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It was a overcast Monday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sudden pain erupted behind my right eye. Then came quick stabs, reminiscent of electric shocks. As the school day came and went, the pain subsided and then came back with greater force. Four times that day I left a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I took aspirin, but the pain remained unbearable.

The headaches returned frequently that fall, and once more in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the morning, early pangs on the train, full-on agony in class by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense pain behind a single eye that lasts for several hours.

About 1 in 1000 individuals suffer by the condition, and males are more frequently diagnosed. Attacks usually begin with abrupt, severe agony around a single eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic bouts; some patients have chronic attacks, characterized by the lack of long pain-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to many triggers, made things worse. After having sherry 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. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the failure to plan life around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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

Historical healing records propose bizarre remedies for what modern observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the first detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at specific hours”.

The disorder were only officially classified by international headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the brain. Prominent experts in treating the condition note this.

In the late 1990s, scientists released the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, published in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosis and managing occur because patients are seldom 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 history is crucial: on which side do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But many first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She believes dentists still need greater awareness. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the episode eased.

Official guidelines on treatment recommend that patients are offered high-dose oxygen and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly helps manage the bouts of well-known individuals.

But consultant neurologists believe the official guidelines need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Short bouts with infrequent episodes are managed with abortive therapy only. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a