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It began on a overcast weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sudden pain erupted behind my one eye. This was followed by rapid stabs, like lightning bolts. As the school day came and went, the pain subsided and then returned with greater force. Multiple times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.

The headaches returned frequently that fall, and again in spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-blown agony in class by 9.30am. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with severe discomfort behind one eye that lasts for several hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more frequently affected. Attacks typically begin with abrupt, excruciating agony around a single eye that reaches its peak within minutes and lasts for as long as three hours. Episodes 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 seasonal cycles; others have continuous cluster headaches, defined by the absence of extended pain-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster headache patients reported thoughts of self-harm amid attacks; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, like many triggers, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan life around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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

Historical healing texts suggest unusual remedies for what modern experts would classify as a migraine. In the medieval times, migraine was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only officially recognised by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the head. Leading experts in diagnosing the disorder note this.

In 1998, researchers released the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple operations before finally being correctly identified in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are seldom 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 tension-type headache, before diagnosing the disorder. A detailed history is essential: on which part of the head do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She believes dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer guided me through oxygen treatment and medication until the attack passed.

Official guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of well-known people.

But consultant specialists believe the guidance need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout determines the approach.” Brief bouts with infrequent attacks are handled with acute treatment only. More prolonged or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that reduces nerve signals.

The national guidance need updating to reflect a