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It was a gloomy weekday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense sensation sprang behind my right eye. This was followed by quick stabs, reminiscent of lightning bolts. As the school day progressed, the discomfort eased and then returned with increased force. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unbearable.

The attacks returned frequently that fall, and again in the spring, soon establishing an yearly 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 train, full-blown pain in class by 9.30am. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically begin with intense pain behind a single eye that persists for three hours.

Approximately one in 1,000 people suffer by the disorder, and men are more often diagnosed. Attacks usually begin with abrupt, severe pain around a single eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in periodic cycles; some patients have continuous attacks, characterized by the absence of long symptom-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found 64% of cluster headache patients reported thoughts of self-harm amid attacks; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, 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 condition deteriorated through childhood. Alcohol in her adolescence, similar to many triggers, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist 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 looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the ailment to an evil spirit who attacked his victims' heads.

Ancient medical texts propose unusual remedies for what modern observers would classify as a headache disorder. In the middle ages, migraine was identified as a separate condition, with treatments including bloodletting to other, more superstitious remedies.

It was a European doctor who provided the first detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.

The disorder were only formally recognised by global headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major artery that supplies blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In 1998, scientists released the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of 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 sinus problems; he underwent multiple operations before eventually being correctly identified in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other common headache conditions, such as migraine, before confirming the disorder. A thorough patient history is essential: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in 2021; a calm advisor talked me through oxygen treatment and drugs until the attack passed.

National guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of some people.

But consultant neurologists argue the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Brief cycles with occasional episodes are handled with acute therapy only. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a