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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 sensation bloomed behind my one eye. This was followed by quick shocks, like electric shocks. As each class came and went, the discomfort eased and then came back with increased force. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I took paracetamol, but the pain remained unbearable.

The headaches returned repeatedly that fall, and once more in spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could predict the routine: aura in the morning, early twinges on the commute, full-on pain in class by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with severe discomfort behind a single eye that persists for three hours.

Approximately one in 1,000 people are affected by the condition, and men are more frequently affected. Cluster headaches typically begin with sudden, severe pain focused on a single eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in periodic cycles; others have continuous attacks, defined by the lack of extended symptom-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster headache patients reported suicidal thoughts amid attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her adolescence, like several triggers, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her family often interpreted her attacks as drunken behavior. 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 took clerical work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to organize daily activities around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across the ages. “The earliest description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the ailment to an evil spirit who attacked his victims' heads.

Ancient medical records propose bizarre treatments for what some observers would describe as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by global medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the brain. Leading experts in treating the condition note this.

In 1998, scientists published the findings of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, published in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in recently, after a physician researched his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from 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 molars pulled because dental professionals misinterpreted her pain. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor guided me through oxygen therapy and medication until the episode passed.

Official guidance on management recommend that patients are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently soothes the attacks of well-known individuals.

But leading neurologists believe the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Short cycles with infrequent episodes are handled with abortive treatment only. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that decreases nerve activity.

The national guidelines need updating to reflect a