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It was a gloomy Monday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a sharp sensation erupted behind my right eye. This was followed by rapid jolts, similar to electric shocks. As each class progressed, the pain eased and then returned with greater force. Four times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The attacks appeared frequently that fall, and again in spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-blown pain in class by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with severe discomfort behind a single eye that lasts up to three hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more frequently affected. Cluster headaches typically begin with abrupt, severe agony focused on one eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal cycles; others have chronic attacks, characterized by the absence of long pain-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients experienced suicidal thoughts during attacks; the number fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to several triggers, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her attacks as drunken episodes. Support eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a national hospital.

Nevertheless, the inability to plan daily activities around unpredictable attacks took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the ailment to an evil spirit who afflicted his sufferers' heads.

Ancient healing records suggest bizarre treatments for what modern observers would describe as a migraine. In the middle ages, migraine was recognised as a distinct condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only officially recognised by global medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the brain. Leading specialists in diagnosing the disorder note this.

In 1998, scientists released the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a major journal, showed activation of the a brain region, 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, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But many first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced the condition for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in early 2021; a reassuring advisor guided them through oxygen therapy and drugs until the attack eased.

National guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of well-known individuals.

But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the approach.” Brief bouts with occasional episodes are handled with abortive treatment only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve signals.

The official guidance need revising to reflect a