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It was a gloomy weekday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a intense pain sprang behind my right eye. It was followed by rapid jolts, reminiscent of lightning bolts. As each class came and went, the discomfort subsided and then came back with increased force. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The headaches returned frequently that fall, and again in spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-on agony in the classroom by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with severe discomfort around a single eye that lasts up to several hours.

Approximately one in 1,000 people suffer by the condition, and males are more often affected. Attacks usually start with sudden, severe pain around a single eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, daily or several 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; some patients have continuous cluster headaches, defined by the absence of extended pain-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster patients reported suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like many causes, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to plan life around unpredictable attacks took its effect. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the disease to an evil spirit who afflicted his victims' heads.

Ancient healing texts suggest bizarre treatments for what some experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with treatments including bloodletting to other, more superstitious remedies.

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

The disorder were only formally recognised by global medical societies in the late 1980s. From the mid-20th century to the late 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 explain this.

In 1998, scientists 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 major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a calm advisor talked me through oxygen treatment and drugs until the attack eased.

Official guidance on management recommend that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the bouts of some individuals.

But leading specialists argue the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle dictates the approach.” Short cycles with occasional episodes are handled with acute treatment only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a