The impact of living with migraine disease in Aotearoa New Zealand

Migraine disease is a complex neurological condition diagnosed using reported symptoms and the criteria of the International Headache Society’s International Classification of Headache Disorders (ICHD) (3rd edition).¹ It is estimated to affect one in seven people globally,² and affects two to three times as many women as men.³ From the 2016 and 2019 Global Burden of Disease studies, migraine is the second highest cause of “years of life lived with disability” (YLD) worldwide, but the top cause of YLD among people aged 15–49 years old.⁴ In Aotearoa New Zealand, it is estimated that 642,000 people have migraine.⁴ Prevalence of migraine is similar for Māori, Pacific peoples and NZ Europeans (15.7%, 16.0% and 14.4% respectively).⁵

Migraine is classified as episodic or chronic, depending on attack frequency. Episodic migraine is defined as having up to 14 headache days/month. In 7–9% of people with migraine, the disease becomes chronic, where headache occurs on 15 or more days a month, for at least three months.^6,7

Disability from migraine can be measured using tools such as the Migraine Disability Assessment Scale (MIDAS), which uses a set of questions to assess the impact of migraine on daily life. These tools demonstrate the significant impact of migraine on nearly all aspects of life, including employment, education, household work, social and family life, with people with chronic migraine experiencing the highest level of disability.⁸

Little research on the impact of migraine has been undertaken in Aotearoa New Zealand. From the Dunedin Multidisciplinary Health and Development Study in 1998–1999, participants at age 26 were asked about headaches in the last 12 months and 72 (7.3% of the sample) fulfilled the ICHD criteria for migraine. For 39% of these individuals, headache impaired their ability to work “quite a lot” to “very much” and 42% reported a similar high interference with social activities.⁹ No further research on the experiences of people with migraine in Aotearoa New Zealand has been published.

To address this gap, Migraine Foundation Aotearoa New Zealand (MFANZ), a charity with the mission of raising awareness of migraine disease and supporting people living with migraine in Aotearoa New Zealand, undertook an online survey in 2022: the Migraine in Aotearoa New Zealand Survey (MiANZ). The aims of this paper were to describe the impact of migraine disease on wellbeing and daily life, using data from the MiANZ survey. Our research questions were:

• How does migraine disease affect people in Aotearoa New Zealand?
• What can be done to mitigate the impact of migraine in Aotearoa New Zealand?

Methods

Study population and recruitment

Participants included anyone with migraine living in Aotearoa New Zealand. The survey was promoted through MFANZ social media and networks, including Health Navigator (now Healthify), Neurological Foundation and New Zealand Pain Society. A link to the survey was placed on the MFANZ website and media articles publicised the survey (GP Pulse, Scoop). From an initial 579 responses, four duplicates were removed. An additional 33 responses were removed as they answered <6% of the survey and did not contribute substantively to the research questions.

The final dataset included people with either a positive Migraine Identification test (ID-Migraine test^TM)¹⁰ (n=513) or who reported being diagnosed with migraine by a health professional (n=17). A positive ID-Migraine test^TM (answering “yes” to at least two of three questions about migraine symptoms) has a sensitivity of 84% and specificity of 76% for migraine.¹¹

Survey development, content and delivery

The survey was developed using existing questions where possible: the five question MIDAS,¹² impact on work,¹³ other long-term health conditions (including anxiety and depression) and socio-demographic questions (age, gender, ethnicity, employment status) as used by Statistics NZ and Manatū Hauora – Ministry of Health (questionnaire in Appendix). A question on number of headache days per month identified people with chronic and episodic migraine—six respondents who were unsure or didn’t know were classed as “episodic”.

The MIDAS was scored as follows: mild disability (6–10), moderate disability (11–20) and severe disability (>20). Due to an unforeseen error in the survey, question 4 of the MIDAS was omitted, meaning that the MIDAS scores will underestimate the true disability of respondents.

The survey was delivered online via SurveyMonkey and piloted by six people, most of whom had migraine disease. The survey ran from 22 August 2022 through to 7 October 2022.

Ethical approval was granted by the University of Otago Human Ethics Committee (Ref: D23/156). Information about the survey was provided on the front page; hence, informed consent was inferred by participation in the online survey.

