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It began on a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a intense sensation bloomed behind my right eye. It was followed by rapid stabs, reminiscent of lightning bolts. As the school day progressed, the pain eased and then came back with increased force. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cool water. I tried aspirin, but the pain remained unbearable.

The attacks returned repeatedly that autumn, and once more in spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-blown pain in the classroom by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with severe discomfort around a single eye that lasts up to three hours.

About one in 1,000 people suffer by the condition, and men are more often affected. Attacks typically begin with sudden, severe pain focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in seasonal bouts; others have continuous cluster headaches, characterized by the absence of long pain-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found a significant percentage of cluster patients reported suicidal thoughts amid attacks; the figure fell to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, similar to many triggers, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated behavior. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan life around unpredictable attacks 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 paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The first description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil entity who attacked his victims' heads.

Ancient healing texts suggest unusual treatments for what some experts would classify as a headache disorder. In the medieval times, severe headache was identified as a separate disorder, with treatments including bloodletting to other, more superstitious cures.

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

Cluster headaches were only officially classified by international headache societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the head. Leading specialists in treating the condition note this.

In the late 1990s, researchers published the results of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, published in a major journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four operations before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in 2021; a calm advisor guided me through oxygen treatment and drugs until the attack eased.

Official guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But leading specialists argue the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout dictates the treatment.” Short bouts with occasional attacks are handled with acute therapy only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a