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It was a overcast weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sharp sensation bloomed behind my right eye. This was followed by quick jolts, similar to electric shocks. As each class progressed, the discomfort subsided and then came back with increased force. Multiple times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I tried aspirin, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and once more in the spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could predict the routine: aura in the shower, early pangs on the train, full-on pain in the classroom by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense pain around a single eye that lasts for several hours.

Approximately 1 in 1000 people are affected by the condition, and men are more frequently affected. Attacks usually start with abrupt, severe pain around a single eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in seasonal cycles; some patients have chronic cluster headaches, defined by the absence of extended symptom-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 10, higher than broken bones or other conditions. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to several triggers, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated behavior. Support 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 moving, but often concealed her illness. She was fired from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a specialist hospital.

Still, the inability to organize life around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, 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 remembers obtaining 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 first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.

Historical healing texts propose unusual remedies for what modern observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with therapies including bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially classified 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 blood vessel which supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.

In 1998, researchers published the findings of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such advances, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four operations before finally being correctly identified in recently, after a doctor looked up his complaints.

Neurologists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in 2021; a calm volunteer talked them through oxygen therapy and medication until the attack passed.

National guidelines on management recommend that patients are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of some people.

But consultant neurologists argue the guidance need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the bout determines the treatment.” Short bouts with infrequent episodes are handled with abortive therapy only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a