‘A cry in the dark’: a qualitative exploration of living with cluster headache

Abstract

Context:

Cluster headache is a rare primary headache disorder said to be one of the most painful conditions in existence. Limited evidence demonstrates cluster headache patients have difficulties securing a diagnosis and poor access to services. There is a gap in research around psychosocial needs, meaning there are no evidence-based guidelines to inform optimal management of this patient group in primary care.

Objectives:

The aim of this study is to explore the perspectives of cluster headache patients in the United Kingdom in order to suggest ways their care can be improved.

Methods:

It is an in-depth qualitative study involving telephone interviews with 15 participants with either chronic or episodic cluster headache. Semi-structured interviews (43–58 minutes) were conducted, recorded and transcribed verbatim. Two researchers conducted thematic analysis to identify themes.

Results:

Participants described the impact cluster headache has on their quality of life. They also felt the legitimacy of their disorder was questioned. This situation was often exacerbated by a reported lack of awareness among General Practitioners (GPs), which negatively impacted their care in terms of diagnosis and access to treatments and specialists. They attempted to control the pain through treatments and avoiding triggers, often with detrimental consequences for their social contact and mental health.

Conclusion:

Findings indicate the need to improve the lived experience of cluster headache patients in two key areas: (1) raising awareness of the disorder and its impact among GPs, and (2) extending care beyond clinical treatment provision, supporting patients in self-management and addressing its psychosocial impact, with implications for the management of this group in primary care.

Introduction

Cluster headache is a primary headache disorder that is said to be one of the most painful disorders known to mankind.^1,2 Despite this, awareness remains relatively low and little literature has been published on the topic.

Cluster headache has two forms: episodic and chronic. Its episodic form is more common, with attacks typically occurring in bouts lasting from 7 days to a year, followed by a period of remission for at least 3 months. ³ Around 10% to 15% of people have the chronic form, where attacks can occur for a year or more without remission, or with periods of remission lasting less than 3 months.^1,3

Epidemiological studies estimate that cluster headache has a lifetime prevalence of 0.12%.^4,5 It is more prevalent in men, with the male to female ratio estimated to vary between 2.5:1 and 3.5:1. ¹ Cluster headache leads to large healthcare costs caused by hospital admissions, pharmacy expenses, absenteeism and disability.^6,7 As with other chronic pain disorders, it can substantially decrease a patient’s quality of life, ⁸ while increasing their risk for anxiety, depression and suicidal tendencies.^9–11

In general, headache disorders are under-recognised, under-diagnosed and under-treated.^12,13 Despite being the third most common disease in the world, with a global prevalence of 14.7%, ¹⁴ migraines remain undiagnosed in at least 50% of patients. ¹⁵ Studies also demonstrate the majority of migraine patients are not receiving appropriate treatment, despite their availability. ¹³ This is mirrored in the cluster headache literature, which demonstrates that, although improving over time, patients face lengthy delays in diagnosis, a general lack of awareness among healthcare professionals and ineffective treatments.^16–18 As a result, the European Headache Alliance criticised healthcare services and current management practices for cluster headache as being inadequate in key areas such as diagnosis, treatment and support. ¹⁹

A key element to improving cluster headache care is gaining a better understanding of the patient perspective. The Department of Health has placed emphasis on patient-centred care, by involving the ‘expert patient’ as a method for shared and supported chronic disease management. ²⁰ However, little is known about the patient perspective of the condition. Exploring the experiences and support requirements of cluster headache patients will improve understanding of the burden of the condition. It will help to develop patient-centred services to address identified needs.

This study therefore aims to explore the views and experiences of people living with chronic or episodic cluster headache in the United Kingdom, and to suggest ways their care and support might be improved.

Method

Study design and data collection

A qualitative study was undertaken, based on an interpretivist approach to understanding lived experience. ²¹ Reflexivity was practised throughout, ²² particularly during data collection and analysis through active listening during interviews, memoing to record preconceptions and keep track of themes, ²³ and both researchers discussing emerging analysis.

