Over a billion people live with migraine worldwide, across all cultures, world regions and socioeconomic statuses, including over 700,000 in Ireland based on the current population. It is the 2nd leading cause of disability worldwide and accounts for more disability than any other neurological disorder, according to the Lancet Burden of Disease Study 2016.1 Migraine and other headache disorders are estimated by WHO to be the second leading cause of years lived with disability worldwide, the first for women under fifty years of age.2 A migraine attack is considered to be one of the most disabling experiences that a human being can have.3
It is believed that only a small percentage of individuals living with headache disorders ever come forward to receive care, making it largely a silent and invisible illness. Patients who live with headache disorders are recognised as being a heavily stigmatised and misunderstood group, perhaps the most stigmatised patient group of all (Shapiro et at 2024,4 Migraine has historically been chronically under researched, underfunded, misunderstood, minimised and dismissed across broader society, within healthcare and within patients themselves through internalised stigma. Stigmatisation itself is recognised as a driver in the chronic underfunding and under researching of headache care. The experience of stigma has been shown to play a significant role in the exacerbation of chronic pain.5
Thankfully, there is something of a culture shift in migraine care. More research into and awareness of the condition and its manifestations alongside newly developed treatments are hopefully improving the quality of life of the many who live with the daily, often unnoticed challenges of the condition. This article hopes to explore how impactful changes can be made within the healthcare setting.
What is Migraine?
Migraine is understood now to be a disorder of nerve activity in the brain. When an attack is triggered, it causes a wide range of different symptoms and disabling experiences to the individual. Migraine
is classified into episodic and chronic migraine, depending on the number of days per month a person experiences migraine symptoms. Typically, a migraine attack lasts 4-72 hrs untreated and manifests with symptoms such as a one-sided pulsating headache of moderate to severe intensity, aggravated or causing avoidance of physical activity, nausea, vomiting, photophobia and phonophobia. (ICHD3, 6). It is a highly individualised condition however with an extremely broad range of other symptoms and manifestations, however. There are many subtypes with individual features. Some subtypes include migraine with aura, vestibular migraine, hemiplegic migraine, retinal migraine, menstrual migraine. It is helpful to be aware of other types of primary headache conditions, including New Daily Persistent Headache, Cluster Headache and TensionType Headache. These are conditions experienced by individuals with whom we regularly interact at Migraine Ireland. People who live with a headache disorder are at risk of developing complex complications such as secondary headache condition known as Medication Overuse Headache.
Correct, informed management of headache conditions is essential to protect patients.
Migraine Burden
The burden of disability that comes with living with migraine is often not fully understood by society. Individuals can live with highly debilitating, pain, focal disturbances, nausea and vomiting, aphasia, dizziness, mobility issues and much more, depending on their diagnosis. Hemiplegic migraine for example can cause temporary paralysis of the face and limbs on one side of the body. In some cases, more commonly in the older populations, migraine symptoms can present without headache at all. Symptoms that are often overlooked yet carry significant quality of life issues include the pre and postdrome stages, where following an attack patients can be left for days with lingering symptoms such as exhaustion and brain fog. There is also what is known as inter-ictal burden of headache. This is the burden of living with the fear of the next attack. This burden can significantly impact a person’s quality of life, decision making and ability to live independently and interact with society.
Migraine is often described as an invisible or hidden disability. Many living with this condition live lives punctuated by stigma, misunderstanding and silent suffering. Much of this stems from societal legacy issues, for example, migraine has had an historic association as disease of women. This association has had a heavy hand in the chronic stigmatisation of the condition, and all that stems from this stigma. It is well documented that societal pressures on men have obstructed men from coming forward for help early in relation to their health concerns overall. This can put men at risk of developing more complex and severe manifestations of headache conditions before they come forward for help, which often require more complicated treatment and management.
Individuals living with migraine are at increased risk of social isolation and misunderstanding and discrimination in the workplace or at school or college. The largely invisible nature of the condition and its symptoms, coupled with fact that the term “migraine” is generally synonymous in daily society, with a bad headache attack, has caused many to manage the condition silently, alone and misunderstood, managing a silent burden that is even at times, unbeknownst to themselves. Individuals living with migraine are at risk of the socioeconomic dangers that come with disability. Building the awareness needed through education at all levels, healthcare practitioner – patient interactions, within healthcare itself and across broader public, societal and cultural spheres is paramount.
Migraine Care In Ireland
The patient who is concerned about headache symptoms, usually starts their journey by visiting their GP Practice or Emergency Department. Migraine can, and is often, managed at Primary Care level, often a specialist referral is needed too. Community pharmacists are crucial resources for migraine management in the community.
