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It began on a overcast Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sharp sensation erupted behind my one eye. It was followed by quick stabs, reminiscent of lightning bolts. As each class came and went, the pain eased and then returned with increased force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I took paracetamol, but the agony remained unbearable.

The attacks returned frequently that fall, and again in the spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could predict the routine: aura in the shower, early twinges on the train, full-blown pain in class by mid-morning. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with severe pain behind a single eye that persists for three hours.

Approximately one in 1,000 people are affected by the condition, and males are more frequently affected. Attacks usually begin with sudden, severe agony focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in periodic cycles; some patients have chronic attacks, defined by the lack of extended symptom-free periods.

What unites patients is the severity. One study scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster patients reported thoughts of self-harm during bouts; the number fell to 4% when they were not in pain.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, like many causes, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the failure to organize daily activities around unpredictable attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described across history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Historical healing records propose unusual remedies for what some experts would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies including bloodletting to other, more superstitious remedies.

It was a European physician who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the brain. Prominent specialists in treating the disorder note this.

In 1998, researchers released the findings of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, featured in a major medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common headache disorders, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a calm advisor guided me through oxygen treatment and medication until the episode eased.

Official guidelines on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of well-known individuals.

But leading neurologists argue the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Short cycles with occasional attacks are managed with acute therapy alone. Longer or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a