Semi-structured telephone interviews were conducted using a flexible topic guide, allowing in-depth and rich data to be collected on the views and experiences of these patients,^24,25 and to access a rare and geographically dispersed population.^26,27

OUCH UK, the cluster headache charity in the United Kingdom, assisted with recruitment. A recruitment email (including a participant information sheet and consent form) was sent by OUCH UK to all of its members. People interested in participating who were over 18 years old and living with either chronic or episodic cluster headache in the United Kingdom contacted the researcher (L.A.) and a suitable time for the interview was arranged. Cluster headache patients were purposively sampled to ensure diversity in terms of cluster headache type, gender and age.^24,25 Informed consent was obtained before interviews commenced.

Members of OUCH UK who were also cluster headache sufferers were engaged in the development and implementation of the study. They helped to develop the research question, provided input to the study design and recruitment plans, reviewed study documentation (consent form, flexible topic guide, patient information sheet and recruitment materials), and took part in a pilot interview. Patient and public involvement (PPI) helped to make the study more accessible, meaningful and relevant to people with cluster headache. ²⁸

Data analysis

Each transcribed interview was read more than once and checked back against the original recording. ²⁹ The data were analysed inductively using the thematic approach outlined by Braun and Clarke. ²⁹

Two researchers immersed themselves in the data, reading the transcripts to understand participants’ experiences. Open coding was conducted in an iterative manner, moving back and forth between the codes and the data set. Memoing was used to record preconceptions and keep track of themes emerging. ²³ A total of 254 open codes were developed, from which 19 more focused and conceptual codes and 3 overarching themes were drawn out. The researchers discussed all themes that arose, resolving differences by discussion. Anonymised transcripts were coded using NVivo 11 software.

The study adheres to the Standards for Reporting Qualitative Research guidelines. ³⁰ Ethical approval was obtained from the Usher Institute Research Ethics Committee.

Results

In total, 15 interviews (9 men and 6 women) were conducted with 11 patients with episodic cluster headache and 4 with chronic, reflecting that episodic is the more common form. ¹ Interviews ranged from 43 to 58 minutes long. To aid transferability of the results, ³¹ sociodemographic information is detailed in Table 1.

Table 1.

Participant characteristics.

Participant	Cluster headache form (chronic/episodic)	Age	Gender	Employment status	Geographical location
P1	Episodic	40–60	Male	Retired/part-time	North-West England
P2	Episodic	40–60	Female	Employed (part-time)	South-West England
P3	Episodic	60+	Male	Employed	Yorkshire and the Humber
P4	Episodic	40–60	Male	Employed	North-West England
P5	Episodic	40–60	Female	Employed	Yorkshire and the Humber
P6	Episodic	40–60	Male	Employed	East of England
P7	Chronic	40–60	Female	Employed (part-time)	North East England
P8	Chronic	40–60	Male	Employed	North-West England
P9	Episodic	25–39	Female	Employed	East of England
P10	Episodic	25–39	Male	Employed	West Midlands
P11	Chronic	25–39	Male	Self-employed	East of England
P12	Episodic	40–60	Male	Unemployed	South-East Scotland
P13	Chronic	40–60	Female	Employed	South-West Scotland
P14	Episodic	40–60	Female	Unemployed	North-West England
P15	Episodic	60+	Male	Unemployed	East of England

Three overarching themes were identified: (1) Living with a misunderstood condition, (2) Adapting to cluster headache and (3) Struggling for control. These themes were identified through active and generative immersion in the data.^29,32

Living with a misunderstood condition

A key theme that featured across all interviews was of participants feeling misunderstood due to a lack of awareness of their disorder. All participants described an experience of extreme and aggressive pain:

It just feels like someone’s got a red-hot poker and is trying to push it through your eyeball. [. . .] It’s just, you know, the pain is so intense. (P8, M, 40–60, Chronic)

