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It began on a gloomy weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden pain erupted behind my one eye. Then came quick stabs, similar to electric shocks. As the school day progressed, the discomfort subsided and then returned with increased intensity. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The headaches returned frequently that fall, and once more in the spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could predict the routine: aura in the shower, early twinges on the commute, full-on agony in the classroom by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with intense discomfort behind a single eye that persists for three hours.

About one in 1,000 individuals are affected by the disorder, and men are more often affected. Cluster headaches typically begin with sudden, excruciating agony around a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in seasonal cycles; others have chronic attacks, characterized by the lack of extended pain-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 10, higher than broken bones or pancreatitis. A separate found 64% of cluster patients experienced suicidal thoughts amid bouts; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to several causes, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated 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 took office work after moving, but often hid her illness. She was fired from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a national hospital.

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

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Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.

Historical healing records propose bizarre treatments for what modern experts would describe as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with therapies ranging from bloodletting to other, more superstitious cures.

It was a European doctor who provided the first detailed description 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 specific hours”.

The disorder were only formally recognised by global medical committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the brain. Prominent specialists in treating the condition explain this.

In the late 1990s, scientists published the results of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains delayed. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other primary headache conditions, such as migraine, before diagnosing the disorder. A thorough history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But many first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an attack in early 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the attack passed.

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

But consultant specialists believe the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout dictates the treatment.” Brief cycles with infrequent episodes are handled with abortive treatment alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The national guidelines need updating to reflect a