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It began on a dreary Monday morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense pain bloomed behind my one eye. Then came rapid stabs, like electric shocks. As each class progressed, the pain subsided and then came back with greater intensity. Multiple times that day I left a colleague with activities and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The attacks returned repeatedly that fall, and once more in the spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-blown agony in the classroom by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense discomfort around a single eye that lasts for several hours.

About 1 in 1000 people are affected by the condition, and males are more often affected. Attacks typically start with sudden, 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, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in periodic cycles; some patients have continuous attacks, defined by the lack of long pain-free periods.

What unites sufferers is the intensity. One research paper rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster headache patients reported suicidal thoughts during bouts; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to many triggers, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the failure to plan life around erratic attacks took its effect. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple 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 facility.

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Headaches have been described across history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the disease to an evil entity who attacked his sufferers' heads.

Ancient medical records propose unusual remedies for what some observers would describe as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with treatments including bloodletting to other, more folk remedies.

It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.

The disorder were only formally classified by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery which supplies blood to the head. Leading specialists in treating the condition explain this.

In the late 1990s, scientists released the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, featured in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosis and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other primary head pain disorders, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given inadequate therapies.

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 extracted because dentists misinterpreted her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in 2021; a reassuring volunteer talked them through oxygen therapy and medication until the attack eased.

Official guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But leading neurologists believe the guidance need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the bout determines the approach.” Brief bouts with infrequent attacks are managed with abortive treatment only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that reduces nerve activity.

The national guidance need updating to reflect a