"It sounds like a bad migraine — try over-the-counter painkillers."— what you've probably been told
Cluster headache
NICE CG150 explicitly covers cluster headache. Acute attacks should be treated with 100% high-flow oxygen (prescribed via the Home Oxygen Order Form / HOOF) and subcutaneous or nasal sumatriptan. 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.
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 started without the baseline and follow-up ECGs the guideline requires.
- A CG150-aligned diagnosis of cluster headache
- Acute treatment: 100% oxygen via HOOF and subcutaneous or nasal sumatriptan
- Preventive treatment: verapamil with baseline and follow-up ECG monitoring as set out in CG150
- Urgent neurology referral for confirmation and ongoing management
My GP says oxygen isn't available on the NHS for headaches — is that right?
No. CG150 recommends 100% oxygen for acute cluster attacks and the Home Oxygen Order Form (HOOF) is the standard NHS route. The letter cites this directly.
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 started without the baseline and follow-up ECGs the guideline requires.
Source: Headaches in over 12s: diagnosis and management (CG150)
Outcomes from people with Cluster headache
One short email each Sunday — anonymised stories from people who got their GP to take them seriously.