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It was a overcast 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 right eye. It was followed by quick stabs, reminiscent of lightning bolts. As each class came and went, the pain subsided and then returned with greater intensity. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.

The attacks returned frequently that autumn, and once more in spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-blown agony in the classroom by 9.30am. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often begin with intense discomfort around a single eye that lasts for several hours.

About 1 in 1000 individuals are affected by the condition, and men are more often affected. Cluster headaches usually start with abrupt, severe pain around one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal bouts; some patients have continuous attacks, defined by the absence of extended pain-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the figure fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic 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 put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like many triggers, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan daily activities around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Ancient healing texts suggest bizarre treatments for what modern experts would describe as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with therapies including bloodletting to other, more folk remedies.

It was a European physician who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only officially classified by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the head. Prominent experts in diagnosing the condition note this.

In the late 1990s, researchers released the findings of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, featured in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, identification remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache disorders, such as migraine, before confirming the disorder. A detailed patient history is essential: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first go to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her pain. She believes dentists still need much more education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring advisor talked them through oxygen therapy and medication until the attack passed.

National guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the attacks of well-known individuals.

But leading neurologists argue the guidance need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle dictates the approach.” Brief bouts with occasional episodes are handled with abortive therapy only. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a