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It was a gloomy weekday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden pain bloomed behind my right eye. Then came rapid jolts, like electric shocks. As the school day progressed, the discomfort eased and then came back with greater intensity. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I tried aspirin, but the pain remained unbearable.

The headaches appeared repeatedly that autumn, and once more in the spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-blown pain in class by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe discomfort around a single eye that persists for several hours.

About 1 in 1000 individuals suffer by the disorder, and men are more often diagnosed. Cluster headaches usually begin with sudden, excruciating pain focused on a single eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic bouts; others have chronic cluster headaches, characterized by the absence 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 discovered 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the number dropped to 4% when they were pain-free.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to several causes, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her attacks as drunken episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the failure to plan life around unpredictable pain 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 paralysis caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the disease to an evil entity who afflicted his victims' heads.

Historical healing records suggest bizarre remedies for what some experts would classify as a migraine. In the middle ages, migraine was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a European physician who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.

Cluster headaches were only formally recognised by international medical committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the head. Leading experts in diagnosing the condition explain this.

In the late 1990s, researchers published the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in 2014, after a physician researched his complaints.

Specialists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other primary head pain conditions, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which side do signs appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a calm advisor talked them through oxygen treatment and drugs until the episode passed.

National guidelines on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But consultant neurologists argue the official guidelines need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Short bouts with occasional attacks are handled with acute therapy alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the head where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a