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It was a overcast Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. It was followed by rapid jolts, reminiscent of electric shocks. As each class came and went, the discomfort eased and then came back with increased 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 tried ibuprofen, but the agony remained unbearable.

The headaches returned repeatedly that autumn, and once more in the spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the train, full-on agony in class by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with severe pain behind a single eye that lasts for several hours.

Approximately one in 1,000 people suffer by the disorder, and males are more frequently diagnosed. Cluster headaches usually start with abrupt, excruciating agony around one eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in periodic cycles; some patients have continuous attacks, defined by the lack of extended pain-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster patients reported thoughts of self-harm amid attacks; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to many triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize life around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable 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 simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Historical medical texts suggest unusual remedies for what some experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with therapies including bloodletting to other, more folk remedies.

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

The disorder were only officially recognised by global headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Leading specialists in treating the disorder explain this.

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

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other primary head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an attack in early 2021; a calm advisor talked me through oxygen therapy and medication until the attack eased.

Official guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of some individuals.

But leading neurologists argue the guidance need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Brief cycles with infrequent attacks are handled with acute treatment only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that decreases nerve activity.

The national guidelines need updating to reflect a