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It was a dreary weekday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sharp sensation sprang behind my one eye. Then came rapid shocks, similar to lightning bolts. As each class progressed, the discomfort eased and then came back with greater force. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I tried aspirin, but the agony remained unbearable.

The attacks appeared frequently that autumn, and once more in spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the morning, early twinges on the train, full-blown pain in class by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense discomfort behind a single eye that persists up to several hours.

About one in 1,000 people are affected by the disorder, and men are more frequently affected. Cluster headaches typically begin with abrupt, severe pain focused on one eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in seasonal bouts; some patients have chronic attacks, defined by the lack of extended pain-free periods.

What connects patients is the severity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another found 64% of cluster patients reported thoughts of self-harm during bouts; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like several causes, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. Understanding eventually 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 moving, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the inability to organize life around erratic attacks 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 most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Ancient medical texts propose bizarre remedies for what modern observers would classify as a headache disorder. In the medieval times, migraine was identified as a separate condition, with treatments ranging from bloodletting to other, more folk cures.

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

The disorder were only officially classified by international medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the brain. Leading experts in treating the condition note this.

In the late 1990s, scientists released the findings of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache disorders, such as migraine, before confirming the disorder. A thorough history is crucial: on which side do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an bout in early 2021; a calm advisor guided them through oxygen therapy and drugs until the attack eased.

National guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the bouts of some people.

But leading neurologists believe the guidance need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Short bouts with infrequent episodes are handled with abortive treatment only. Longer or more intense periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve signals.

The official guidelines need revising to reflect a