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It was a overcast weekday morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense pain bloomed behind my right eye. This was followed by quick stabs, similar to lightning bolts. As the school day progressed, the pain eased and then returned with increased force. Four times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unbearable.

The attacks returned repeatedly that fall, and once more in the spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-blown pain in class by 9.30am. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition often begin with intense pain behind one eye that persists for three hours.

Approximately one in 1,000 people suffer by the condition, and men are more frequently diagnosed. Cluster headaches usually begin with abrupt, severe agony 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 accompanied by tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in periodic bouts; some patients have continuous attacks, characterized by the lack of extended pain-free periods.

What unites patients is the severity. One study rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to many triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Still, the failure to plan life around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Historical medical texts propose unusual remedies for what modern experts would describe as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a European physician who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.

The disorder were only formally classified by international headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the head. Prominent experts in diagnosing the condition note this.

In 1998, researchers released the results of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other primary headache disorders, such as migraine, before confirming the disorder. A detailed patient history is essential: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring advisor talked them through oxygen treatment and medication until the attack passed.

Official guidelines on management recommend that patients are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But leading neurologists believe the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Brief cycles with infrequent attacks are managed with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a