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It was a overcast weekday morning in September 2016. I worked as a educator, attempting to manage a new class, when a sharp sensation bloomed behind my one eye. Then came quick jolts, reminiscent of electric shocks. As each class progressed, the pain eased and then came back with greater intensity. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The headaches appeared frequently that autumn, and again in the spring, soon forming an annual cycle. September and October were the worst, then February and March. I could predict the routine: aura in the morning, early pangs on the train, full-on pain in the classroom by 9.30am. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with intense pain around a single eye that lasts up to several hours.

About 1 in 1000 individuals suffer by the condition, and men are more frequently diagnosed. Cluster headaches usually begin with abrupt, excruciating pain focused on a single eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in periodic cycles; others have chronic attacks, defined by the lack of extended pain-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate found 64% of cluster headache patients reported thoughts of self-harm during bouts; the number fell to four percent when they were not in pain.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like several causes, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken episodes. Support eventually came from her parent 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 hid her illness. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize daily activities around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the disease to an malevolent entity who attacked his victims' heads.

Ancient medical texts suggest unusual remedies for what some experts would classify as a headache disorder. In the middle ages, migraine was identified as a separate condition, with therapies ranging from bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

The disorder were only formally recognised by global headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the brain. Leading experts in diagnosing the condition explain this.

In 1998, researchers released the results of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, published in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before finally being diagnosed in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other primary head pain disorders, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from the condition for the majority 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 dentists misunderstood her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the attack passed.

National guidance on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of well-known individuals.

But leading neurologists believe the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle dictates the treatment.” Short cycles with occasional episodes are handled with acute treatment alone. Longer or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that decreases nerve signals.

The national guidelines need updating to reflect a