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It was a overcast weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sudden pain sprang behind my one eye. This was followed by quick jolts, like electric shocks. As the school day came and went, the pain subsided and then returned with greater force. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and again in spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-blown agony in class by 9.30am. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically start with intense pain around one eye that lasts for several hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more often diagnosed. Attacks typically begin with sudden, excruciating agony around a single eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in seasonal cycles; some patients have continuous attacks, defined by the absence of extended pain-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster patients experienced suicidal thoughts amid attacks; the figure fell to four percent when they were not in pain.

One patient, 74, a chronic patient from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to several causes, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a national hospital.

Nevertheless, the inability to plan daily activities around unpredictable attacks took its effect. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across the ages. “The first description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.

Ancient medical records suggest bizarre treatments for what modern observers would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with treatments ranging from bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.

The disorder were only officially recognised by global medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the brain. Leading experts in diagnosing the condition explain this.

In 1998, scientists published the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, diagnosis remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left 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.

Specialists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do signs appear? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority 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 pulled because dental professionals misunderstood her pain. She believes dentists still need greater education. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer talked me through oxygen therapy and medication until the attack eased.

National guidance on treatment advise that patients are offered high-dose oxygen and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of some individuals.

But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the bout determines the approach.” Short bouts with occasional episodes are handled with abortive therapy alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a