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It began on a gloomy Monday morning in September 2016. I was working as a teacher, trying to settle a new class, when a intense pain sprang behind my one eye. It was followed by quick stabs, reminiscent of electric shocks. As each class progressed, the discomfort eased and then came back with greater force. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The headaches appeared frequently that fall, and again in spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-on agony in class by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with intense pain behind a single eye that lasts for three hours.

About one in 1,000 individuals suffer by the disorder, and men are more frequently affected. Cluster headaches usually start with sudden, severe agony focused on one eye that reaches its peak within minutes and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in seasonal bouts; others have continuous attacks, defined by the lack of long pain-free periods.

What unites patients is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to many triggers, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the failure to organize life around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs 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 facility.

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Headaches have been described across the ages. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the disease to an evil entity who afflicted his victims' heads.

Ancient healing records suggest unusual remedies for what some observers would describe as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with therapies including bloodletting to other, more folk cures.

It was a European physician who provided the initial detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only formally recognised by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the head. Prominent specialists in diagnosing the disorder explain this.

In 1998, researchers released the findings of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. 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 discomfort, and a reduction when they felt better.

In spite of such progress, identification remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in 2014, after a physician researched his complaints.

Specialists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other primary head pain disorders, such as migraine, before confirming the disorder. A thorough history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a calm volunteer guided them through oxygen therapy and medication until the attack eased.

National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of well-known individuals.

But leading neurologists believe the guidance need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the bout determines the treatment.” Short bouts with occasional episodes are handled with abortive treatment only. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that decreases nerve signals.

The national guidance need revising to reflect a