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It began on a gloomy Monday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp pain bloomed behind my one eye. It was followed by rapid shocks, reminiscent of lightning bolts. As the school day progressed, the discomfort eased and then came back with increased force. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The attacks returned frequently that autumn, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-blown agony in the classroom by mid-morning. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with severe discomfort behind a single eye that lasts up to several hours.

About one in 1,000 individuals suffer by the disorder, and men are more often affected. Attacks usually start with abrupt, excruciating agony focused on one eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in periodic bouts; some patients have chronic attacks, characterized by the absence of long pain-free periods.

What unites patients is the severity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm amid attacks; the number fell to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, like many causes, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was fired from one job, in part due to time off during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Still, the failure to organize daily activities around unpredictable pain took its effect. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation 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 significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the disease to an malevolent entity who attacked his victims' heads.

Ancient healing records propose bizarre treatments for what modern observers would describe as a headache disorder. In the medieval times, migraine was identified as a separate condition, with therapies ranging from herbal concoctions to other, more folk cures.

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

The disorder were only officially recognised by international headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the head. Leading experts in treating the condition note this.

In the late 1990s, scientists published the findings of a study for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such advances, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four operations before eventually being diagnosed in recently, after a physician looked up his complaints.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a calm advisor talked them through oxygen treatment and medication until the attack passed.

Official guidance on treatment recommend that patients are offered high-dose oxygen and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of well-known individuals.

But consultant specialists argue the guidance need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Brief bouts with infrequent episodes are handled with abortive treatment alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that reduces nerve activity.

The national guidance need updating to reflect a