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It began on a overcast weekday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a intense pain bloomed behind my one eye. This was followed by rapid jolts, similar to lightning bolts. As each class came and went, the pain subsided and then came back with greater force. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and once more in the spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-on agony in the classroom by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with severe discomfort behind a single eye that persists up to several hours.

Approximately 1 in 1000 people suffer by the disorder, and men are more often affected. Attacks typically begin with abrupt, excruciating agony focused on one eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in seasonal cycles; some patients have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to several triggers, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the inability to organize daily activities around unpredictable pain took its effect. 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 incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described across history. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the disease to an evil entity who attacked his sufferers' heads.

Ancient healing texts suggest bizarre remedies for what modern experts would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with treatments including bloodletting to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.

The disorder were only formally recognised by international medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the brain. Leading specialists in treating the condition explain this.

In the late 1990s, researchers published the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a major journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in recently, after a doctor researched his complaints.

Specialists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other common head pain disorders, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from 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 molars pulled because dental professionals 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 support line during an attack in early 2021; a calm advisor guided them through oxygen treatment and medication until the attack passed.

Official guidelines on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of some people.

But consultant specialists argue the guidance need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the cycle dictates the treatment.” Brief bouts with occasional episodes are managed with acute treatment alone. Longer or more severe bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a