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It was a overcast Monday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sharp sensation erupted behind my right eye. Then came rapid stabs, reminiscent of electric shocks. As the school day progressed, the pain eased and then came back with increased intensity. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cool water. I took aspirin, but the pain remained unbearable.

The headaches returned repeatedly that fall, and once more in the spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the morning, early twinges on the train, full-on pain in class by mid-morning. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with intense pain around a single eye that persists up to three hours.

Approximately 1 in 1000 individuals are affected by the condition, and men are more frequently diagnosed. Cluster headaches usually start with abrupt, severe pain around a single eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in periodic cycles; some patients have continuous attacks, defined by the lack of extended pain-free periods.

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

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like several triggers, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan daily activities around erratic attacks took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the small freedoms 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 facility.

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Headaches have been described across the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient medical texts propose unusual treatments for what some observers would classify as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with therapies ranging from herbal concoctions to other, more folk cures.

It was a European doctor who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.

Cluster headaches were only formally classified by global medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the brain. Prominent specialists in diagnosing the condition explain this.

In 1998, scientists released the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains slow. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four operations before eventually being correctly identified in recently, after a physician looked up his complaints.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other common headache conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from 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 education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a calm advisor guided me through oxygen treatment and medication until the attack eased.

Official guidance on treatment advise that patients are offered high-dose oxygen and/or a specific medication administered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But leading specialists believe the guidance need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Brief bouts with occasional attacks are managed with abortive therapy alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the discomfort is that reduces nerve activity.

The national guidance need revising to reflect a