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It was a gloomy Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sudden sensation bloomed behind my right eye. It was followed by quick jolts, like lightning bolts. As the school day came and went, the discomfort eased and then returned with greater force. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and again in the spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-blown pain in class by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

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

About 1 in 1000 people are affected by the disorder, and males are more often diagnosed. Cluster headaches typically begin with abrupt, excruciating agony focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in periodic bouts; some patients have chronic cluster headaches, defined by the lack of extended pain-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster patients reported thoughts of self-harm amid bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was a toddler. “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. Alcohol in her adolescence, like many causes, 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 drunken behavior. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to plan daily activities around erratic pain took its toll. She especially 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 worst episodes. “It robs you of the small liberties we don't appreciate 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 documented throughout the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the disease to an evil entity who afflicted his victims' heads.

Ancient healing records propose bizarre treatments for what some observers would classify as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with treatments ranging from herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache happening and vanishing each day at fixed hours”.

Cluster headaches were only officially classified by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the head. Leading specialists in treating the condition explain this.

In the late 1990s, scientists released the findings of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, featured in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such advances, diagnosis remains slow. One man's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being correctly identified in 2014, after a physician researched his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a calm volunteer guided me through oxygen treatment and medication until the episode eased.

Official guidance on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of well-known individuals.

But leading specialists argue the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Short cycles with infrequent episodes are managed with abortive therapy only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a