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It began on a overcast Monday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a sudden sensation erupted behind my one eye. It was followed by rapid shocks, like electric shocks. As the school day came and went, the pain subsided and then came back with greater intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and once more in spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-blown agony in class by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with intense pain behind a single eye that persists up to three hours.

Approximately one in 1,000 people are affected by the disorder, and males are more frequently affected. Attacks usually begin with abrupt, excruciating agony focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the number dropped to 4% when they were pain-free.

One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, similar to many triggers, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Still, the failure to plan life around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Historical healing texts suggest bizarre remedies for what modern observers would describe as a migraine. In the medieval times, migraine was identified as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.

The disorder were only officially classified by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the head. Prominent specialists in diagnosing the condition explain this.

In 1998, scientists released the results of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The results, published 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.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other primary head pain disorders, such as migraine, before confirming cluster headaches. A detailed history is essential: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But many first go to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from the condition 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 dental professionals misunderstood her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer talked me through oxygen therapy and medication until the attack passed.

National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly helps manage the attacks of well-known individuals.

But consultant specialists argue the guidance need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the bout determines the approach.” Brief bouts with infrequent episodes are managed with abortive treatment only. Longer 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 injection into the area of the skull where the discomfort is that decreases nerve activity.

The national guidance need revising to reflect a