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It was a dreary weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden sensation sprang behind my right eye. It was followed by quick stabs, reminiscent of electric shocks. As the school day progressed, the pain subsided and then came back with greater force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks appeared repeatedly that autumn, and again in the spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the shower, early pangs on the train, full-on pain in the classroom by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with intense discomfort around one eye that persists up to several hours.

Approximately one in 1,000 people suffer by the disorder, and males are more often diagnosed. Attacks typically start with sudden, excruciating pain around a single eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which arrives in periodic cycles; others have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What connects sufferers is the severity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate found 64% of cluster patients reported suicidal thoughts amid bouts; the figure fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to many triggers, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to organize 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 cared for by her children 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 significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the ailment to an malevolent entity who afflicted his victims' heads.

Ancient medical texts suggest bizarre remedies for what some experts would classify as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with therapies including bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially classified by international headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the head. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, researchers released the findings of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, featured in a major 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 felt better.

Despite such advances, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes dentists still need greater awareness. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an attack in 2021; a reassuring advisor talked me through oxygen therapy and medication until the attack passed.

National guidelines on management advise that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of well-known people.

But consultant neurologists argue the official guidelines need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle dictates the approach.” Brief bouts with infrequent episodes are managed with acute treatment alone. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a