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It was a dreary Monday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain bloomed behind my right eye. It was followed by quick stabs, reminiscent of electric shocks. As each class progressed, the discomfort subsided and then returned with increased intensity. Four times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and again in the spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could predict the pattern: aura in the shower, early pangs on the commute, full-on pain in class by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe pain around a single eye that lasts up to several hours.

About one in 1,000 people suffer by the disorder, and men are more often affected. Cluster headaches typically start with sudden, excruciating pain focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in periodic bouts; others have chronic attacks, defined by the lack of extended pain-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found 64% of cluster headache patients reported suicidal thoughts amid attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to several triggers, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to plan daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented across the ages. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the ailment to an evil spirit who attacked his victims' heads.

Historical healing texts propose unusual treatments for what modern experts would classify as a migraine. In the medieval times, severe headache was identified as a separate disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially recognised by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the brain. Leading experts in diagnosing the disorder note this.

In the late 1990s, scientists published the findings of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, published in a major medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in recently, after a doctor looked up his complaints.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other common head pain conditions, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which side do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first go to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from the condition for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in early 2021; a calm volunteer guided them through oxygen therapy and drugs until the episode passed.

National guidelines on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of some people.

But consultant specialists argue the guidance need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout dictates the approach.” Short bouts with occasional episodes are managed with abortive therapy only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a