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It was a overcast Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a intense sensation sprang behind my right eye. Then came rapid jolts, reminiscent of electric shocks. As the school day progressed, the discomfort subsided and then returned with greater intensity. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and once more in spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with severe pain around a single eye that persists up to several hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more frequently affected. Attacks usually start with abrupt, excruciating agony focused on one eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in periodic cycles; others have chronic cluster headaches, characterized by the absence of long pain-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 10, more severe than broken bones or other conditions. Another discovered 64% of cluster headache patients experienced suicidal thoughts during bouts; the figure fell to 4% when they were not in pain.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to several causes, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Still, the failure to organize daily activities around unpredictable 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 incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the ailment to an evil spirit who afflicted his victims' heads.

Ancient medical records propose bizarre treatments for what modern observers would describe as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with treatments including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing daily at specific hours”.

Cluster headaches were only formally recognised by global headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the head. Leading experts in treating the condition explain this.

In 1998, scientists published the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being diagnosed in recently, after a physician looked up his symptoms.

Specialists say wait times 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 eliminating other primary head pain conditions, such as migraine, before confirming the disorder. A thorough patient history is essential: on which part of the head do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

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 attack since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her symptoms. She believes the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor talked me through oxygen treatment and drugs until the episode eased.

National guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of some people.

But consultant specialists believe the guidance need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle dictates the approach.” Short cycles with occasional attacks are managed with acute treatment only. Longer or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that reduces nerve activity.

The official guidelines need updating to reflect a