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It was a gloomy Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sharp sensation erupted behind my one eye. It was followed by rapid jolts, like lightning bolts. As each class came and went, the discomfort eased and then returned with greater force. Four times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and again in the spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the morning, early pangs on the train, full-on agony in the classroom by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.

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

Approximately one in 1,000 people are affected by the condition, and men are more often affected. Cluster headaches usually begin with sudden, excruciating agony around a single eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in periodic bouts; some patients have chronic attacks, characterized by the absence of long symptom-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another found 64% of cluster headache patients reported thoughts of self-harm amid bouts; the number fell to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to several triggers, made things worse. After having alcohol at her school leaving party, she recalls hardly 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 husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to organize life around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Historical healing texts propose unusual remedies for what some observers would describe as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.

The disorder were only formally recognised by international headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the brain. Leading experts in treating the disorder note this.

In the late 1990s, scientists published the findings of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, published in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four operations before finally being correctly identified in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 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 pulled because dentists misunderstood her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in 2021; a calm volunteer guided them through oxygen treatment and drugs until the episode eased.

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

But consultant neurologists believe the official guidelines need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Brief bouts with infrequent episodes are managed with abortive treatment alone. Longer or more intense bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a