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It was a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden pain erupted behind my one eye. This was followed by quick shocks, reminiscent of lightning bolts. As each class progressed, the pain eased and then came back with increased intensity. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The attacks returned frequently that autumn, and again in spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the shower, early twinges on the commute, full-on pain in class by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with intense pain around one eye that persists for three hours.

Approximately 1 in 1000 people are affected by the condition, and men are more often diagnosed. Attacks usually begin with abrupt, excruciating agony focused on one 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 tearing eyes, drooping eyelids or face sweating. I have an episodic type, which occurs in periodic bouts; others have chronic cluster headaches, characterized by the lack of extended pain-free periods.

What unites sufferers is the intensity. One research paper rated the sensation at 9.7 10, higher than broken bones or other conditions. A separate discovered 64% of cluster patients reported suicidal thoughts during bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like several causes, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Still, the inability to plan life around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers 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 first description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient healing records propose bizarre remedies for what modern experts would classify as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with therapies including herbal concoctions to other, more superstitious remedies.

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

Cluster headaches were only formally classified by global medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Leading experts in diagnosing the disorder note this.

In 1998, scientists published the findings of a research project 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 activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in recently, after a physician researched his complaints.

Specialists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which side do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced the condition for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an attack in 2021; a reassuring advisor guided them through oxygen therapy and medication until the attack passed.

Official guidance on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly soothes the bouts of some people.

But leading neurologists believe the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle dictates the approach.” Brief cycles with occasional episodes are managed with abortive therapy only. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a