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It was a dreary weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden pain erupted behind my right eye. Then came quick jolts, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then came back with increased intensity. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I tried aspirin, but the pain remained unrelenting.

The headaches returned repeatedly that fall, and again in the spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-on agony in class by 9.30am. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.

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

Approximately one in 1,000 people are affected by the condition, and males are more frequently diagnosed. Cluster headaches typically begin with sudden, excruciating agony focused on a single eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in periodic bouts; others have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were not in pain.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, similar to many causes, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a national hospital.

Nevertheless, the inability to organize daily activities around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs 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 earliest 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 entity who attacked his victims' heads.

Ancient medical texts suggest unusual treatments for what some experts would describe as a migraine. In the medieval times, severe headache was identified as a separate disorder, with treatments ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

The disorder were only formally classified by global medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Leading experts in treating the disorder explain this.

In 1998, scientists released the results of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other primary head pain conditions, such as migraine, before confirming the disorder. A thorough history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She thinks the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in 2021; a reassuring volunteer guided them through oxygen therapy and medication until the episode eased.

National guidance on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the attacks of well-known individuals.

But leading specialists believe the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle determines the treatment.” Brief cycles with infrequent attacks are handled with abortive treatment alone. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that decreases nerve activity.

The official guidelines need revising to reflect a