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It was a gloomy weekday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sudden pain sprang behind my right eye. It was followed by rapid shocks, similar to electric shocks. As each class progressed, the pain subsided and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and again in spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-on pain in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense discomfort around one eye that lasts up to several hours.

About one in 1,000 individuals are affected by the condition, and males are more often diagnosed. Attacks typically begin with sudden, excruciating agony focused on one eye that reaches its peak within a short time and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in seasonal bouts; others have chronic cluster headaches, characterized by the absence of long pain-free periods.

What unites sufferers is the severity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another found 64% of cluster headache patients reported suicidal thoughts amid bouts; the number fell to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes 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 condition deteriorated through her youth. Drinking in her teens, like many triggers, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken episodes. Understanding finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Still, the failure to organize life around erratic pain took its effect. She particularly disliked being unable to plan outings, 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 simple liberties 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 portable toilet.

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Headaches have been described throughout the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the ailment to an evil entity who attacked his victims' heads.

Ancient medical records propose unusual remedies for what modern observers would classify as a migraine. In the medieval times, migraine was identified as a separate condition, with therapies ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.

The disorder were only formally recognised by international medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the head. Prominent experts in treating the disorder note this.

In 1998, researchers released the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, identification remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in 2014, after a doctor researched his complaints.

Specialists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had 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 much more education. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an attack in early 2021; a calm advisor guided me through oxygen treatment and medication until the attack passed.

Official guidance on management advise that sufferers are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of some individuals.

But consultant neurologists argue the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle dictates the treatment.” Brief cycles with infrequent attacks are managed with abortive treatment alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that reduces nerve activity.

The national guidance need updating to reflect a