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It began on a overcast Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sharp sensation bloomed behind my right eye. This was followed by quick jolts, like electric shocks. As the school day came and went, the discomfort eased 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 cold water. I tried ibuprofen, but the pain remained unrelenting.

The attacks appeared frequently that autumn, and once more in spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-on pain in the classroom by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with severe discomfort around a single eye that lasts for several hours.

Approximately one in 1,000 people are affected by the condition, and males are more frequently affected. Cluster headaches typically start with abrupt, excruciating agony around one eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in seasonal cycles; some patients have chronic cluster headaches, characterized by the absence of long pain-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 10, higher than broken bones or other conditions. Another discovered 64% of cluster headache patients experienced thoughts of self-harm during bouts; the figure dropped 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 two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like several causes, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Support eventually came from her parent 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 hid her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan life around unpredictable attacks took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe 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 major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Historical healing records suggest unusual treatments for what some observers would describe as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with treatments including bloodletting to other, more folk remedies.

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

Cluster headaches were only formally classified by international medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Leading experts in diagnosing the condition note this.

In 1998, researchers released the findings of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before finally being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But many 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 20s, she had her teeth pulled because dentists misinterpreted her pain. She thinks the dental profession still need much more 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 early 2021; a calm volunteer talked me through oxygen therapy and medication until the episode passed.

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

But consultant neurologists believe the guidance need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Brief cycles with infrequent episodes are handled with abortive therapy alone. Longer or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a