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It began on a dreary Monday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sudden pain sprang behind my one eye. This was followed by rapid shocks, similar to electric shocks. As the school day came and went, the pain subsided and then returned with greater intensity. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that autumn, and again in the spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-blown pain in the classroom by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically start with intense discomfort around one eye that persists up to several hours.

About 1 in 1000 people suffer by the condition, and men are more often affected. Attacks usually begin with sudden, severe agony around one eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in periodic cycles; others have chronic attacks, defined by the lack of long symptom-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the figure fell to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to several causes, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to plan daily activities around unpredictable attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable 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 remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Ancient medical records suggest unusual treatments for what modern observers would describe as a migraine. In the medieval times, migraine was recognised as a distinct condition, with treatments including bloodletting to other, more folk remedies.

It was a European doctor who provided the first comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only formally classified by international headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the head. Leading experts in diagnosing the disorder explain this.

In 1998, researchers released the findings of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, published in a major 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 advances, diagnosis remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before finally being correctly identified in recently, after a doctor looked up his complaints.

Specialists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by ruling out other primary headache conditions, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches 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 misinterpreted her pain. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring advisor guided them through oxygen therapy and medication until the episode eased.

Official guidance on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But leading neurologists believe the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Brief bouts with occasional attacks are managed with abortive treatment alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a