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It was a dreary Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a intense sensation sprang behind my one eye. It was followed by quick shocks, similar to electric shocks. As each class came and went, the discomfort subsided and then came back with increased intensity. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I tried aspirin, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and once more in the spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the morning, early twinges on the commute, full-on agony in the classroom by 9.30am. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with severe pain behind one eye that lasts up to three hours.

About one in 1,000 people suffer by the disorder, and males are more often diagnosed. Attacks usually start with abrupt, severe agony around a single eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in periodic bouts; some patients have chronic attacks, defined by the absence of long pain-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 10, more severe than broken bones or pancreatitis. Another found a significant percentage of cluster patients experienced suicidal thoughts during bouts; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to many causes, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.

Still, the inability to plan life around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout history. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an malevolent entity who attacked his victims' heads.

Ancient medical texts suggest unusual remedies for what modern experts would describe as a migraine. In the middle ages, migraine was identified as a separate condition, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the brain. Leading experts in diagnosing the disorder explain this.

In 1998, researchers published the results of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by ruling out other common headache conditions, such as migraine, before confirming the disorder. A thorough history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more education. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an attack in 2021; a calm advisor guided me through oxygen treatment and medication until the attack passed.

Official guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of some people.

But leading specialists believe the guidance need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Short bouts with occasional episodes are managed with acute treatment only. Longer or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. Many 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 signals.

The official guidelines need revising to reflect a