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It began on a overcast weekday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sharp sensation sprang behind my one eye. It was followed by rapid stabs, reminiscent of lightning bolts. As each class came and went, the pain eased and then came back with greater force. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I took aspirin, but the pain remained unbearable.

The headaches returned frequently that fall, and again in the spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-on agony in the classroom by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically start with severe discomfort around a single eye that persists up to several hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more frequently diagnosed. Attacks typically start with sudden, excruciating pain around a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in seasonal bouts; others have continuous attacks, characterized by the lack of long pain-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another found 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the figure fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to many causes, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often mistook her episodes as drunken episodes. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to plan life around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis 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 recalls 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 earliest description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the disease to an malevolent entity who afflicted his victims' heads.

Historical healing records propose bizarre remedies for what some experts would describe as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first comprehensive description 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 specific hours”.

The disorder were only officially recognised by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the head. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, scientists released the results of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, featured in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks 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 four operations before eventually being correctly identified in 2014, after a physician researched his complaints.

Specialists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by eliminating other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced the condition for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need much more education. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an bout in 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the episode eased.

Official guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific drug administered by injection. No tablets or opioids should be used. Prophylactic choices 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 clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Brief cycles with infrequent episodes are managed with abortive treatment alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many 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 signals.

The official guidelines need revising to reflect a