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It began on a overcast Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a intense pain bloomed behind my right eye. This was followed by rapid jolts, similar to electric shocks. As each class came and went, the pain subsided and then came back with greater intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I took paracetamol, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and once more in the spring, soon forming an annual pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the morning, early twinges on the commute, full-on pain in the classroom by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with intense pain around a single eye that lasts for several hours.

Approximately one in 1,000 people suffer by the disorder, and males are more frequently affected. Attacks typically begin with abrupt, severe agony around a single eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, daily or several 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 cycles; others have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What connects patients is the intensity. One research paper scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster headache patients reported suicidal thoughts amid attacks; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like many causes, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the inability to plan life around unpredictable attacks took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, 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 liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented throughout history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Ancient medical records suggest unusual treatments for what modern experts would describe as a migraine. In the middle ages, migraine was identified as a distinct disorder, with therapies including bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.

The disorder were only officially recognised by international headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Leading experts in treating the condition explain this.

In the late 1990s, researchers published the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had multiple operations before eventually being correctly identified in recently, after a doctor looked up his complaints.

Neurologists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain disorders, such as migraine, before diagnosing the disorder. A thorough history is essential: on which side do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, 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 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a calm volunteer talked them through oxygen treatment and drugs until the attack passed.

National guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But consultant specialists believe the guidance need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout determines the approach.” Brief cycles with occasional episodes are managed with acute therapy alone. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that reduces nerve activity.

The official guidance need revising to reflect a