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It was a dreary Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp pain bloomed behind my right eye. Then came rapid stabs, like lightning bolts. As each class progressed, the discomfort eased and then came back with increased force. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unbearable.

The headaches returned repeatedly that autumn, and once more in spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could predict the routine: aura in the morning, early twinges on the train, full-blown agony in class by 9.30am. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with intense discomfort around one eye that lasts up to several hours.

Approximately one in 1,000 people suffer by the disorder, and males are more often diagnosed. Cluster headaches usually start with sudden, excruciating agony focused on one eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, defined by the lack of extended pain-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts during bouts; the number fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like several causes, made things more intense. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as drunken episodes. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her condition. 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 failure to plan daily activities around unpredictable pain took its effect. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the disease to an malevolent entity who attacked his victims' heads.

Historical healing records propose unusual remedies for what some experts would classify as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with therapies including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by international headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the brain. Leading specialists in treating the disorder note this.

In 1998, researchers released the results of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, published in a prominent medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, diagnosis remains delayed. One man's symptoms started in the 1980s 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 2014, after a physician looked up his complaints.

Specialists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other primary head pain disorders, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which side do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But many first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an attack in early 2021; a calm advisor talked me through oxygen therapy and drugs until the attack eased.

Official guidelines on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of some people.

But leading specialists believe the guidance need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout dictates the treatment.” Brief cycles with occasional episodes are managed with acute treatment alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that reduces nerve activity.

The official guidelines need revising to reflect a