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It was a overcast Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp pain sprang behind my one eye. This was followed by quick jolts, reminiscent of electric shocks. As the school day came and went, the pain eased and then came back with greater force. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.

The attacks returned frequently that fall, and once more in spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-on pain in the classroom by 9.30am. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with intense pain around a single eye that lasts for several hours.

About one in 1,000 people suffer by the disorder, and males are more often diagnosed. Attacks typically start with sudden, excruciating agony focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which arrives in seasonal bouts; some patients have chronic cluster headaches, defined by the absence of extended symptom-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster patients experienced thoughts of self-harm amid attacks; the figure fell to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like several triggers, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives 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 understanding person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the failure to organize life around unpredictable attacks took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the disease to an evil spirit who afflicted his sufferers' heads.

Historical medical texts suggest unusual remedies for what modern experts would classify as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a European doctor who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.

Cluster headaches were only officially classified by global headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery which delivers blood to the head. Prominent specialists in treating 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 journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris'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 underwent multiple operations before finally being correctly identified in recently, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in 2021; a calm volunteer talked me through oxygen treatment and drugs until the episode eased.

National guidance on treatment recommend that patients are offered high-dose oxygen and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly soothes the attacks of well-known individuals.

But leading specialists believe the guidance need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Brief cycles with infrequent episodes are handled with abortive treatment only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a