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It began on a overcast weekday morning in September 2016. I worked as a teacher, trying to settle a new class, when a intense sensation sprang behind my right eye. It was followed by quick jolts, reminiscent of electric shocks. As the school day came and went, the discomfort eased and then came back with greater force. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and once more in spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-on agony in class by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense pain behind a single eye that persists for three hours.

About 1 in 1000 individuals suffer by the condition, and males are more often affected. Cluster headaches usually start with abrupt, severe pain around one eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in seasonal cycles; others have continuous attacks, characterized by the absence of extended pain-free periods.

What connects patients is the severity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like many causes, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Understanding finally came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to organize daily activities around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the ailment to an malevolent entity who attacked his victims' heads.

Ancient healing texts propose bizarre remedies for what modern experts would describe as a migraine. In the medieval times, migraine was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more folk cures.

It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only formally classified by global headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the brain. Prominent specialists in diagnosing the disorder note this.

In 1998, scientists published the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four operations before eventually being diagnosed in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by eliminating other primary headache disorders, such as migraine, before confirming the disorder. A detailed patient history is essential: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a calm volunteer guided them through oxygen therapy and medication until the attack passed.

Official guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the attacks of well-known people.

But leading neurologists believe the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle dictates the approach.” Brief cycles with infrequent episodes are handled with abortive treatment alone. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve activity.

The national guidelines need updating to reflect a