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It was a overcast weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a intense pain sprang behind my right eye. It was followed by quick stabs, reminiscent of electric shocks. As the school day progressed, the discomfort subsided and then returned with greater force. Four times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and again in spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could predict the routine: aura in the morning, early pangs on the commute, full-on pain in the classroom by mid-morning. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with severe discomfort around one eye that lasts for several hours.

About one in 1,000 individuals are affected by the condition, and men are more often affected. Cluster headaches typically start with sudden, excruciating agony around one eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in periodic bouts; others have continuous attacks, defined by the absence of extended pain-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like many causes, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as drunken behavior. Understanding eventually came from her parent 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 condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Still, the failure to plan life around erratic attacks took its effect. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the small liberties 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 facility.

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Headaches have been documented across the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the disease to an malevolent spirit who attacked his victims' heads.

Historical healing records propose unusual treatments for what modern experts would classify as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments including bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially classified by global medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the head. Prominent experts in diagnosing the condition explain this.

In 1998, scientists released the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a prominent medical publication, showed activation 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. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But many first go to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a calm advisor guided me through oxygen treatment and drugs until the attack eased.

Official guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the attacks of some individuals.

But leading neurologists argue the guidance need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Short cycles with occasional attacks are handled with acute therapy alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that decreases nerve signals.

The official guidelines need updating to reflect a