In recent years, migraine and headache care in Ireland has significantly improved. There are now several specialist headache clinics in the Dublin area, clinics in Cork and Galway, Limerick and more. There are a growing number of Consultant Neurologist Headache Specialists, Clinical Nurse Specialists and Psychologists providing specialist headache care within the hospital settings. Sometimes these clinics aren’t well known. Contacting your neurology department a finding out what resources are available within your clinical setting could prove a valuable resource to patients and to staff members.
Diagnosis can be lengthy, and usually involves a detailed history and patient diary keeping. Treatment depends on the history, diagnosis and circumstances of the patient, there are a range of acute and preventative treatments, including advanced treatments. Patient support with lifestyle management, understanding of their condition and how it manifests, and getting to understand “triggers” are all part of the process. Specialist physiotherapy, cognitive behavioural therapy, acupuncture are also recognised as supportive options for migraine care.
When Migraine Is Diagnosed
Often times a patient receives their diagnosis of migraine in hospital. Patients may have presented with what can be frightening symptoms. A series of investigations is carried to determine the cause and rule out life threatening conditions before the diagnoses is given. Understandably, there can be some initial relief experienced by both the patient themselves and their healthcare team, once more sinister or acutely threatening causes of their symptoms have been ruled out.
At Migraine Ireland, we frequently receive calls from patients who have been newly diagnosed with migraine after being hospitalised with their symptoms. Patients are often left reeling from a rollercoaster journey from hospital. Having for perhaps the first time experienced the scary and debilitating symptoms of migraine, the fear and trauma of having gone through the process of ruling out life threatening conditions, followed then perhaps by initial feelings of surprise and relief from receiving a diagnosis of migraine, only to be then faced with the gravity of being diagnosed with a complex, debilitating neurological condition, can be extremely confusing and hard to process the meaning of the experience and new diagnosis for many reasons.
Healthcare professionals are in an optimum position to significantly impact patient’s quality of life and outcome, and ability to cope. Providing education at this crucial stage can have a long-lasting positive effect. Resourcing patients in understanding, and preparing to manage their condition once discharged, empowers patients and makes a meaningful impact on a person’s ability to cope and quality of life, both of which have been shown to improve patient outcomes, and reduce the impact of symptoms.
Some examples of patient education could include, but are not limited to
– building an understanding of migraine as a condition within the patient
– explaining terms and developing understanding of terms such as episodic and chronic migraine
– the patient’s particular migraine condition and what this may mean for them, for example migraine without/with aura, hemiplegic migraine, vestibular migraine.
– Skill building, such as informed diary keeping, lifestyle and trigger knowledge in a sense that empowers the patient.
– Navigation and signposting for multidisciplinary follow up care
– Establishing the importance of GP and community pharmacy relationships
– Awareness of risks that the migraine community may face on their journey such as stigmatisation, social isolation, workplace challenges and supports that are available, such as Migraine Ireland, Disability Federation of Ireland, HSE Living Well Course, Social Prescribing.
Hopes For the Future
With greater awareness, understanding and knowledge, there is hope that the quality of life and disease burden of individuals living with migraine can be improved. Thankfully, in many cases, the condition is treatable when managed effectively. Healthcare professionals, both in the hospital setting and elsewhere are placed within a unique opportunity to make long lasting meaningful impacts into the lives of many who are often overlooked. We at Migraine Ireland wish to thank you profoundly for your interest in this patient cohort and remain at your disposal for any support whatsoever that we can provide.
References
1. Global Burden of Disease Study 2016 (GBD 2016) Data Resources | GHDx (healthdata. org)
2. Vos T, Allen C, Arora M. Global regional and national incidence prevalence and years lived with disability for 310 diseases and injuries, 1990–2015: a systematic analysis for the Global Burden of Disease Study 2015. Lancet. 2016;388(10053):1545–602.
3. Silver, Nick (2018) Migraine – a comprehensive guide (thewaltoncentre.nhs. uk)
4. Shapiro et al 2024 Migraine-Related Stigma and Its Relationship to Disability, Interictal Burden, and Quality of Life | Neurology
5. Parikh et al Stigma and Migraine: Developing Effective Interventions | Current Pain and Headache Reports (springer.com)
6. 1. Migraine – ICHD-3
7. Hämel et al How do nurses support chronically ill clients’ participation and self-management in primary care? A crosscountry qualitative study | BMC Primary Care | Full Text (biomedcentral.com)
8. Benkel et al Living with a chronic disease: A quantitative study of the views of patients with a chronic disease on the change in their life situation – Inger Benkel, Maria Arnby, Ulla Molander, 2020 (sagepub.com)
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