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It began on a gloomy Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sudden sensation sprang behind my right eye. It was followed by quick shocks, reminiscent of lightning bolts. As each class progressed, the pain eased and then returned with increased force. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.

The headaches returned repeatedly that fall, and again in the spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the train, full-blown agony in the classroom by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with intense discomfort behind one eye that lasts for several hours.

Approximately 1 in 1000 people suffer by the disorder, and males are more often affected. Attacks usually begin with sudden, excruciating agony around a single eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in periodic bouts; others have chronic attacks, characterized by the lack of extended symptom-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the number fell to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Wales, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, like several triggers, made things worse. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated behavior. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the inability to organize life around erratic attacks took its toll. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Historical healing records suggest unusual remedies for what modern observers would describe as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with therapies ranging from bloodletting to other, more folk cures.

It was a European doctor who provided the initial detailed description 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 fixed hours”.

The disorder were only officially classified by international medical societies in 1988. 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 head. Leading experts in diagnosing the condition note this.

In the late 1990s, scientists released the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He works by eliminating other common headache conditions, such as migraine, before confirming the disorder. A detailed patient history is essential: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She believes dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in 2021; a calm volunteer talked them through oxygen treatment and drugs until the episode passed.

National guidelines on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly soothes the bouts of some people.

But leading neurologists believe the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Brief cycles with occasional attacks are handled with abortive therapy only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that decreases nerve signals.

The national guidelines need revising to reflect a