"It sounds like a bad migraine, try over-the-counter painkillers.", what you've probably been told
Cluster headache
NHS guideline CG150 explicitly covers cluster headache. Acute attacks should be treated with 100% high-flow oxygen and subcutaneous or nasal sumatriptan. In practice home oxygen for cluster headache is specialist-initiated (typically by neurology) rather than prescribed directly by GPs, and the Home Oxygen Order Form (HOOF) is completed by the specialist service. Prevention is usually verapamil with ECG monitoring, with a short corticosteroid course as a bridge. Urgent neurology referral is recommended on first suspicion.
The wait: Average time to correct diagnosis is around 5 years.
What GPs miss
Cluster headache is routinely misdiagnosed as migraine or sinusitis. Many GPs do not realise high-flow oxygen and the sumatriptan auto-injector are NHS-funded under CG150, and verapamil prevention is sometimes started without the baseline and follow-up ECGs the guideline requires.
The letter asks for
- A CG150-aligned diagnosis of cluster headache
- Acute treatment: subcutaneous or nasal sumatriptan, and an urgent neurology referral to initiate home oxygen (HOOF is completed by the specialist service)
- Preventive treatment: verapamil with baseline and follow-up ECG monitoring as set out in CG150
- Urgent neurology referral for confirmation and ongoing management
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Frequently asked questions
My GP says oxygen isn't available on the NHS for headaches, is that right?
No. CG150 recommends 100% oxygen for acute cluster attacks. In practice it's the neurology team, not the GP, who completes the Home Oxygen Order Form (HOOF), so the letter asks for an urgent neurology referral to get oxygen initiated.
What you hear vs. what CG150 says
What's usually said in the room
"It sounds like a bad migraine, try over-the-counter painkillers."
What the guideline actually says
Cluster headache is routinely misdiagnosed as migraine or sinusitis. Many GPs do not realise high-flow oxygen and the sumatriptan auto-injector are NHS-funded under CG150, and verapamil prevention is sometimes started without the baseline and follow-up ECGs the guideline requires.
Source: Headaches in over 12s: diagnosis and management (CG150)
Benefits and rights for Cluster headache
Outcomes from people with Cluster headache
One short email each Sunday, anonymised stories from people who got their GP to take them seriously.