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It was a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a intense pain bloomed behind my right eye. It was followed by quick stabs, like lightning bolts. As each class came and went, the discomfort eased and then came back with increased intensity. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I took aspirin, but the agony remained unrelenting.

The attacks appeared frequently that fall, and once more in spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the morning, early pangs on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with intense discomfort behind a single eye that lasts for three hours.

About one in 1,000 people suffer by the condition, and males are more frequently affected. Cluster headaches typically start with sudden, severe agony around a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in periodic cycles; others have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

What connects sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster patients reported suicidal thoughts during bouts; the figure fell to four percent when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to several triggers, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Still, the failure to organize daily activities around unpredictable attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs 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 episode inside a portable toilet.

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Headaches have been documented across history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They attributed the disease to an evil entity who attacked his sufferers' heads.

Ancient medical texts suggest bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a European physician who provided the first detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing each day at specific hours”.

Cluster headaches were only formally classified by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the head. Prominent experts in diagnosing the condition explain this.

In the late 1990s, scientists published the findings of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains delayed. 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 surgeries before finally being correctly identified in recently, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in 2021; a reassuring advisor talked them through oxygen treatment and medication until the episode passed.

National guidance on management recommend that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But consultant neurologists believe the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Short bouts with infrequent episodes are managed with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the head where the pain is that decreases nerve activity.

The national guidelines need revising to reflect a