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It was a dreary weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a intense sensation bloomed behind my one eye. This was followed by rapid stabs, like electric shocks. As each class progressed, the pain subsided and then returned with greater force. Four times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The attacks returned repeatedly that autumn, and again in the spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could predict the routine: aura in the shower, early pangs on the train, full-blown agony in class by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe pain around a single eye that lasts for three hours.

Approximately one in 1,000 people are affected by the condition, and men are more frequently affected. Cluster headaches usually start with abrupt, severe pain around one eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in periodic cycles; others have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What unites patients is the severity. One study scored the sensation at 9.7 10, higher than broken bones or other conditions. A separate discovered 64% of cluster patients experienced thoughts of self-harm amid attacks; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to several triggers, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken episodes. Understanding 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 found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan life around unpredictable attacks 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 looked after by her children 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 remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Historical medical texts propose unusual remedies for what some experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with therapies including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his writings, he describes 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 the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Leading specialists in diagnosing the disorder note this.

In 1998, scientists published the findings of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, featured in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before finally being correctly identified in 2014, after a physician researched his complaints.

Specialists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first go to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a calm advisor guided me through oxygen treatment and drugs until the attack passed.

National guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the bouts of some people.

But leading specialists argue the guidance need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Brief cycles with infrequent episodes are managed with acute therapy alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that reduces nerve activity.

The official guidance need revising to reflect a