknowledge migraine’s severity and impact, impeding the process of applying for worker’s compensation.² 

Summary
What Are the Impacts of Migraine Stigma?

Individuals with migraine exposed to stigma may experience increased disability and psychological distress. Shame and isolation may prevent people with migraine from speaking up and seeking treatment, which can worsen migraine. 

Structural stigma results in structural inequities. Workplace discrimination and a lack of accommodations put individuals with migraine and employers at risk for lost jobs and increased costs. Lack of research funding and specialists in the headache field limit the development of new medications and treatments, and unfair policies create coverage impediments and barriers to care.

Combating Stigma in Migraine

Advocacy

Due to stigma’s silencing effects, advocacy necessitates courage. ^{1 8 11} Effective advocacy is rooted in empathy and is patient, not pharmacy, led.^{11 14 18}

Disclosure

Disclosure within healthcare settings helps establish an honest relationship between patient and doctor, and transparency aids physicians in choosing the most appropriate treatment for each patient. ⁴ 

Likewise, disclosure at work benefits the person with migraine in the following ways:

• It makes employers aware of migraine.¹⁰
• It gives employers the opportunity to provide accommodations.¹⁰
• It allows employers to be more understanding of any migraine related absences.¹⁰

Language

In order to stamp out migraine stigma, we must change the language used to describe it.¹⁰

Validating the Person with Migraine

“…Disentangle migraine from personhood, so I suggest we talk about people having migraine. Let’s not talk about migraine sufferers, let’s not talk about ‘migraineurs”, let’s talk about people who have migraine. We’re full human beings with lots of interest, lots of things we do in our lives, and we have migraine.”¹¹

Appropriate language should acknowledge people with migraine as human beings first and foremost. Extracting migraine from personhood to reveal and celebrate the humanness of each person with migraine will lay a foundation of basic human dignity and respect.^{11 18}

Validating Migraine as a Disease

”We tend to define words by how we use them. If two-thirds of the time the word headache means annoyance, and we associate the word migraine with headache, then migraine becomes a different annoyance.”²

Language chosen that will acknowledge and validate migraine as a legitimate disease is fundamental to breaking the stigma.² The Coalition of Headache and Migraine Patients (CHAMP) offers the following guide to facilitate validation through language:²⁴

Education

In order to become better advocates, people with migraine and their supporters must understand the disease. Educating yourself and others allows us to build more effective and articulate dialogue.^{4 14 18}

One avenue worth considering is social media, which offers a substantial influx of information and support. It facilitates a sense of community and growth, and online support groups establish camaraderie among fellow migraine patients.¹⁷

Reframing Migraine

People with Migraine

In order to establish migraine as a legitimate disease, those with it must be acknowledged appropriately. Common labels circulating society devalue and isolate those with migraine. A new script is needed—one that validates the true experience of migraine and acknowledges those with migraine as strong and heroic.⁶ One with migraine could be likened to a warrior—a “migraine warrior”—i.e., strong individuals who display bravery and perseverance in the face of disabling disease. 

Furthermore, people with migraine can rewrite their own perception of their experience. Relinquishing self-blame and guilt allows the individual with migraine to embrace compassion and acceptance for themselves and others with migraine.⁶

Physicians

Sharing how migraine impacts a patient’s life takes tremendous courage and authenticity, especially when instances like these may have been met with disbelief and invalidation in the past.¹¹

Doctors should be sensitive to the lifetime of stigma their migraine patients may have endured. Listening and believing that their pain is real will help reframe physician’s perception of migraine, which will help break the stigma.¹¹

Pharmaceutical Industry

The pharmaceutical industry strongly influences migraine perception through medication advertisements.¹¹

Advertisements highlighting the diversity within the migraine community, as well as the spectrum of impacts people with migraine face will assist in reframing migraine.¹¹

Likewise, a more realistic portrayal of the lived experience of migraine can help guide others in viewing migraine with a more compassionate and understanding lens. Doing so will allow people with migraine to be their authentic selves.¹¹

Legislative Action

Receiving increased visibility from government entities combats stigma by establishing migraine as a legitimate disease worthy of federal government attention.⁸

In order to boost migraine visibility at the structural level, Congress must allocate more funds to the National Institutes of Health (NIH) for migraine research. By doing so, headache medicine will garner more interest from doctors and researchers, which will grant people with migraine better access to care.^{2 11} As a result, migraine will have a greater presence in medical curricula, and neurology departments will seek more headache specialists.^{2 11}

Summary
Combating Migraine Stigma

Advocacy is key. Patient participation and community involvement can challenge stigma and reframe migraine as a legitimate disease worthy of visibility, validation, and federal government investment. 

Speaking up and educating others increases awareness and challenges stereotypes and misconceptions. Mindfully choosing language that validates both migraine warriors and the disease itself will garner more respect, compassion, and empathy for the migraine community.

Legislative action and policy reform will provide increased structural support in the form of research and medications. 

Looking Ahead: Destigmatizing Migraine 

Advocacy in the Community

Those with migraine who are comfortable advocating can begin in smaller settings amongst family, friends, neighbors, and coworkers. Doing so will increase visibility in social circles, and others will be more apt to offer validation.¹⁸

Helpful tips to keep in mind include:

• Honesty and openness: Self-advocacy can be as simple as sharing how one truly feels when asked “how are you?” By honoring and expressing your needs, it helps others to understand migraine’s impacts. Sugarcoating a true experience in order to avoid discomfort may mislead the general public and strip those with migraine of social support.¹⁸
• Have resources available to share with others: Unfortunately, honest expressions may fall on disbelieving ears. In these cases it’s helpful to have a list of websites available to assist others in understanding migraine disease.¹⁶
• Non-combative and non-accusatory: It’s especially important to steer any justified emotional reactions toward advocacy. Remaining objective and non-accusatory will help communicate messages more clearly. By creating a welcoming and nonjudgmental space for others it allows them to reevaluate their biases and preconceived notions.¹¹

Self-advocacy can be frightening, especially when past attempts have been disregarded. Not feeling ready or able to advocate is completely valid and should be honored.¹¹

Advocacy at Work

Gaining accommodations in the workplace simultaneously acknowledges migraine’s impacts and increases productivity.¹⁰

Key points to keep in mind when disclosing migraine to employers:

• Disclosure in writing is preferred.¹⁰
• Disclose as soon as possible.¹⁰
• Keep documentation of what was exchanged between employer and employee, as well as dates.¹⁰
• Informing employers of any known triggers and/or worsening of migraine attacks will help maintain transparency.¹⁰
• Provide a doctor’s letter or medical records to aid this process.¹⁰

Advocacy in the Government

The United States Federal Government is the largest funder of biomedical research in the world.¹¹ Members of Congress are responsible for the allocation of funds to the NIH, who in turn fund public research laboratories.^{2 19}

Lobbying members of Congress to allocate more funds for migraine research will allow public research laboratories to perform more research and discover new migraine treatments.²

Bottom Line

Stigma is a serious problem with significant personal and structural impacts. To the detriment of the migraine community, stigma has warped public perception of migraine with sour representations and negative associations, discrediting both the experiences and identities of individuals with migraine. 

Despite these impacts, stigma can be addressed and challenged through advocacy and patient mobilization strategies. Speaking up and raising awareness is key to affecting communal and legislative change. With proper research funds and increased visibility and validation, destigmatizing migraine is possible.

 

FAQs