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It began on a dreary weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a intense sensation bloomed behind my one eye. Then came quick stabs, like electric shocks. As the school day came and went, the discomfort subsided and then came back with greater force. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I took aspirin, but the agony remained unbearable.

The headaches returned frequently that autumn, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the train, full-blown pain in the classroom by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with severe pain behind a single eye that lasts for three hours.

About 1 in 1000 people suffer by the condition, and males are more often diagnosed. Attacks usually begin with abrupt, excruciating agony focused on a single eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in periodic cycles; some patients have chronic attacks, characterized by the absence of long symptom-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the number dropped to four percent when they were not in pain.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to several triggers, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to plan life around erratic attacks took its toll. She especially hated being unable to plan outings, 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 simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the ailment to an evil entity who attacked his victims' heads.

Ancient healing records suggest unusual treatments for what modern experts would classify as a migraine. In the middle ages, severe headache was identified as a separate condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only officially recognised by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the brain. Leading experts in diagnosing the condition explain this.

In 1998, scientists released the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other common headache disorders, such as migraine, before confirming cluster headaches. A detailed history is essential: on which side do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She believes the dental profession still need greater education. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an attack in 2021; a calm advisor talked them through oxygen treatment and drugs until the attack passed.

National guidelines on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of well-known individuals.

But leading neurologists believe the guidance need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Short bouts with infrequent episodes are managed with acute therapy only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the head where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a