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It began on a overcast weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. It was followed by quick stabs, similar to electric shocks. As the school day progressed, the discomfort subsided and then returned with increased intensity. Multiple times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.

The attacks appeared frequently that fall, and once more in spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the commute, full-blown pain in class by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with severe pain behind a single eye that persists up to several hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more often diagnosed. Cluster headaches typically begin with abrupt, excruciating agony around one eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in seasonal cycles; some patients have chronic attacks, characterized by the absence of long pain-free periods.

What unites sufferers is the intensity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients reported thoughts of self-harm during attacks; the figure dropped to 4% when they were pain-free.

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

Her family often interpreted her episodes as intoxicated behavior. Support finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to plan daily activities around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Ancient healing texts propose bizarre treatments for what some experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate condition, with treatments including bloodletting to other, more folk cures.

It was a European doctor who provided the first detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by international medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the brain. Prominent specialists in treating the disorder explain this.

In 1998, researchers released the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four surgeries before eventually being correctly identified in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She believes the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the episode passed.

Official guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But leading neurologists believe the guidance need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Short cycles with occasional attacks are managed with abortive treatment alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a