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It began on a gloomy weekday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a sudden pain sprang behind my right eye. This was followed by quick jolts, similar to lightning bolts. As each class came and went, the pain eased and then returned with greater force. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and again in spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-on pain in the classroom by 9.30am. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with intense pain around a single eye that persists for three hours.

Approximately 1 in 1000 individuals suffer by the condition, and men are more often affected. Cluster headaches typically start with abrupt, severe agony around a single eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, every day 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; some patients have continuous attacks, characterized by the lack of extended pain-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster patients reported suicidal thoughts amid bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started 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 condition deteriorated through her youth. Alcohol in her adolescence, similar to many triggers, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her family often mistook her episodes as drunken episodes. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Still, the inability to plan daily activities around unpredictable pain took its effect. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple 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 history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the disease to an evil entity who attacked his sufferers' heads.

Historical medical records propose unusual remedies for what some observers would describe as a migraine. In the middle ages, migraine was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

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

The disorder were only officially recognised by international medical societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the brain. Prominent experts in diagnosing the condition note this.

In the late 1990s, researchers released the findings of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The results, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such progress, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in agony,” a doctor says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first go to A&E or are given unsuitable treatments.

A charity trustee, 78, has experienced the condition 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 teeth extracted because dental professionals misinterpreted her pain. She thinks dentists still need much more education. 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 episode passed.

Official guidance on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But consultant specialists argue the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout determines the approach.” Short bouts with infrequent attacks are managed with acute treatment only. Longer or more intense periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a