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It was a gloomy weekday morning in September 2016. I was working as a educator, attempting to manage a new class, when a sudden pain erupted behind my one eye. This was followed by rapid jolts, like lightning bolts. As the school day came and went, the discomfort subsided and then returned 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 cold water. I took aspirin, but the agony remained unbearable.

The attacks returned repeatedly that fall, and again in the spring, soon forming an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

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

About 1 in 1000 individuals are affected by the disorder, and males are more frequently diagnosed. Cluster headaches usually begin with abrupt, severe agony focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in seasonal bouts; others have chronic cluster headaches, defined by the lack of extended symptom-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the figure dropped to four percent when they were pain-free.

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 bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to many triggers, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her attacks as drunken episodes. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize life around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical healing records propose bizarre treatments for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with therapies including herbal concoctions to other, more folk cures.

It was a European doctor who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.

The disorder were only officially recognised by global headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the head. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, scientists released the findings of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, published in a major medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being correctly identified in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other primary head pain conditions, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which side do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She thinks dentists still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the episode passed.

Official guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of well-known individuals.

But consultant specialists believe the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Brief cycles with infrequent attacks are handled with abortive therapy alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve signals.

The national guidelines need updating to reflect a