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It was a dreary weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden sensation bloomed behind my right eye. It was followed by quick stabs, similar to lightning bolts. As the school day came and went, the discomfort eased and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unbearable.

The attacks appeared frequently that autumn, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe discomfort behind one eye that lasts for three hours.

About one in 1,000 individuals suffer by the condition, and men are more frequently affected. Attacks usually start with abrupt, excruciating pain around a single eye that peaks 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, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal bouts; some patients have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the number fell to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks began 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 worsened through childhood. Drinking in her teens, similar to many triggers, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to plan daily activities around erratic pain took its effect. She particularly hated being unable to plan outings, 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 robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across history. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the disease to an evil entity who attacked his sufferers' heads.

Historical healing records propose bizarre treatments for what modern experts would classify as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with treatments including herbal concoctions to other, more superstitious cures.

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

Cluster headaches were only officially recognised by global headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Leading specialists in diagnosing the condition note this.

In 1998, researchers released the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before finally being diagnosed in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other primary head pain disorders, such as migraine, before confirming the disorder. A thorough history is essential: on which part of the head do signs occur? For how long? What season? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But many first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, 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 twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks dentists still need greater education. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an attack in early 2021; a calm volunteer talked them through oxygen treatment and medication until the episode eased.

Official guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of some people.

But leading neurologists argue the official guidelines need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout dictates the treatment.” Brief bouts with infrequent attacks are handled with acute treatment alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that reduces nerve activity.

The official guidance need revising to reflect a