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It began on a gloomy Monday 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 right eye. It was followed by quick shocks, like electric shocks. As the school day progressed, the pain eased and then came back with greater force. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the agony remained unbearable.

The headaches appeared frequently that fall, and once more in spring, soon establishing an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the train, full-on agony in class by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with intense discomfort behind one eye that persists up to several hours.

Approximately one in 1,000 people suffer by the disorder, and men are more frequently affected. Cluster headaches typically start with sudden, excruciating agony focused on one eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which occurs in seasonal bouts; others have continuous attacks, characterized by the absence of long pain-free periods.

What unites patients is the severity. One study rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like many triggers, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated episodes. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.

Still, the inability to organize life around unpredictable pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the disease to an evil entity who attacked his victims' heads.

Historical healing records suggest bizarre treatments for what modern observers would describe as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with therapies including bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

Cluster headaches were only formally recognised by global headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the brain. Leading experts in diagnosing the disorder note this.

In 1998, researchers released the findings of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

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

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He works by eliminating other primary head pain conditions, such as migraine, before confirming cluster headaches. A thorough history is essential: on which side do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has suffered from the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in early 2021; a reassuring advisor talked me through oxygen treatment and medication until the episode eased.

National guidelines on treatment advise that patients are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of well-known people.

But leading specialists argue the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout dictates the treatment.” Brief bouts with infrequent episodes are managed with acute therapy alone. Longer or more intense periods require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a