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It began on a dreary weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sharp pain erupted behind my one eye. Then came rapid stabs, similar to lightning bolts. As the school day progressed, the pain eased and then returned with increased force. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The attacks returned repeatedly that fall, and once more in spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-on pain in the classroom by mid-morning. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with severe pain behind one eye that persists up to three hours.

Approximately one in 1,000 people suffer by the condition, and males are more frequently diagnosed. Cluster headaches typically start with abrupt, excruciating agony focused on one 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 accompanied by red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in periodic bouts; others have continuous attacks, characterized by the lack of long symptom-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster patients reported suicidal thoughts during attacks; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. 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 bus home.

Her relatives often mistook her attacks as intoxicated behavior. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.

Still, the inability to plan life around erratic pain took its effect. She particularly disliked 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 most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the ailment to an evil spirit who afflicted his victims' heads.

Historical medical records propose unusual treatments for what modern experts would classify as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with treatments including bloodletting to other, more superstitious remedies.

It was a European physician who provided the first detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.

The disorder were only formally recognised by international medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the brain. Prominent specialists in diagnosing the disorder note this.

In 1998, scientists published the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other common headache disorders, such as migraine, before confirming cluster headaches. A thorough history is essential: on which side do signs occur? For how much time? What season? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a calm advisor guided them through oxygen treatment and drugs until the episode eased.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But consultant specialists believe the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle dictates the approach.” Brief cycles with occasional episodes are handled with acute treatment alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a