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It was a gloomy weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sharp pain erupted behind my one eye. This was followed by quick shocks, similar to lightning bolts. As the school day progressed, the discomfort eased and then came back with increased force. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cool water. I tried aspirin, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and again in spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-blown agony in the classroom by 9.30am. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense pain behind one eye that lasts for several hours.

Approximately one in 1,000 people suffer by the condition, and males are more frequently diagnosed. Cluster headaches typically begin with sudden, excruciating pain around one eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in seasonal bouts; some patients have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, like many causes, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her episodes as drunken behavior. Support eventually 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 moving, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a specialist hospital.

Nevertheless, the failure to organize daily activities around unpredictable attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the disease to an malevolent spirit who afflicted his victims' heads.

Ancient medical records suggest bizarre treatments for what modern observers would classify as a migraine. In the medieval times, migraine was identified as a distinct disorder, with therapies including bloodletting to other, more folk cures.

It was a European doctor who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.

The disorder were only officially recognised by global medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the head. Prominent specialists in treating the condition explain this.

In 1998, scientists released the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple operations before finally being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other primary head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She believes the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a reassuring volunteer talked them through oxygen treatment and medication until the episode eased.

National guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of well-known individuals.

But leading neurologists believe the official guidelines need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle determines the treatment.” Brief bouts with occasional episodes are managed with abortive treatment alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve signals.

The national guidance need revising to reflect a