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It was a dreary weekday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a intense pain bloomed behind my right eye. It was followed by quick jolts, reminiscent of electric shocks. As the school day came and went, the pain subsided and then returned with increased intensity. Four times that day I left a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches returned frequently that autumn, and again in the spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could predict the routine: aura in the shower, early twinges on the train, full-on pain in class by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense discomfort around a single eye that persists up to three hours.

Approximately one in 1,000 individuals suffer by the disorder, and men are more frequently diagnosed. Attacks typically begin with abrupt, excruciating pain around a single eye that reaches its peak within minutes and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in periodic cycles; some patients have continuous attacks, defined by the absence of extended symptom-free periods.

What unites patients is the intensity. One study scored the pain at 9.7 10, more severe than bone fractures or other conditions. A separate found a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like many triggers, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a national hospital.

Still, the inability to organize life around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, 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 robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described across history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the ailment to an evil spirit who attacked his victims' heads.

Ancient healing texts suggest bizarre remedies for what modern experts would describe as a migraine. In the medieval times, migraine was identified as a separate condition, with treatments including bloodletting to other, more superstitious cures.

It was a European doctor who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially recognised by international medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the brain. Prominent specialists in treating the condition explain this.

In the late 1990s, scientists published the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, featured in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which side do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor guided me through oxygen treatment and drugs until the episode eased.

National guidance on treatment advise that sufferers are offered high-flow oxygen and/or a specific drug administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of well-known individuals.

But consultant specialists argue the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Short cycles with occasional episodes are managed with abortive therapy alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that reduces nerve signals.

The national guidance need updating to reflect a