Data analysis

A mixed-methods approach to analysis was used. At the close of recruitment, survey data were exported into Microsoft Excel for cleaning, collation and analysis. Selected demographic data were re-coded (e.g., age-bands, gender, ethnicity). We prioritised ethnicity (Māori, Pacific peoples, Asian, NZ European/Other) for anyone who reported more than one ethnic group. For quantitative data, response frequencies were tabulated with number and percentages calculated where appropriate. Only descriptive statistics were used, due to the self-selecting nature of the sample.

Responses to each free-text question in the survey were initially coded separately, but with overlap between codes across questions; the second stage of coding involved creating themes across questions. Final coding formed a combined dataset of themes.¹⁴ This resulted in five themes, with sub-themes in each. Quotes to demonstrate themes are accompanied by gender, age group and ethnicity of the respondent. Respondents’ recommendations for what could be done to improve their situation were categorised into actions targeting society, workplaces and the health system.

Results

Participant characteristics

Table 1 presents the characteristics of the total survey sample and for those with chronic and episodic migraine. The majority were women (82%) and NZ European/Other (77%). Most were in either part-time or full-time employment (70%), with a small number of retirees and students. Almost half of the respondents met the criteria for severe disability.

View Table 1–2, Figure 1–2.

Survey quantitative results

Although the majority (51.9%) of respondents had 7 days or less of headache a month, nearly a quarter of respondents (22.6%) had chronic migraine, experiencing headache on 15 or more days a month. Of those with chronic migraine, 20% had continuous or nearly continuous headache (4.5% of all respondents) and another 22% had 24 or more days of headache per month (4.9% of all respondents).

Respondents were asked questions (as per the MIDAS) about how often migraine impacted their everyday life. Figure 1 shows that half of respondents hadn’t been able to do household work, nearly a third had missed family, social or leisure activities and over a quarter had missed school or work on more than five days in the last three months.

Respondents were asked to indicate the impact of migraine on work (Figure 2). Very few of those with chronic migraine reported no impact. The impact of episodic migraine on work was less, although over a third were working full-time but at less than their best performance. This is consistent with the higher rates of unemployment and lower rates of full-time employment reported by those with chronic migraine in Table 1.

Survey qualitative results

Free-text data came from three open-ended questions: “What could be done to improve your life with migraine?”, “Is there anything else you want to tell us about living with migraine in New Zealand?” and a free-text question at the end of the MIDAS. These questions were answered by 437, 254 and 67 respondents respectively.

Themes were identified under the following headings: “physical impacts”, “mental health impacts”, “impacts on work (paid/unpaid)”, “impacts on social connection” and “impacts of trying to find a cause or cure”.

Physical impacts

Respondents spoke of significant levels of pain, which could last for hours or days. Pain was likened to no other, prompting thoughts of extreme measures to seek relief.

“People don’t understand the excruciating pain and think ‘it’s just a headache’. I’ve pondered if I could just cut my own head off to make it stop.” – 45–54 years, Female, NZ European/Other, 668

“Recently I broke my elbow. That was very painful. The migraines I experience are significantly more painful than breaking my elbow. Migraines are also significantly more disruptive to my life than not being able to use one of my arms. If I could cut off one of my arms and never experience migraines again I would do it in a heartbeat.” – 35–44 years, Male, NZ European/Other, 149

Migraine attacks include other physical symptoms, which can be as debilitating and distressing as the headache. Respondents reported loss of coherent speech, paralysis on one side of the body, auras (visual disturbance and even loss of vision), pins and needles, sensory sensitivity (photophobia, phonophobia) and nausea with or without vomiting.        

“My symptoms can sometimes make me look like I’ve had a stroke because I can’t talk or walk properly, with pain so severe I am beyond crying.” – 45–54 years, Male, NZ European/Other, 355

Mental health impacts

The effect of migraine on everyday activities could lead to anxiety and depression, with words such as “misery”, “devastating” and “ruining life” used to describe the impact. Going without a migraine attack for short periods could invoke feelings of happiness or relief.

