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It was a overcast Monday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain sprang behind my one eye. It was followed by rapid stabs, similar to electric shocks. As the school day progressed, the discomfort eased and then came back with increased intensity. Four times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks returned frequently that fall, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could anticipate the routine: aura in the morning, early twinges on the train, full-on pain in the classroom by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically begin with intense discomfort behind a single eye that lasts for several hours.

About one in 1,000 people are affected by the condition, and men are more often diagnosed. Attacks typically start with sudden, excruciating pain focused on a single eye that peaks within a short time 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 perspiration. I have an episodic type, which arrives in seasonal cycles; others have continuous attacks, characterized by the absence of long symptom-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 10, higher than broken bones or other conditions. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the number dropped to four percent when they were not in pain.

One patient, 74, a chronic sufferer from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, like several triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize daily activities around erratic pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described across history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the disease to an evil spirit who attacked his victims' heads.

Ancient medical texts suggest bizarre remedies for what some observers would classify as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with therapies including bloodletting to other, more folk remedies.

It was a European physician who provided the first detailed account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.

The disorder were only formally classified 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 blood vessel that delivers blood to the brain. Prominent experts in treating the condition explain this.

In the late 1990s, researchers published the results of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, published in a major journal, 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 felt better.

In spite of such progress, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four operations before finally being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other primary head pain conditions, such as migraine, before confirming the disorder. A thorough history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a reassuring volunteer guided them through oxygen treatment and medication until the attack passed.

Official guidance on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.

But leading neurologists believe the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Short bouts with infrequent attacks are managed with abortive treatment alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that decreases nerve activity.

The official guidance need updating to reflect a