They call it things like ‘suicide headache’ and I can understand it because literally to stop the pain in your head, you would do anything to your head – stick it in a vice – anything, to try to relieve it. (P12, M, 40–60, Episodic)

Despite this, participants described feeling they are viewed sceptically when explaining the intensity of the pain they experience. As a result, many felt the validity of their disorder and their personal credibility were being questioned. In particular, eight participants voiced a frustration with the way cluster headaches are constantly compared with migraine. They reportedly considered migraine to be far less painful and that such comparisons belittled their experience, adding to its perceived illegitimacy in a social context:

It’s also really hard because of perception, because if you go ‘oh, I get cluster headaches’, people go ‘oh yeah, I get migraines too’ and you go yeah, I’ve had migraines as well but it’s not really a migraine. And then you have to explain that it’s a brain disease, and that it’s a stabbing pain in your eye and like someone’s driven a hot poker through your face. (P2, F, 40–60, Episodic)

It would just be nice if there was more awareness of it in general, rather than people going ‘oh yeah, I know what you mean, I’ve had migraine’. (P13, F, 40–60, Chronic)

Participants described the lack of awareness and understanding of cluster headache as being particularly problematic among General Practitioners (GPs). Interactions with GPs were described as ‘battles’ (P7, F, 40–60, Chronic), with participants having to advocate for their own care. This resulted in 10 participants facing lengthy delays in diagnosis and referrals to specialists. Their descriptions of the process suggest a sense of disbelief among professionals, typically resulting in them being misdiagnosed, and left without access to treatments:

I first started having attacks when I was sixteen but I wasn’t diagnosed with cluster headache until I was thirty-one. So, I went through a period of fifteen years, in my teens they basically misdiagnosed me with a whole load of stuff. They put me on beta blockers, Warfarin, Prozac, loads of stuff that didn’t work and I became quite depressed and disillusioned with the medical establishment and didn’t go back to a doctor about it for a long time. (P10, M, 25–39, Episodic)

In contrast to the other participants, two people described themselves as fortunate due to the fact they felt understood and supported by their respective GPs, resulting in a fast diagnosis and quick referrals to specialists:

I’ve been fortunate in that GPs have understood, they’ve been sympathetic and understood and I have had two separate referrals to two different neurologists and they have also understood. [. . .] It’s nice to know that people are there and understand. (P6, M, 40–60, Episodic)

Adapting to cluster headache

Another key theme relates to the adaptation process as participants attempted to make sense of their lives following cluster headache onset. For 11 participants, cluster headache led to a sense of social isolation, loss and change in their former selves. For those with chronic cluster headache, or those with the episodic form who described experiencing long bouts and frequent attacks, the impact was all encompassing:

You end up more and more isolated, losing family and friends and social circles . . . I was a really active, fun guy but even over the past five plus years, it’s ground me down to the point where I don’t recognise myself. (P11, M, 25–39, Chronic)

I couldn’t do a thing. I wasn’t able to drive because I felt so awful, wasn’t able to do anything. [. . .] And I remember thinking I was going to write letters to the kids [starts crying] because I thought I probably wouldn’t make another birthday I felt so awful. (P7, F, 40–60, Chronic)

Several participants, particularly episodic sufferers, described the ability to make changes in an attempt to adjust to a life with cluster headache. They described how through these changes and avoiding triggers they minimised its impact, giving them a greater sense of control. For example, a few participants described having supportive employers, enabling them to avoid their triggers and pace themselves:

I had a really slow phased return to work and I’m really fortunate in that with my job in that I can work from home so now I work from home so I can not have any smells, I can work in the dark [. . .] I’m really aware of feeling or sort of the feelings before you’re going to start getting bad, so I tend to just sort of minimise the things I’m doing. (P2, F, 40–60, Episodic)

