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It began on a overcast weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp pain sprang behind my right eye. Then came quick jolts, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then returned with greater intensity. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the agony remained unrelenting.

The attacks appeared frequently that autumn, and once more in the spring, soon forming an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-blown agony in the classroom by 9.30am. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically start with intense pain around a single eye that persists for three hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more frequently affected. Attacks usually begin with sudden, excruciating pain focused on a single eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in periodic bouts; others have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered 64% of cluster patients reported thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to many triggers, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated behavior. 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 concealed her condition. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.

Nevertheless, the inability to plan life around unpredictable attacks took its effect. She especially hated 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 paralysis caused by the worst episodes. “It steals from you of the small 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 facility.

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Headaches have been described throughout history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the ailment to an evil entity who attacked his sufferers' heads.

Historical healing records suggest bizarre treatments for what modern observers would describe as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with treatments including herbal concoctions to other, more folk remedies.

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

The disorder were only formally recognised by international medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the head. Prominent specialists in diagnosing the condition note this.

In 1998, scientists published the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is essential: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has experienced 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 dental professionals misunderstood her pain. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the attack passed.

National guidance on treatment advise that patients are offered high-flow oxygen and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of well-known individuals.

But consultant neurologists argue the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle dictates the approach.” Short bouts with occasional attacks are handled with acute therapy alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that reduces nerve signals.

The official guidance need revising to reflect a