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It was a gloomy Monday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense pain sprang behind my one eye. Then came rapid stabs, similar to electric shocks. As each class came and went, the pain subsided and then returned with greater intensity. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and again in the spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-blown agony in class by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

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

About one in 1,000 people suffer by the disorder, and males are more frequently diagnosed. Attacks usually start with abrupt, excruciating pain around one eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or face sweating. I have the episodic form, which arrives in seasonal cycles; some patients have chronic attacks, defined by the absence of extended pain-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the figure dropped to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated episodes. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize life around erratic attacks took its effect. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis 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 winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.

Historical healing records suggest bizarre remedies for what some experts would classify as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with therapies including herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only officially classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Leading specialists in diagnosing the disorder note this.

In 1998, scientists published the findings of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer talked them through oxygen therapy and medication until the episode eased.

National guidelines on management advise that patients are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But consultant specialists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout determines the treatment.” Short cycles with occasional attacks are managed with abortive therapy only. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that reduces nerve activity.

The national guidelines need revising to reflect a