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It began on a gloomy weekday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp pain erupted behind my one eye. It was followed by rapid jolts, like lightning bolts. As the school day progressed, the discomfort subsided and then came back with greater force. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I took aspirin, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and once more in the spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-on agony in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with severe discomfort behind one eye that lasts for three hours.

About one in 1,000 people suffer by the disorder, and males are more frequently diagnosed. Cluster headaches typically begin with abrupt, excruciating pain around a single eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, daily or multiple 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 bouts; others have chronic cluster headaches, defined by the lack of extended symptom-free periods.

What connects patients is the severity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate found 64% of cluster patients reported thoughts of self-harm amid bouts; the figure dropped to 4% when they were not in pain.

One patient, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and bang 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 worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.

Nevertheless, the inability to organize daily activities around unpredictable attacks took its effect. She especially hated being unable to plan outings, being seen as flaky 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 small liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the ailment to an malevolent entity who attacked his victims' heads.

Historical healing records suggest bizarre remedies for what modern observers would describe as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with treatments including bloodletting to other, more folk cures.

It was a European doctor who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

Cluster headaches were only officially recognised by international 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 that supplies blood to the brain. Prominent specialists in treating the disorder note this.

In 1998, scientists published the results of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, featured in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in 2014, after a doctor researched his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other primary headache conditions, such as tension-type headache, 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 alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given unsuitable treatments.

A charity trustee, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals 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. I remember calling a support line during an attack in early 2021; a reassuring advisor guided them through oxygen treatment and medication until the attack eased.

Official guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of well-known individuals.

But consultant neurologists argue the guidance need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Short cycles with occasional episodes are managed with abortive treatment only. Longer or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that decreases nerve activity.

The national guidelines need updating to reflect a