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It began on a overcast Monday morning in September 2016. I worked as a educator, trying to settle a new class, when a intense sensation sprang behind my right eye. It was followed by quick stabs, similar to lightning bolts. As the school day progressed, the discomfort subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I took paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and again in the spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the shower, early pangs on the commute, full-on pain in the classroom by mid-morning. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe discomfort around one eye that lasts up to several hours.

Approximately one in 1,000 people suffer by the disorder, and men are more frequently affected. Attacks typically begin with abrupt, excruciating pain focused on one eye that peaks within minutes and lasts for as long as 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 an episodic type, which arrives in periodic cycles; others have chronic cluster headaches, defined by the absence of extended pain-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, similar to several triggers, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Support eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan daily activities around erratic 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 paralysis 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 episode inside a facility.

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Headaches have been documented across the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the disease to an evil spirit who attacked his sufferers' heads.

Ancient healing texts suggest unusual remedies for what modern observers would describe as a migraine. In the middle ages, migraine was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only formally recognised by international headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the head. Prominent specialists in treating 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 data, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other primary headache disorders, such as migraine, before confirming cluster headaches. A thorough history is essential: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult 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 misinterpreted her symptoms. She thinks dentists still need greater education. When another patient sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the episode passed.

National guidance on management recommend that patients are offered high-flow oxygen therapy and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of well-known individuals.

But leading specialists argue the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout dictates the treatment.” Short cycles with occasional attacks are managed with acute treatment alone. Longer or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a