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It was a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a intense sensation erupted behind my one eye. This was followed by rapid stabs, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then came back with increased force. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and once more in the spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could predict the pattern: aura in the morning, early twinges on the train, full-blown agony in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically begin with intense discomfort around a single eye that lasts up to several hours.

About 1 in 1000 people suffer by the condition, and males are more often diagnosed. Cluster headaches typically start with abrupt, excruciating agony focused on one eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in periodic cycles; some patients have continuous cluster headaches, defined by the absence of long pain-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster patients reported thoughts of self-harm amid bouts; the figure dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, like several triggers, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national hospital.

Nevertheless, the failure to plan life around unpredictable attacks took its effect. She especially disliked being unable to plan social events, 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 steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They linked the ailment to an malevolent entity who attacked his victims' heads.

Ancient medical texts propose unusual remedies for what some observers would describe as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with therapies including herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the first detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing daily at specific hours”.

The disorder were only formally classified by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the head. Prominent specialists in treating the disorder note this.

In the late 1990s, scientists released 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 hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in recently, after a physician looked up his complaints.

Neurologists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other common head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in early 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the attack passed.

Official guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently soothes the attacks of some people.

But consultant specialists believe the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle determines the approach.” Brief bouts with infrequent attacks are handled with acute therapy only. Longer or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that decreases nerve activity.

The official guidance need updating to reflect a