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It was a gloomy weekday morning in September 2016. I was working as a educator, trying to settle a new class, when a intense sensation erupted behind my one eye. This was followed by quick shocks, reminiscent of electric shocks. As each class came and went, the discomfort eased and then returned with greater force. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and once more in the spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could predict the pattern: aura in the morning, early pangs on the train, full-on agony in class by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with severe pain around a single eye that lasts for several hours.

About 1 in 1000 individuals suffer by the condition, and men are more often affected. Attacks typically begin with sudden, severe pain focused on a single eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in periodic bouts; others have continuous cluster headaches, defined by the lack of long symptom-free periods.

What connects patients is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients reported suicidal thoughts amid bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to many causes, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her attacks as drunken behavior. Understanding finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the inability to organize life around unpredictable attacks took its toll. She particularly disliked 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 most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning 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 account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Historical healing records propose bizarre treatments for what modern experts would describe as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with therapies including herbal concoctions to other, more folk remedies.

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

The disorder were only officially classified by global headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the brain. Prominent experts in diagnosing the condition note this.

In the late 1990s, scientists published the results of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before finally being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which part of the head do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first arrive to A&E or are given unsuitable treatments.

A charity trustee, 78, has experienced 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 teeth pulled because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in early 2021; a calm volunteer guided them through oxygen treatment and medication until the attack passed.

Official guidance on management advise that sufferers are offered high-dose oxygen and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly soothes the bouts of well-known individuals.

But consultant specialists believe the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout dictates the approach.” Short bouts with occasional attacks are managed with acute therapy only. Longer or more severe periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that decreases nerve signals.

The official guidelines need updating to reflect a