In contrast to the 11 participants who described the significant impact that cluster headache had on their social and family life, the remaining participants, particularly episodic sufferers who described experiencing fewer attacks, spoke of incorporating it into their life. They primarily discussed the fact that instead of avoiding social events, they managed it by taking their treatment with them or avoiding triggers:

It doesn’t affect my social life at all, really. I’m not someone who goes out boozing and that sort of thing. I play in a band, I play bass in a band and you know, if I have to, if I have to cancel gigs because of my headaches, I do. But to be quite honest, [. . .] I didn’t get many during the day – they were bad at night, so if I had any gigs or rehearsals to do I still went to the gigs and the rehearsals and that didn’t affect my headaches, I just didn’t have any beer, you know, or anything like that. (P3, M, 60+, Episodic)

We were going out at a dinner and I knew I’d get an attack, so I took an injection with me and we were just sitting at the table and all that and I just thought ‘oh, here it comes’, so I just excused myself, went to the toilet, injected myself, came back, was quiet for about ten minutes and then I carried on again. (P6, M, 40–60, Episodic)

For the majority of participants, however, accepting the situation was often far from their minds. Instead, the hopelessness and pain were described as negatively impacting their mental health:

I do go through real serious depression. [. . .] Uh, and there have been times where I’ve been really suffering and none of the treatments are working, you know, that you do get suicidal thoughts, you know, it’s, it’s that bad. (P1, M, 40–60, Episodic)

[I feel] very low, very traumatised, very have I really just been through that? Is that really happening to me, am I going to keep experiencing this? [. . .] Psychologically it affects me so badly. (P14, F, 40–60, Episodic)

Several episodic sufferers also described the psychological impact between bouts, where they feared another attack. They also voiced how they felt that their mental health concerns were not addressed during consultations:

It’s always there in the background. [. . .] It’s not just when it’s happening, it’s the rest of the time as well. (P3, M, 60+, Episodic)

But I just feel mentally it’s overlooked. [. . .] It’s not really talked about that much, especially when you go to the neurologist, it’s kind of skated over. It’s ‘oh I’m a neurologist, I don’t deal with that’. (P14, F, 40–60, Episodic)

Struggling for control

A common trend across interviews was of participants learning about cluster headache and identifying strategies to control its impact. Most participants described being able to predict when their bouts would start. Participant 2, for example, described how her bouts typically happen ‘between the times of February and August’. Paradoxically, however, many participants also voiced that their attacks changed over time, requiring ongoing monitoring and adaptation of management techniques:

When I was younger, maybe in my thirties, I had shorter bouts and shorter remission times, but ever since I’ve been about 50, the remission times are longer in between, but the cluster headache bouts last about nine to ten months now. (P1, M, 40–60, Episodic)

Most participants voiced the fact that, with the exception of OUCH UK, support for sufferers beyond treatment provision is lacking. Instead, attempts to control the impact of cluster headaches were dominated by an ongoing process of participants weighing the benefits and risks of their actions. Being disciplined in avoiding triggers was one means of asserting control. When participants pursued a high level of trigger avoidance, however, they described how it could have a negative impact on their lives. Many described avoiding social situations for fear of triggering an attack, which exacerbated feelings of loneliness:

I do definitely live in fear. [. . .] I’ve basically stopped drinking because of it and you know, just anything that I can do to just stop. Because they also said that maybe strong smells can do it as well, so I now don’t have any strong smells in the house. No candles, no bleach, no anything cleaning related. [. . .] Yeah, I literally changed my whole life just to try and not to have them. (P9, F, 25–39, Episodic)

Being prepared with medication emerged as a way of trying to control the pain. Several participants described their dependency upon their medication, wanting to have access to it at all times in case of an attack. As part of this, they discussed the trade-off that they had to make in terms of the pain relief they get from taking various treatments, and the side effects they have to face as a result. They also described having to limit how many injections they take a day despite being in extreme pain. Many described rationing their medications to save them for the most extreme attacks:

