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It was a overcast weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation bloomed behind my right eye. It was followed by rapid shocks, like lightning bolts. As the school day came and went, the discomfort subsided and then returned with increased force. Four times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unbearable.

The headaches returned frequently that autumn, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

This condition typically start with intense pain behind one eye that persists for several hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more frequently diagnosed. Cluster headaches usually begin with sudden, excruciating pain around one eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in seasonal cycles; some patients have continuous cluster headaches, characterized by the absence of long pain-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster patients reported suicidal thoughts during attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. 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 her youth. Drinking in her teens, like several causes, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her episodes as drunken behavior. Support eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize life around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the small liberties 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 facility.

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Headaches have been described throughout history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

Ancient medical records suggest bizarre treatments for what modern experts would classify as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with treatments ranging from bloodletting to other, more folk remedies.

It was a European physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by global headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In 1998, researchers published the findings of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being diagnosed in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: 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 redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has suffered from the condition for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a calm volunteer talked me through oxygen treatment and medication until the episode passed.

Official guidance on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of some individuals.

But leading specialists believe the official guidelines need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the bout determines the treatment.” Brief cycles with occasional attacks are managed with acute therapy alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a