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It was a dreary weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden sensation sprang behind my one eye. Then came quick shocks, reminiscent of lightning bolts. As each class progressed, the pain subsided and then came back with greater force. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and once more in the spring, soon forming an annual pattern. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-on agony in class by 9.30am. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

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

Approximately one in 1,000 people suffer by the condition, and men are more often diagnosed. Attacks typically begin with sudden, severe agony around a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, characterized by the lack of extended symptom-free periods.

What unites sufferers is the intensity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster patients reported suicidal thoughts during bouts; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to several triggers, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated episodes. Support eventually came from her father 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 condition. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to organize life around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the ailment to an evil entity who afflicted his victims' heads.

Ancient healing texts suggest unusual treatments for what modern observers would describe as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.

The disorder were only officially classified by international headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the brain. Leading experts in diagnosing the disorder 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 medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in 2021; a reassuring volunteer guided me through oxygen treatment and medication until the attack eased.

Official guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.

But leading neurologists argue the official guidelines need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout determines the treatment.” Brief bouts with infrequent episodes are managed with acute treatment alone. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that reduces nerve activity.

The official guidelines need revising to reflect a