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It began on a gloomy Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a intense pain sprang behind my one eye. Then came quick jolts, like lightning bolts. As the school day progressed, the pain subsided and then returned with greater force. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and once more in spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-blown agony in the classroom by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with intense pain behind one eye that lasts for three hours.

About one in 1,000 people are affected by the disorder, and men are more often diagnosed. Attacks usually begin with sudden, severe agony around a single eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in periodic bouts; some patients have chronic cluster headaches, characterized by the absence of long pain-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 10, more severe than broken bones or other conditions. A separate found 64% of cluster patients reported thoughts of self-harm amid attacks; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to many triggers, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated episodes. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed 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 national hospital.

Nevertheless, the failure to plan life around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs 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 described throughout history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.

Ancient medical records propose unusual treatments for what modern observers would describe as a migraine. In the middle ages, severe headache was identified as a separate disorder, with treatments including bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially recognised by global headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the brain. Leading specialists in treating the condition note this.

In the late 1990s, researchers released the findings of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He proceeds by eliminating other primary headache disorders, such as migraine, before confirming the disorder. A detailed history is essential: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an bout in early 2021; a calm advisor guided them through oxygen treatment and drugs until the attack eased.

Official guidelines on treatment recommend that patients are offered high-dose oxygen and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of some individuals.

But consultant specialists argue the official guidelines need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the bout determines the approach.” Brief cycles with infrequent attacks are handled with acute therapy only. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that decreases nerve activity.

The national guidelines need updating to reflect a