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It was a gloomy weekday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense sensation sprang behind my one eye. Then came rapid jolts, similar to electric shocks. As the school day progressed, the pain eased and then came back with greater force. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and again in the spring, soon forming an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-blown 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.

This condition often start with severe discomfort behind a single eye that lasts up to several hours.

Approximately one in 1,000 people are affected by the disorder, and males are more often diagnosed. Attacks typically start with sudden, excruciating agony around one eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in periodic bouts; some patients have chronic attacks, characterized by the absence of long pain-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate found 64% of cluster patients experienced suicidal thoughts during bouts; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks started 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 condition worsened through childhood. Alcohol in her adolescence, similar to many causes, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated behavior. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Still, the inability to plan life around unpredictable attacks took its effect. She especially disliked being unable to plan outings, being seen as unreliable 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 value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Historical medical records propose bizarre treatments for what some experts would describe as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with treatments including bloodletting to other, more superstitious cures.

It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.

The disorder were only formally classified by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Leading specialists in diagnosing the condition explain this.

In the late 1990s, scientists released the results of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The data, featured in a major medical publication, showed increased activity 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 delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being diagnosed in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain conditions, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which part of the head do signs occur? For how long? What season? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a reassuring volunteer talked me through oxygen therapy and medication until the attack eased.

Official guidelines on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of some people.

But leading specialists believe the guidance need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Short bouts with infrequent episodes are managed with acute treatment only. Longer or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a