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It began on a dreary weekday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sudden sensation sprang behind my right eye. It was followed by rapid stabs, like lightning bolts. As the school day came and went, the discomfort subsided and then returned with greater intensity. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The attacks returned frequently that autumn, and once more in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-on agony in the classroom by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

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

Approximately 1 in 1000 individuals suffer by the condition, and men are more frequently affected. Cluster headaches usually begin with abrupt, excruciating agony around a single eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in periodic cycles; some patients have continuous attacks, characterized by the lack of long symptom-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another found 64% of cluster patients experienced suicidal thoughts during attacks; the figure dropped to four percent when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, like several triggers, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated episodes. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was fired from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize daily activities around unpredictable pain took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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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 authors in a publication on the subject. They linked the disease to an malevolent spirit who afflicted his victims' heads.

Ancient medical records propose unusual remedies for what modern experts would classify as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with treatments including herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.

The disorder were only formally recognised by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the head. Leading experts in treating the condition explain this.

In the late 1990s, scientists released the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, identification remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other common head pain disorders, such as tension-type headache, before confirming cluster headaches. 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? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first go to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from the condition for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer talked me through oxygen treatment and medication until the attack passed.

Official guidance on management advise that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of well-known individuals.

But leading neurologists believe the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the cycle dictates the treatment.” Brief bouts with occasional attacks are handled with acute treatment alone. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that decreases nerve activity.

The national guidance need revising to reflect a