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It was a gloomy Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sudden pain sprang behind my one eye. Then came rapid stabs, similar to lightning bolts. As the school day progressed, the pain eased and then returned with greater force. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the pain remained unbearable.

The attacks appeared frequently that autumn, and once more in the spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically begin with severe discomfort around one eye that persists for three hours.

Approximately one in 1,000 people suffer by the condition, and men are more often affected. Attacks usually begin with abrupt, excruciating pain around one eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. I have the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster patients reported suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to several causes, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. 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 concealed her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Still, the failure to organize daily activities around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls 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 first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the disease to an malevolent entity who attacked his sufferers' heads.

Historical healing texts propose unusual remedies for what some experts would classify as a migraine. In the middle ages, severe headache was identified as a separate disorder, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by international headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, researchers published the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a major medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four surgeries before eventually being diagnosed in recently, after a doctor researched his complaints.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other primary head pain disorders, such as migraine, before confirming the disorder. A detailed patient history is essential: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a reassuring volunteer guided them through oxygen therapy and medication until the episode passed.

National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.

But leading specialists argue the guidance need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Brief bouts with occasional attacks are handled with acute treatment only. Longer or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve activity.

The official guidance need updating to reflect a