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It began on a dreary weekday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden pain sprang behind my one eye. This was followed by quick shocks, like lightning bolts. As each class progressed, the pain subsided and then came back with greater force. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.

The headaches appeared frequently that fall, and once more in spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-blown agony in class by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with intense pain around one eye that lasts for several hours.

About 1 in 1000 people are affected by the condition, and males are more frequently diagnosed. Cluster headaches usually start with sudden, excruciating pain around a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in periodic bouts; others have continuous attacks, defined by the absence of extended pain-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to several causes, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often mistook her episodes as drunken episodes. Understanding eventually came from her parent 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, in part due to absences during episodes. Her definitive identification came in the early 2000s at a national neurology center.

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

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Headaches have been described throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.

Historical medical texts propose bizarre treatments for what some observers would describe as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with treatments including bloodletting to other, more folk cures.

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

Cluster headaches were only formally recognised by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key artery that supplies blood to the brain. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, researchers published the findings of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four operations before finally being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an attack in early 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the episode eased.

National guidelines on management advise that patients are offered high-flow oxygen therapy 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 attacks of some individuals.

But consultant specialists argue the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Short bouts with infrequent episodes are managed with acute therapy only. Longer or more severe bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that decreases nerve signals.

The official guidelines need updating to reflect a