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It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a intense sensation erupted behind my one eye. Then came quick jolts, like electric shocks. As each class progressed, the pain eased and then returned with increased intensity. Four 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 aspirin, but the agony remained unbearable.

The headaches returned frequently that fall, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the commute, full-on pain in the classroom by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with severe discomfort around a single eye that lasts up to three hours.

About 1 in 1000 people suffer by the condition, and men are more often diagnosed. Cluster headaches usually begin with sudden, severe pain focused on one eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which occurs in seasonal bouts; some patients have chronic attacks, defined by the lack of long pain-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 10, more severe than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the figure dropped to four percent when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like several triggers, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize daily activities around unpredictable attacks took its effect. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient medical records suggest bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

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

Cluster headaches were only formally recognised by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the head. Prominent experts in treating the disorder explain this.

In the late 1990s, researchers released the results of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four operations before finally being diagnosed in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other primary headache disorders, such as migraine, before confirming the disorder. A detailed history is crucial: on which side do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a calm advisor talked me through oxygen treatment and medication until the attack eased.

National guidance on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of some people.

But consultant specialists believe the guidance need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle determines the treatment.” Brief cycles with infrequent episodes are handled with acute treatment alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a