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It was a dreary Monday morning in September 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 stabs, similar to electric shocks. As the school day came and went, the pain subsided and then came back with greater intensity. Four times that day I left a colleague with activities and ran to the school bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and once more in the spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe pain around a single eye that persists up to three hours.

About one in 1,000 individuals are affected by the disorder, and males are more frequently affected. Attacks usually begin with sudden, severe pain focused on a single eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in periodic cycles; others have continuous attacks, characterized by the absence of extended symptom-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 10, higher than broken bones or other conditions. A separate discovered 64% of cluster patients reported thoughts of self-harm amid attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like several triggers, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.

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

Nevertheless, the inability to organize life around unpredictable pain took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major 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 subject. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Ancient healing texts propose bizarre treatments for what some observers would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with treatments including bloodletting to other, more superstitious cures.

It was a European physician who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.

Cluster headaches were only formally classified by global headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Prominent specialists in treating the disorder note this.

In 1998, researchers released the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a major medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such advances, identification remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four surgeries before finally being diagnosed in recently, after a physician researched his symptoms.

Specialists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in early 2021; a calm volunteer talked them through oxygen treatment and drugs until the attack passed.

Official guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of well-known people.

But leading specialists believe the official guidelines need updating to reflect a clearer treatment pathway 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 attacks are handled with acute treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that decreases nerve activity.

The national guidelines need updating to reflect a