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It began on a dreary weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a intense sensation bloomed behind my right eye. It was followed by rapid jolts, like electric shocks. As each class came and went, the pain subsided and then returned with increased force. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The headaches returned frequently that fall, and once more in spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the train, full-on agony in the classroom by 9.30am. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with intense discomfort around one eye that persists up to three hours.

About one in 1,000 individuals are affected by the disorder, and males are more often diagnosed. Attacks typically begin with abrupt, severe pain around one eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in periodic cycles; others have chronic cluster headaches, defined by the lack of extended pain-free periods.

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

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like many triggers, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Support eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the ailment to an evil entity who attacked his victims' heads.

Historical medical texts suggest unusual remedies for what modern experts would classify as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with therapies including herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the initial detailed account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and vanishing each day at specific hours”.

The disorder were only officially recognised by international medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the brain. Prominent experts in treating the condition explain this.

In 1998, researchers published the results of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other primary head pain disorders, such as migraine, before confirming cluster headaches. A thorough 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? Certain features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given unsuitable therapies.

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 episode since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She believes dentists still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a calm volunteer talked them through oxygen treatment and medication until the episode eased.

National guidelines on management advise that patients are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly soothes the attacks of some people.

But leading neurologists believe the guidance need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout determines the approach.” Short bouts with infrequent attacks are managed with abortive therapy only. Longer or more intense periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a