New research has found that people suffering from cluster headache often face a long delay in being diagnosed correctly.

The reasons for misdiagnosis and mismanagement have highlighted tensions between primary and secondary care around cost of medication, referral process and remit of prescribing treatment.

Cluster headache is a severe headache that begins quickly and without warning, and is commonly referred to as ‘suicide headache’ because 64% of patients have passive suicidal thoughts. The attacks can last between 15 minutes and three hours, and typically occur between one and eight times a day.

Patients with a headache represent 4% of doctor appointments in the UK and only 2–3% of them are referred to specialist neurology services. Cluster headache is often misdiagnosed as migraine and, as a consequence, is often mismanaged. Although it is often seen as a ‘rare’ condition, its prevalence is in fact similar to that of other well-known neurological conditions, such as multiple sclerosis and Parkinson’s disease.

The Cluster Headache: Impact and Perception Study (CHIPS) published today in the British Journal of General Practice, was led by Professor Lisa Dikomitis at Keele University with Dr Fayyaz Ahmed from the Hull York Medical School and neurologists at King’s College London and Ghent University, Belgium. The CHIPS study, funded by a grant from the Headache Research Trial Fund at the Hull University Teaching Hospital NHS Trust, explored the experiences, perceptions and understandings of GPs and neurologists.

Clinicians who participated in the CHIPS study acknowledged delays in diagnosis, misdiagnosis, and mismanagement of cluster headache, and were aware of the potential impact cluster headache can have on patients’ mental health and ability to remain in employment. According to clinicians most patients were likely to experience psychiatric conditions such as depression, self-harm, and suicide thoughts and attempts.

Most of the participating clinicians were also aware that many patients with cluster headache had unnecessary procedures performed, such as teeth extraction or sinus washouts, before a correct diagnosis was made.

The CHIPS research highlights tensions between primary and secondary care around referrals and the cost implications of prescribing treatment regimens. The clinicians claimed reasons for a patient referral was due to their anxiety over the condition, their need for reassurance that they do not suffer with a life-threatening illness and insistence about seeing a specialist.

Participating GPs mentioned that they rarely refer patients with headache to neurology departments in secondary care. Neurologists recognised that pressures in hospitals regarding prescribing treatment contributes to tensions between GPs referring patients to secondary care. The study also found that GPs occasionally override the specialist advice and prescribe cheaper drugs, such as oral triptans instead of injectable or nasal triptans.

Professor Lisa Dikomitis, Director of Research at Keele’s School of Medicine and Academic Lead of Keele’s Institute for Global Health, says it is important there is a clear referral and management pathway for cluster headache to improve patient outcomes and reduce healthcare costs.

Professor Dikomitis said: “Cluster headache is often poorly recognised in primary care. The CHIPS study shows that patients regularly face long delays before receiving a correct diagnosis. Misdiagnosis, and consequently mismanagement, is common. Awareness of the disease severity and associated comorbidities, such as depression and high risk of suicidality, should be raised among GPs and healthcare professionals working in primary care settings.”