Cluster headache is more than ‘just a headache’ – but this excruciating condition is often misdiagnosed

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Lisa Dikomitis, Professor in Anthropology and Sociology of Health, Keele University, Fayyaz Ahmed, Professor of Clinical Neurology, Hull York Medical School, and Alina Buture, PhD researcher, Hull York Medical School
The Conversation

Cluster headache is more than just a headache. It is a severe neurological condition, sometimes known as a “suicide headache” because many patients have suicidal thoughts during attacks. The pain experienced during a cluster headache attack is excruciating and is said to be comparable to the pain of childbirth. Such attacks can last from 15 minutes to three hours and can occur several times per day. The pain is almost always on one side and typical features of an attack may include bloodshot or teary eyes, droopy eyes and a runny nose or blocked nostrils.

Around one in 1,000 people experience cluster headache. It’s perceived as a rare disease, but in fact is as common as well-known neurological conditions such as multiple sclerosis or Parkinson’s disease. Getting the right treatment for this condition is difficult, as our recent study showed.

We found that many healthcare professionals do not know cluster headache or how to diagnose the condition. This has serious consequences for those suffering. Our research also shows patients regularly face long delays and undergo unnecessary procedures and referrals to specialist care before receiving the correct diagnosis and treatment.

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