I won’t feel very well because of the Verapamil because that makes my heart basically it just makes me quite faint because obviously it lowers my blood pressure too much basically. [. . .] Um, I do worry that obviously the amount of Verapamil that I take when I’m really suffering might negatively, you know, impact my actual health in a different way. (P9, F, 25–39, Episodic)

The Sumatriptan shots do work but because you can only take a maximum of two a day, you have to be very selective about when you use them because if you’re getting four to six attacks a day and you can only beat two of them with shots, that still leaves a few that you’ve got to try and manage. [. . .] So usually what happens is I try and save the shots for when I wake up and one is full blown. (P10, M, 25–39, Episodic)

Participants also described difficulties accessing repeat prescriptions from GPs, feeling that they needed to be proactive in their own care. They indicated this was an area where their care could be improved, with the majority attributing it to GPs being wary of over-prescribing due to the cost it would incur. This added to participants feeling that they needed to ‘save’ their treatments, and suffer without being able to take anything in the interim:

I have to request the injections and I’ll request fourteen so for a week’s supply. That has to then go past the receptionist, who will then only probably get the doctor to prescribe me eight. Then they have to be ordered in, so by the time I go and pick them up I have to give them another prescription while I’m picking the other ones up, it’s just silly. So, that’s frustrating. [. . .] I know my own body and I know if I’m going to need fourteen injections a week, I should be given fourteen injections. (P5, F, 40–60, Episodic)

Discussion

Summary

This study found that participants felt they were living with a misunderstood condition. They described a gap between the high levels of pain they experience and the public perception of cluster headache as a trivial condition. For many, this issue was exacerbated by a reported lack of acknowledgement and awareness among the medical profession, resulting in delays in diagnosis and issues for their care. Many attempted to manage the pain with a controlled treatment regime and avoiding triggers, which added to their sense of social isolation. Relatedly, the pain of cluster headache and fear of triggering attacks had a detrimental impact on participants’ sense of self. As a result, participants made adjustments to assimilate to their new life following cluster headache onset, with varying degrees of success. For most, cluster headache had a highly negative impact on their mental health and well-being.

Strengths and limitations

The majority of participants fall into the age bracket 40 to 60 years old and are from the Northern region of England, potentially limiting the transferability of the findings. All participants were also members of OUCH UK and it is reasonable to assume that the experiences of non-members could be different, which could limit the transferability of the findings. However, drawing parallels with similar themes evident in the existing literature on experiences of chronic disease (below) adds to a conceptual evidence base that may be applicable in other settings. Moreover, recruiting via OUCH UK did facilitate access to an otherwise hard-to-reach group that is geographically dispersed. The number of participants (n = 15) is adequate for this type of exploratory study with a rare patient group, particularly in that the themes were clearly evident across the data, suggesting a level of data saturation. ³³

Despite concerns in the literature around the use of telephone interviews,^34,35 this method did not impact the ability of the interviewer to create rapport with participants, as others who used the method have found.^35–37 This is reflected in the fact that the average length of time of the interviews was 50 minutes. Using telephones also facilitated interviews for those experiencing an episode of cluster headache as they could cancel or reschedule if they had an attack without too much inconvenience or embarrassment. ³⁸

Comparisons with existing literature

Challenges to the legitimacy of cluster headache as a painful condition seen in this study are mirrored in Palacois-Ceña’s Spanish study, the first qualitative study with cluster headache participants. ³⁹ This is a common thread in many studies of chronic pain, where pain levels were questioned, resulting in both ‘felt’ and ‘enacted’ stigma being reported.^40–43 The chronic pain literature also indicates that such disbelief leads to feelings of isolation, disempowerment and emotional distress, feelings that are prevalent throughout this study. ⁴²

Participants described seeking medical validation for their pain, with securing a diagnosis emerging as a dominant issue for many. The doctor–patient relationship was often described as one in which the patient has to struggle to gain access to viable medical management options. This experience is comparable to studies focused on contested illnesses, such as fibromyalgia, which also report the breakdown of the doctor–patient relationship. ⁴⁴ This was particularly an issue for participants in the present study given their perceptions of a poor understanding of the disorder among GPs and delays in referrals to specialists, alongside issues accessing treatments.

