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It began on a gloomy weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sudden pain bloomed behind my one eye. This was followed by rapid stabs, similar to lightning bolts. As each class progressed, the pain subsided and then came back with increased intensity. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and again in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-on pain in class by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with severe pain behind a single eye that persists for several hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more often diagnosed. Cluster headaches typically begin with abrupt, severe pain around a single eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in seasonal cycles; some patients have chronic attacks, defined by the lack of extended pain-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were not in pain.

One patient, 74, a long-term patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, like several triggers, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated episodes. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national hospital.

Still, the failure to organize life around unpredictable pain took its toll. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode 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 experts in a publication on the topic. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

Historical medical texts suggest unusual remedies for what modern experts would classify as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more folk remedies.

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

The disorder were only officially recognised by international headache committees in 1988. From the mid-20th century to the 1990s, they were thought 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, researchers published the findings of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, featured in a prominent medical publication, 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. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four surgeries before eventually being diagnosed in recently, after a doctor researched his complaints.

Specialists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She believes dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the attack eased.

National guidelines on management recommend that patients are offered high-flow oxygen and/or a specific drug administered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of some people.

But leading specialists argue the guidance need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle dictates the treatment.” Short cycles with infrequent episodes are managed with abortive therapy alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that decreases nerve activity.

The national guidelines need revising to reflect a