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It was a gloomy weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden pain bloomed behind my right eye. This was followed by quick jolts, similar to electric shocks. As each class came and went, the discomfort eased and then came back with increased intensity. Four times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The attacks returned frequently that autumn, and once more in the spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-on pain in the classroom by 9.30am. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often start with severe pain around one eye that persists up to several hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more often diagnosed. Attacks typically begin with abrupt, excruciating pain focused on a single eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in periodic bouts; some patients have chronic attacks, characterized by the absence of long symptom-free periods.

What connects sufferers is the severity. One research paper rated the pain at 9.7 10, more severe than broken bones or other conditions. Another discovered 64% of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to many triggers, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize life around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the disease to an evil spirit who afflicted his victims' heads.

Historical medical records suggest bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, migraine was identified as a separate condition, with therapies ranging from bloodletting to other, more folk cures.

It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by global 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 artery that supplies blood to the head. Leading experts in treating the disorder explain this.

In 1998, researchers released the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had multiple operations before eventually being correctly identified in 2014, after a doctor looked up his symptoms.

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other common head pain conditions, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer guided me through oxygen treatment and medication until the episode passed.

Official guidance on management recommend that patients are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But consultant specialists believe the guidance need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout determines the approach.” Brief bouts with infrequent episodes are handled with acute treatment alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a