Participants described struggling to achieve a balance between abiding by their management regimen and not wanting to let it take over their lives. Radley has described how chronic patients become a ‘divided figure’. ⁴⁵ On one hand, they are required to routinely abide by the ‘sick role’ in terms of a regimen of self-monitoring and compliance to medicines, while also having to abide by the expectation to perform their ‘normal’ functioning roles. ⁴⁵ This conflict is also present in much literature around migraine management, where migraine sufferers do everything they can to manage their disorder, often resulting in condition management dominating their lives.^46,47 Although the issues for cluster headache sufferers are different, this experience resonates with that of participants in this study.

The majority of participants in the present study stated that beyond support from OUCH UK, their care was solely focused on treatments. Relatedly, current guidelines for the management of cluster headache are almost wholly focused on treatment options. There is very little mention of providing patients with psychological support or patient education.^48,49 The British Association for the Study of Headache guidelines state that cluster headache management is primarily pharmacologic, a sentiment echoed across the literature.^48–52 Exploring the experiences of those not accessing support through OUCH UK to look at their psychological needs and the extent to which they are being met by current care is therefore an area of interest for future research.

Throughout the interviews, participants described the conflict between their strict control regimens and their attempts to maintain a sense of self, which often resulted in a sense of transition and loss. Participants described withdrawal from their social lives, with cluster headaches permeating a large portion of their lives and negatively impacting their mental health. Participants’ accounts therefore reflect much of the sociological literature around chronic illness as a ‘biographical disruption’ or as a ‘loss of self’, undermining the unity between the body and self and thus forcing identity change.^53,54 Further mixed-methods research is warranted to explore those who adjust more successfully, to identify and promote protective factors that can aid management of the disorder.

Implications for research and/or practice

The study’s rich and in-depth interviews have contributed novel insights to a previously limited evidence base on the experiences of those living with cluster headache in the United Kingdom. It offers direction in terms of the interventions and support required, which can be explored further by future research. As such, it should be seen as an important and initial step in the process of developing targeted interventions to improve the quality of life among this population.

One enduring theme was that of participants feeling like they are living with a misunderstood and contested condition, exacerbated by a perceived lack of awareness among the medical profession. The findings suggest that patients would benefit from clear acknowledgement of the pain they are experiencing. This study, coupled with further work to understand health professional views on and understanding of cluster headache, could feed into professional training to improve awareness and promote more sensitive management of the condition. More proactive care in terms of sufficient treatment provision and access to specialists would also lead to immediate improvements in the management of the disorder.

The study findings also suggest that at present, the care for cluster headache patients in the United Kingdom is limited to pharmacologic management. The data indicate that cluster headaches can have real implications for participant’s mental health and psychological support is also required. Professionals could therefore adopt an integrated, whole-person approach to care provision, looking at both physical and mental health during consultations. Psychological education and support could also be provided as part of a cluster headache self-management programme to empower patients to look after their mental and physical health. Available peer support groups (local/online), such as those offered through OUCH UK, and signposting to relevant services such as counselling, should also be included as part of this. Further research will also be of benefit here in terms of identifying protective factors that will help patients manage the impact it can have and adjust to a life with cluster headache.

Finally, the findings suggest that the day-to-day decisions that cluster headache patients make have a large impact on their headache management and overall health. Tailored support and signposting for self-management, including behavioural management techniques, could therefore be of benefit. The information from this study could also inform educational programmes and resources for cluster headache patients, which can be used to empower patients to look after their care.

In conclusion, the majority of participants in this study spoke of sub-optimal management and of current service provision not meeting the total burden of their condition. Further research is required to inform and develop evidence-based interventions and models of care. Only then can cluster headache patients be given access to more holistic and patient-centred care, filling the current gap in unmet need.