“It sucks. It ruins my life. It changes plans, disrupts routine, creates stress. It makes me miserable.” – 25–34 years, Female, Asian, 473         

Constant worry about when the next migraine attack was going to arise and how that would impact planned events could induce high levels of anxiety. Participants used combat terms such as “threat”, “attack” and “live in fear”, giving migraine disease an enemy-like persona, something to be battled against, or to be fearful of, making living with migraine possibly akin to “shell shock” or post-traumatic stress disorder.

“I think sometimes the fear of a migraine is the worst … I have no one to call to drive me to the doctor for an injection when I am really ill, and I end up in bed all day in extreme pain … as a single mother it makes me feel very vulnerable.” – 45–54 years, Female, NZ European/Other, 097

Those living with chronic migraine describe only living half a life, feeling isolated, trapped, lonely and useless.

“The toll migraine headaches take on a person’s mental health is devastating and severely overlooked. You feel useless and worthless because you can’t provide.” – 35–44 years, Female, Māori, 461

Impacts on work (paid and unpaid)

Many people noted their inability to work or study, or reduced ability to work due to migraines: “unable to work”, “I don’t work or study at the moment”, “not able to work because of them”, “I don’t work now because of my migraines”, “haven’t worked for a year, too many migraines”, “I had to quit my job 2 years ago”. As well as the obvious reasons for not being able to work (frequency of migraines and needing to lie in bed for days), the negative impact of migraine on cognition and fatigue also reduced people’s ability to function productively at work.

“Don’t work. Migraines interfere with cognitive function almost daily.” – 45–54 years, Female, NZ European/Other, 116

Those who did work spoke about being “lucky” to have flexible work schedules, reducing work hours to accommodate migraine or choosing work where regular attendance was not required. A cycle was noted of pain limiting the ability to work, trying to keep working despite impairment and then using any spare time to catch up and recover. Some people relied on acute medication to continue working.

“I have so much pain regularly and I still have to show up and drug up. I was in a senior executive job and would push through until the times I couldn't and then I would be in bed for 3 days in the dark.” – 45–54 years, Female, NZ European/Other, 599

As well as impacting paid work, people talked about the effects on household tasks, parenting and being a responsible partner. They worried about the impact on other family members, with partners having to do extra and children being affected.

“I have had to give up my job. I can no longer drive. I don’t cook. I often can’t bathe. I rarely do any housework. I’m dependent on my partner for everything.” – 45–54 years, Female, NZ European/Other, 963

“I can’t imagine how single parents with migraines cope!! It affects the state of one’s house. It’s just impossible to keep up with housework. It restricts your children’s lives.” – 45–54 years, Female, NZ European/Other, 116

Impacts on social connection and time

A common theme was respondents’ lack of ability to commit to social events and feeling like they were letting people down when migraine attacks kept them at home.

“I don’t tend to make plans to do things because I can hardly ever follow through.” – 25–34 years, Another gender, NZ European/Other, 759

The concept of migraine “stealing life away” was common. People talked of “lost days to migraines” and time you can never get back. The days lost to migraine attacks were also a hindrance to social contact, as good days were spent catching up on work or activities that were unable to be completed on migraine days. Avoiding triggers (lack of sleep, alcohol, places with bright lights, noise or strong smells) interfered with the ability to attend social occasions when these triggers were an integral part of socialising.

“I rarely socialise because if I don’t have a migraine, I’m catching up on all the things I’ve neglected when I’ve been experiencing one…” – 45–54 years, Female, NZ European/Other, 116

Impact of trying to find a “cause” or “cure”

People spent a significant amount of effort, time, research and money trying to find a cure, or something that would reduce the frequency or intensity of migraine attacks. They struggled with potential triggers, which could be overwhelming and often fruitless, when triggers could not be consistently identified or avoided. The time and financial investment into activities and therapies to “get better” or at least maintain a level of wellbeing could be prohibitive and restrictive.

“It’s expensive—privately funding CGRP meds [calcitonin gene-related peptide, new medication not currently funded in New Zealand] or having to give up work … Plus physio, psychologist, supplements.” – 45–54 years, Female, NZ European/Other, 823

“I had a decade of experimenting to find food triggers that were never identified. In the end I gave up, figuring why add misery to pain.” – 55–64 years, Male, Māori, 706

How to improve life for people with migraine

Survey respondents were asked to comment on “What could be done to improve your life with migraine?”. Responses were grouped into suggestions for what would help at a societal level, in workplaces and the health system (Table 2).

