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It was a gloomy Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp pain sprang behind my right eye. Then came quick stabs, reminiscent of lightning bolts. As each class came and went, the discomfort subsided and then returned with greater force. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the pain remained unrelenting.

The headaches returned frequently that autumn, and again in the spring, soon establishing an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the train, full-blown agony in class by mid-morning. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.

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

About one in 1,000 individuals suffer by the condition, and males are more frequently diagnosed. Attacks typically begin with sudden, excruciating agony focused on a single eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in seasonal cycles; others have continuous attacks, defined by the absence of long symptom-free periods.

What unites sufferers is the intensity. One study rated the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the figure dropped to 4% when they were not in pain.

One patient, 74, a long-term patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to several causes, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her episodes as drunken episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Still, the failure to plan daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value 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 documented across history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Historical medical records propose unusual treatments for what modern observers would classify as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with therapies ranging from bloodletting to other, more superstitious remedies.

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

The disorder were only officially recognised by international headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the head. Leading specialists in treating the disorder explain this.

In the late 1990s, researchers released the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” one says. He proceeds by ruling out other primary head pain disorders, such as migraine, before confirming the disorder. A thorough history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an bout in early 2021; a calm volunteer talked them through oxygen therapy and drugs until the attack passed.

National guidance on management advise that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently soothes the attacks of well-known people.

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 duration of the bout determines the approach.” Brief cycles with infrequent episodes are managed with acute therapy alone. Longer or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that decreases nerve activity.

The national guidance need updating to reflect a