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It was a gloomy Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation sprang behind my right eye. Then came rapid stabs, reminiscent of electric shocks. As the school day progressed, the pain eased and then came back with increased intensity. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches appeared frequently that autumn, and once more in the spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with severe discomfort behind a single eye that lasts up to three hours.

About 1 in 1000 individuals are affected by the disorder, and men are more often affected. Attacks usually begin with sudden, excruciating agony focused on one eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in periodic cycles; others have continuous cluster headaches, characterized by the lack of long pain-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the number dropped to 4% when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, like several causes, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her family often interpreted her episodes as intoxicated behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the failure to organize daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls winning 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 ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient medical records suggest bizarre remedies for what modern experts would classify as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with treatments including bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.

The disorder were only officially recognised by global headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the head. Leading experts in treating the condition explain this.

In 1998, scientists released the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache disorders, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which side do signs occur? For how long? What season? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a calm advisor guided them through oxygen treatment and medication until the attack eased.

National guidelines on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But consultant specialists argue the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout dictates the approach.” Short bouts with infrequent attacks are handled with acute treatment only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a