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It was a dreary Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain erupted behind my one eye. It was followed by rapid jolts, like lightning bolts. As each class came and went, the pain eased and then came back with increased force. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I took aspirin, but the agony remained unbearable.

The headaches appeared frequently that fall, and once more in the spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with severe discomfort around a single eye that lasts for several hours.

Approximately one in 1,000 people suffer by the disorder, and males are more frequently affected. Attacks usually start with sudden, severe pain around a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in seasonal bouts; some patients have continuous attacks, characterized by the absence of long symptom-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another found 64% of cluster headache patients reported suicidal thoughts during bouts; the number fell to four percent when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to many causes, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They attributed the disease to an malevolent entity who attacked his victims' heads.

Ancient medical records propose bizarre remedies for what modern observers would describe as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with treatments including bloodletting to other, more folk remedies.

It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing each day at specific hours”.

Cluster headaches were only formally recognised by global medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the brain. Prominent experts in treating the disorder explain this.

In 1998, researchers released the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains slow. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first arrive to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a reassuring advisor guided me through oxygen therapy and medication until the attack eased.

Official guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But leading specialists believe the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Short bouts with occasional episodes are handled with abortive treatment alone. Longer or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve signals.

The national guidelines need updating to reflect a