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It began on a dreary Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden sensation bloomed behind my one eye. Then came rapid shocks, like electric shocks. As each class came and went, the pain subsided and then came back with greater intensity. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and once more in spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the train, full-on agony 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 typically start with severe discomfort around a single eye that lasts for several hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more frequently diagnosed. Cluster headaches typically start with abrupt, excruciating pain focused on one eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in periodic cycles; others have continuous attacks, defined by the lack of long pain-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the figure dropped to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Wales, finds this understandable. 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 her youth. Drinking in her teens, similar to many causes, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Support eventually came from her father and then from her partner, Rod. “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, in part due to time off during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize life around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Ancient healing texts suggest unusual remedies for what some experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with therapies including bloodletting to other, more folk remedies.

It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially recognised by international medical societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the head. Leading experts in diagnosing the disorder note this.

In the late 1990s, researchers published the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But many first go to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need greater 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 early 2021; a calm advisor guided me through oxygen treatment and medication until the attack eased.

Official guidelines on management advise that patients are offered high-flow oxygen and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of well-known people.

But consultant neurologists believe the guidance need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle determines the treatment.” Short bouts with infrequent episodes are managed with abortive treatment alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that reduces nerve signals.

The official guidance need revising to reflect a