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It was a gloomy Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden sensation sprang behind my right eye. This was followed by rapid stabs, like electric shocks. As the school day progressed, the pain eased and then came back with increased force. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unbearable.

The headaches returned repeatedly that fall, and again in the spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-blown pain in the classroom by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with severe discomfort behind a single eye that persists up to three hours.

About one in 1,000 people suffer by the disorder, and males are more frequently affected. Cluster headaches usually begin with abrupt, excruciating agony around a single eye that reaches its peak within minutes and lasts for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in periodic cycles; some patients have chronic cluster headaches, characterized by the lack of long pain-free periods.

What unites patients is the intensity. One research paper rated the pain at 9.7 10, higher than bone fractures or other conditions. Another found 64% of cluster patients experienced suicidal thoughts amid attacks; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to many triggers, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national hospital.

Still, the failure to organize life around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the disease to an malevolent entity who afflicted his victims' heads.

Ancient medical texts suggest bizarre remedies for what some experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with therapies ranging from bloodletting to other, more folk remedies.

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

The disorder were only officially classified by international medical committees in the late 1980s. 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 condition note this.

In 1998, researchers released the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before finally being diagnosed in 2014, after a doctor researched his complaints.

Neurologists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other primary headache conditions, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which side do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in 2021; a reassuring advisor guided them through oxygen treatment and medication until the episode eased.

Official guidance on management recommend that patients are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the bouts of well-known people.

But consultant specialists believe the guidance need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle determines the treatment.” Brief cycles with occasional episodes are handled with abortive treatment only. Longer or more severe bouts require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a