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It began on a overcast weekday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a intense pain erupted behind my one eye. It was followed by quick shocks, reminiscent of electric shocks. As each class came and went, the pain eased and then returned with increased intensity. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches appeared frequently that autumn, and again in spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the train, full-on pain in class by mid-morning. In 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with severe pain around a single eye that persists for several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more often diagnosed. Cluster headaches typically begin with sudden, excruciating pain around one eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in periodic bouts; others have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What connects patients is the severity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the number dropped to 4% when they were pain-free.

One patient, 74, a long-term patient from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to several triggers, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to organize daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from 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 history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Ancient healing records propose unusual remedies for what modern experts would describe as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at specific hours”.

The disorder were only officially recognised by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the head. Prominent specialists in diagnosing the condition note this.

In the late 1990s, researchers published the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains slow. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being correctly identified in recently, after a doctor looked up his complaints.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough history is essential: on which side do signs occur? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an attack in 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the episode passed.

Official guidance on management recommend that sufferers are offered high-flow oxygen and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of some people.

But consultant specialists argue the official guidelines need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout determines the approach.” Brief bouts with occasional episodes are managed with abortive therapy only. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that decreases nerve signals.

The national guidance need revising to reflect a