Cluster headache: patients face ‘unacceptable’ barriers to treatment

Posted 21 March 2024

New survey to mark Cluster Headache Awareness Day (Thursday 21 March) highlights the obstacles faced by patients seeking effective care

A new survey by leading headache organisations has highlighted the obstacles many patients affected by cluster headache must overcome to access effective treatment options.

Cluster headache is considered to be one of the most excruciatingly painful conditions known.

Cluster headache, which affects around one person in a thousand, is considered to be one of the most excruciatingly painful conditions known and is often referred to as the ‘suicide headache’. Yet despite its devastating impact, the new survey shows many patients remain unable to access the care they need, with around a quarter not receiving access to recommended oxygen treatment.

Cluster headache is characterised by pain on one side of the head and is rapid in onset, reaching a peak in several minutes. Sufferers often become very agitated and pace around or writhe in pain, hitting or banging their heads on the wall to try to distract from the horrific pain. This sign of agitation helps to distinguish the condition from migraine attacks which are often worsened by movement. A cluster headache attack may also be accompanied by a red, watering eye, drooping eyelid or stuffy nose.

The relative rarity of the condition and a lack of awareness may lead to long delays in accessing effective treatment, since many people with cluster headache may be misdiagnosed with migraine.

The goal of the survey was to understand the challenges patients with cluster headache face when seeking treatment with oxygen and sumatriptan injections – the gold standard treatments for cluster headache. Feedback from patients highlighted the variability of care across the UK, the battles many people with cluster headache face and the continuing need for education and awareness among the medical professional and the wider public.

Oxygen cylinders, when prescribed, can resolve the pain in under 30 minutes – and sometimes as few as five minutes. Yet the survey found that in many areas of the UK nearly 25 per cent of people with a diagnosis of cluster headache have not been prescribed oxygen at all, despite it being one of the first line acute treatments recommended by the National Institute for Health and Clinical Excellence (NICE).

Dr Katy Munro, senior headache specialist at the National Migraine Centre said, “Cluster headache is one of the most agonising conditions we know of and all those affected must have easy access to effective, proven treatments. It is simply unacceptable that patients still need to fight to overcome barriers to care. We need a step-change in awareness and understanding and we hope that this year’s Cluster Headache Awareness Day will act as a springboard for change.”

The new survey was conducted by a coalition of leading UK headache organisations:

  • Organisation for the Understanding of Cluster Headache (OUCH UK),
  • the British Association for the Study of Headache (BASH), and
  • the National Migraine Centre

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