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It began on a overcast Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation erupted behind my right eye. It was followed by quick shocks, reminiscent of electric shocks. As the school day progressed, the pain eased and then came back with greater force. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and again in the spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-on pain in the classroom by mid-morning. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with severe pain behind a single eye that persists up to three hours.

About one in 1,000 individuals suffer by the condition, and males are more frequently affected. Attacks typically begin with abrupt, excruciating pain around one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in periodic bouts; some patients have chronic attacks, defined by the lack of long pain-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients reported thoughts of self-harm during attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like many triggers, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated episodes. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Still, the inability to plan daily activities around erratic pain took its toll. 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 worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the ailment to an evil spirit who afflicted his victims' heads.

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

It was a European doctor who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache occurring and disappearing daily at fixed hours”.

The disorder were only formally recognised by international headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the head. Leading experts in treating the condition explain this.

In 1998, scientists released the findings of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: 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, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She thinks the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an bout in 2021; a calm advisor talked me through oxygen treatment and drugs until the episode eased.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known individuals.

But consultant specialists argue the guidance need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Brief bouts with occasional episodes are handled with abortive therapy alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that reduces nerve activity.

The official guidelines need updating to reflect a