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It was a overcast weekday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sudden sensation bloomed behind my right eye. This was followed by rapid jolts, like lightning bolts. As the school day came and went, the pain eased and then returned with greater intensity. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The attacks appeared frequently that autumn, and again in spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could predict the pattern: aura in the morning, early pangs on the train, full-on pain in class by 9.30am. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with severe discomfort behind a single eye that lasts for three hours.

About one in 1,000 individuals suffer by the condition, and men are more frequently diagnosed. Cluster headaches typically begin with abrupt, excruciating agony focused on one eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in periodic bouts; some patients have chronic cluster headaches, characterized by the absence of long pain-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like many causes, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated behavior. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national hospital.

Nevertheless, the failure to organize life around erratic attacks took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across history. “The first description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the disease to an evil spirit who attacked his victims' heads.

Ancient healing records suggest bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.

The disorder were only officially recognised by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the head. Prominent experts in treating the disorder explain this.

In the late 1990s, researchers published the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being diagnosed in 2014, after a physician looked up his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by ruling out other primary headache disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She thinks dentists still need much more awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in 2021; a reassuring volunteer talked them through oxygen treatment and medication until the attack eased.

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

But consultant specialists argue the guidance need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout dictates the approach.” Short cycles with infrequent episodes are handled with abortive treatment only. Longer or more intense bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve signals.

The national guidance need revising to reflect a