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It was a overcast weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden sensation sprang behind my right eye. This was followed by rapid jolts, similar to lightning bolts. As the school day came and went, the pain eased and then came back with greater intensity. Multiple 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 ibuprofen, but the pain remained unrelenting.

The headaches returned repeatedly that fall, and once more in the spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-on pain in class by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with severe discomfort around a single eye that lasts up to several hours.

Approximately one in 1,000 people suffer by the condition, and men are more frequently diagnosed. Attacks typically start with abrupt, excruciating pain focused on a single eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in seasonal cycles; some patients have chronic cluster headaches, defined by the absence of long symptom-free periods.

What unites patients is the severity. One study scored the pain at 9.7 10, more severe than broken bones or other conditions. Another found 64% of cluster patients reported thoughts of self-harm during attacks; the figure fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to many causes, 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 behavior. Support finally came from her father 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 illness. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.

Still, the failure to organize daily activities around erratic pain took its effect. She particularly 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 recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.

Historical healing records propose unusual remedies for what modern observers would describe as a migraine. In the middle ages, migraine was recognised as a distinct condition, with treatments ranging from bloodletting to other, more folk cures.

It was a Dutch doctor who provided the first detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at specific hours”.

Cluster headaches were only officially recognised by international headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the head. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, researchers published the results of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other common head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose 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 therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was she who replied. I remember calling a support line during an bout in early 2021; a reassuring advisor guided me through oxygen treatment and drugs until the attack eased.

Official guidelines on management advise that patients are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the bouts of some individuals.

But consultant specialists believe the guidance need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Brief cycles with infrequent attacks are managed with abortive treatment only. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a