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It was a overcast weekday morning in the autumn of 2016. I was working 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 stabs, similar to lightning bolts. As each class came and went, the discomfort 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 cold water. I took paracetamol, but the agony remained unbearable.

The attacks returned repeatedly that fall, and once more in the spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-on pain in class by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with intense discomfort around a single eye that lasts for several hours.

Approximately one in 1,000 people suffer by the disorder, and men are more often affected. Attacks typically start with sudden, severe pain focused on one eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, 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 arrives in periodic bouts; others have chronic cluster headaches, defined by the absence of extended pain-free periods.

What connects sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another found 64% of cluster patients reported thoughts of self-harm amid attacks; the number dropped to 4% when they were not in pain.

One patient, 74, a chronic patient from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like several triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed 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 specialist neurology center.

Still, the inability to plan daily activities around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Ancient medical records propose unusual treatments for what some experts would describe as a migraine. In the medieval times, severe headache was identified as a separate condition, with therapies ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally classified by global headache 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 that supplies blood to the head. Prominent specialists in diagnosing the condition note this.

In the late 1990s, researchers released the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such advances, identification remains slow. One man's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before eventually being diagnosed in recently, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by eliminating other common headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first go to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority 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 misinterpreted her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a calm volunteer guided them through oxygen therapy and drugs until the episode eased.

National guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.

But leading specialists believe the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle determines the treatment.” Short cycles with occasional episodes are managed with acute treatment alone. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of 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 official guidance need revising to reflect a