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It was a dreary weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sharp pain erupted behind my right eye. Then came rapid stabs, similar to lightning bolts. As each class came and went, the pain subsided and then returned with greater intensity. Four times that day I left a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The headaches returned frequently that fall, and once more in spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the train, full-on pain in the classroom by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense discomfort behind a single eye that lasts for several hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more often diagnosed. Cluster headaches typically begin with abrupt, severe agony around one eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal cycles; some patients have chronic cluster headaches, characterized by the lack of long pain-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 10, higher than bone fractures or other conditions. Another found 64% of cluster headache patients experienced suicidal thoughts during bouts; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like several triggers, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated behavior. Understanding finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the failure to plan life around erratic attacks took its toll. 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 incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Ancient healing texts suggest bizarre remedies for what modern observers would classify as a migraine. In the middle ages, migraine was identified as a distinct condition, with therapies including bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only formally recognised by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the head. Prominent experts in diagnosing the disorder 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 results, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such progress, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in recently, after a physician researched his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But many first go to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in early 2021; a reassuring advisor guided me through oxygen therapy and drugs until the episode passed.

Official guidelines on management advise that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the bouts of well-known individuals.

But consultant specialists argue the guidance need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the bout determines the treatment.” Short bouts with infrequent episodes are managed with acute treatment only. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that decreases nerve activity.

The official guidelines need revising to reflect a