Discussion

People living with migraine in Aotearoa New Zealand reported significant levels of migraine disability and impacts on all areas of life. Impacts were particularly pronounced for people with chronic migraine who experienced higher levels of disability and more restrictions on employment. For all respondents, impacts on household chores, family, social or leisure activities and work/study were pronounced.

From the qualitative data, impact went beyond dealing with the physical pain and other symptoms associated with migraine attacks, and affected mental health, social connections and ability to work. Other impacts included the financial and time burden of researching and accessing treatments and therapists who might offer a “cure” or at least help with minimising the intensity or frequency of migraine attacks.

The themes identified in this study are similar to those found in a systematic review of psychosocial difficulties of people with migraine,¹⁵ which included general physical and mental health, pain, fatigue, emotional problems, difficulties at work, social functioning and global disability.

People with migraine commonly state that they would be better partners and parents without migraine and report a reduced ability to do household chores, missed family or social activities and negative impacts on parenting.^16,17 Studies consistently show that migraine affects family, partners and children of people with the disease.¹⁸ These impacts were also noted by our survey respondents.

Research from a large longitudinal survey of people with migraine in the US found that those with chronic migraine were less likely to be in paid employment than those with 3 or fewer headache days/month and who missed more hours of work per week.¹⁹ Many other studies report marked productivity impacts for people with migraine, which are worse for those with chronic migraine.^20,21

The impact of migraine on mental health is complex. Depression and anxiety have bidirectional relationships with migraine disease, and both are at least twice as common in people with migraine than the general population,^22,23 consistent with our findings. Comorbid mood disorders are associated with reduced quality of life and increased disability in people with migraine and can also increase the risk of migraine becoming chronic.²⁴

However, the negative impact of migraine on mental health extends beyond comorbid mental health diagnoses. The anticipatory anxiety surrounding migraine, where people fear attacks due to their unpredictable nature, is common and can cause significant distress.²⁵ Isolation, guilt and feelings of hopelessness are other emotions described in qualitative research on the impact of migraine¹⁸ and in our population.

Searching for a cause or a cure was also noted in our analysis. People with migraine want to understand what triggers their attacks, so they can avoid triggers and reduce their attacks. However, the evolving science around migraine triggers and the migraine prodrome now suggests that many factors that have previously been considered triggers (diet, emotions, environmental factors) are much more likely to be early symptoms of an impending migraine attack.²⁶ An excessive preoccupation with potential trigger avoidance can reduce quality of life and provoke anxiety in people with migraine¹⁸ and is unlikely to be effective.²⁶

This is one of the first studies to gather data about the experience of migraine in Aotearoa New Zealand. However, this is not a representative sample of people with migraine in Aotearoa New Zealand, but a self-selected, opportunistic sample recruited largely through social media and online channels, likely not frequented by high numbers of Māori or other ethnic minorities and with more severe disease than the general migraine population (e.g., 23% of respondents had chronic migraine compared to a population rate of approximately 8%).²⁴

A broad range of actions is needed to reduce the impact of migraine disease in Aotearoa New Zealand, starting with a wider societal understanding that migraine is a complex neurological condition. Poor understanding of migraine leads to stigma and exacerbates migraine-related disability.²⁷

For people with migraine who are unable to work at their full capacity, more supportive work environments could help reduce work-related stress and improve productivity. For people who are unable to work at all, recognising migraine as a disability could allow more people to access benefits and contributions towards treatment costs.

Further research is needed to understand the cost-effectiveness and other implications of some of the recommendations listed in Table 2, and to explore in detail medication use and related overuse issues.

Conclusions

Migraine is a complex, disabling neurological condition with wide-ranging physical and mental health impacts, as well as negative effects on work, social and family life. From this survey of people with migraine in Aotearoa New Zealand, levels of migraine disability were high, with the majority experiencing some limitation in work, social and family life. Greater support and awareness of migraine as more than “just a headache” is needed, both among the public and in workplaces.

View Appendix 1.