Community Insights Report

Patient Experience and Psychological Comorbidities of Cluster Headache

Identifying gaps in care through patient voices

Authors

Arzu Burak, Parmin Zolfaghiri, Walaa Al Haj Ali, Azra Ozsert, Anouk van der Vliet, Fleur van Loon, Darshan Ramanagoudra, Lea Jabbarian

MyClusters · Erasmus MC

Erasmus MC Collaboration18 Patient InterviewsNetherlands

Background

About Cluster Headache

Cluster headache (CH) is a rare and extremely painful form of primary headache, affecting an estimated 0.1% of the world population. It is characterised by unilateral, recurrent attacks of severe periorbital pain, often accompanied by autonomic symptoms.

Several studies suggest that CH is associated with substantial psychological comorbidity. This study explores the lived experience of patients with CH, its psychological impact, perceived shortcomings in the current healthcare trajectory, and the strategies patients use to improve their quality of life.

Semi-structured interviews were conducted with eighteen participants with a clinically confirmed diagnosis of cluster headache in the Netherlands.

Patients

Interviewed

Months

Avg. time to diagnosis

8/10

Pain Rating

Minimum reported

90 min

Avg. Duration

Per attack

Participants

Patient Demographics

Gender

Women (77.8%)

Men (22.2%)

Type of CH

Chronic (66.7%)

Episodic (33.3%)

Diagnosed By

Neurologist (77.8%)

General practitioner (33.3%)

Age Distribution

20–30

22.2%

31–40

38.9%

41–50

22.2%

51+

11.1%

Location of Pain

Right

66.7%

Left

33.3%

Both sides

11.1%

100% of participants rated pain intensity at 8/10 or higher

Physical Impact

Somatic Co-morbidity

All participants reported experiencing somatic co-morbidity alongside headache attacks. Attack frequency varied from 0 to 15 per day, with durations ranging from 10 to 660 minutes.

94.5%

Stuffy/runny nose

77.8%

Tiredness

72.2%

Cramps

66.7%

Teary eye

61.1%

Hanging eyelid

Before an Attack

Identified Triggers

88.9%

of participants identified specific triggers preceding their attacks

Environmental factors such as temperature changes and seasonal shifts were the most commonly reported triggers. Lifestyle factors such as sleep, alcohol consumption, and stress were also mentioned as triggers preceding an attack.

Patient Voices

Impact on Daily Functioning

All participants reported a significant impact of CH on their daily functioning, often demanding changes in living or working arrangements, continuous medication management, and limitations in social and future planning.

82%

Work difficulties

47% reported that they were incapacitated for work

29%

Academic impact

Ranging from impaired performance to termination of the academic program

95%

Outlook changed

Their view on the future changed due to the diagnosis

Work & Career

47% reported that they were incapacitated for work
22% felt forced to change professions
Only 12% maintained employment, with substantial difficulty
Increased absenteeism and reduced work productivity were frequently mentioned

Social Environment

83% felt supported by their social environment
However, a lack of full understanding was frequently reported
CH was often underestimated or equated with migraine
Common consequences: sleep deprivation, social isolation, and anxiety

Mental Health

Psychological Symptoms

94.5%

reported anxiety, often linked to fear of attacks

50%

reported suicidal ideation or thoughts of euthanasia

44.5%

reported depressive symptoms

Prevalence of Psychological Symptoms

56%

reported improvement over time, largely through more adaptive coping strategies or psychological support

33%

experienced worsening, often due to ineffective treatments or increasing social isolation

11%

reported a fluctuating course of psychological symptoms

Healthcare

Gaps in Care & Patient Voices

Participants reported various shortcomings in the current treatment approach and healthcare communication. A clear need was expressed for better coordination among healthcare professionals and the development of integrated, multidisciplinary care pathways.

Many participants felt that their pain is underestimated by healthcare professionals and often equated with "regular headaches". This lack of validation contributes to frustration, panic, and despair.

78%

expressed a desire for more empathy and understanding from healthcare providers

Key Findings

1Need for better coordination among healthcare professionals

2Development of integrated, multidisciplinary care pathways

3Follow-up consultations should address daily functioning and mental well-being

4Insufficient information about medication mechanisms, administration, and side effects

5Patients want active involvement in treatment decision-making

6Pain often underestimated or equated with 'regular headaches'

7Psychological support and self-management tools are lacking

Outlook

Conclusions & Recommendations

Recognise the psychological impact

Participants highlighted the need for recognising the psychological impact of cluster headaches. Their pain is often underestimated by healthcare professionals, contributing to frustration, panic, and despair.

Integrated care pathways

Develop integrated, multidisciplinary care pathways with better coordination among healthcare professionals. Follow-up consultations should address daily functioning and mental well-being, not just attack frequency.

Empathy and understanding

Participants expressed a desire for more empathy and understanding from healthcare providers. Greater recognition of the severity and psychological burden of this condition is urgently needed.

Patient involvement

Advocate for a more transparent approach to treatment options with active patient involvement in decision-making. Participants want more information about medication mechanisms, administration, and side effects.

Psychological support

A need for psychological support, including learning about self-management tools, was expressed. More than half of participants saw improvement through more adaptive coping strategies or professional psychological support.