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It was a gloomy Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a intense pain bloomed behind my one eye. Then came quick stabs, like electric shocks. As each class progressed, the pain subsided and then came back with increased intensity. Four times that day I left a colleague with activities and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and once more in spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the train, full-blown pain in class by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense discomfort around a single eye that persists for several hours.

About 1 in 1000 people are affected by the condition, and males are more often affected. Attacks usually begin with sudden, excruciating pain around one eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in seasonal bouts; others have chronic cluster headaches, defined by the absence of extended symptom-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered 64% of cluster patients reported suicidal thoughts during bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to several triggers, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her family often interpreted her attacks as drunken episodes. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to organize life around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation 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 winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described across the ages. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the disease to an evil spirit who attacked his victims' heads.

Historical medical texts propose unusual treatments for what modern observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with therapies ranging from bloodletting to other, more superstitious cures.

It was a European doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.

Cluster headaches were only formally classified by international headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the head. Leading experts in diagnosing the condition explain this.

In the late 1990s, scientists published the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, identification remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before eventually being diagnosed in recently, after a physician looked up his complaints.

Specialists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, 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 dentists misinterpreted her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a calm volunteer talked them through oxygen treatment and medication until the attack eased.

National guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly soothes the bouts of some people.

But leading neurologists believe the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout determines the treatment.” Brief bouts with infrequent episodes are handled with acute therapy only. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a