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It began on a overcast weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation sprang behind my one eye. This was followed by rapid stabs, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then came back with increased force. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The attacks returned frequently that autumn, and again 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 commute, full-blown pain in class by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with severe discomfort behind a single eye that lasts for several hours.

About 1 in 1000 individuals suffer by the disorder, and men are more often affected. Attacks typically begin with abrupt, severe agony focused on one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in periodic cycles; some patients have chronic cluster headaches, defined by the lack of long symptom-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 10, higher than broken bones or pancreatitis. Another found 64% of cluster patients reported thoughts of self-harm during bouts; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

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

Still, the failure to organize life around unpredictable pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the disease to an evil spirit who afflicted his victims' heads.

Ancient healing records suggest bizarre remedies for what some experts would describe as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by international medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel which delivers blood to the head. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, researchers published the results of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other primary head pain disorders, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which side 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 referred to dedicated clinics. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the attack eased.

National guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But leading specialists argue the guidance need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Short bouts with occasional episodes are handled with abortive treatment only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that decreases nerve activity.

The national guidance need revising to reflect a