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It was a overcast Monday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp pain erupted behind my one eye. It was followed by quick jolts, like electric shocks. As the school day progressed, the discomfort subsided and then returned with increased intensity. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unbearable.

The attacks returned frequently that fall, and once more in spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the commute, full-blown pain in the classroom by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe pain behind one eye that persists for three hours.

About 1 in 1000 individuals suffer by the condition, and men are more frequently affected. Cluster headaches typically begin with sudden, excruciating pain focused on one eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; others have chronic cluster headaches, defined by the absence of extended pain-free periods.

What unites patients is the severity. One study scored the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate found 64% of cluster patients reported thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, like many causes, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken episodes. Support finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan daily activities around unpredictable attacks took its toll. She particularly 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 worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They attributed the disease to an malevolent spirit who attacked his victims' heads.

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

It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

Cluster headaches were only formally classified by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the brain. Leading experts in treating the condition explain this.

In the late 1990s, researchers published the findings of a study 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 circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains slow. One man's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being correctly identified in recently, after a physician researched his complaints.

Specialists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other common head pain conditions, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She believes dentists still need greater education. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an bout in early 2021; a reassuring volunteer guided them through oxygen treatment and medication until the attack passed.

National guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of some people.

But consultant specialists believe the guidance need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout dictates the treatment.” Brief bouts with infrequent episodes are managed with acute therapy alone. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a