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It was a dreary weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sharp pain bloomed behind my one eye. It was followed by rapid shocks, like lightning bolts. As the school day came and went, the pain eased and then came back with greater force. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I took paracetamol, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and again in the spring, soon establishing an yearly cycle. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-on pain in class by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe discomfort around a single eye that lasts up to several hours.

Approximately 1 in 1000 people suffer by the condition, and men are more frequently affected. Attacks usually start with abrupt, excruciating pain around one eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in seasonal cycles; others have chronic attacks, defined by the lack of extended pain-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 10, higher than broken bones or other conditions. Another found 64% of cluster patients experienced thoughts of self-harm during attacks; the figure fell to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to several triggers, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often mistook her attacks as drunken behavior. Support eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Still, the inability to organize daily activities around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, 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 value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Historical medical texts suggest unusual remedies for what modern observers would classify as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with treatments ranging from bloodletting to other, more folk remedies.

It was a European 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 occurring and disappearing daily at specific hours”.

Cluster headaches were only formally recognised by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the brain. Leading specialists in diagnosing the condition note this.

In 1998, researchers published the findings of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, featured in a major journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four operations before eventually being diagnosed in recently, after a physician researched his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by ruling out other common headache disorders, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has suffered from 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 extracted because dental professionals misunderstood her symptoms. She believes the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer talked them through oxygen treatment and medication until the episode eased.

National guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly soothes the attacks of well-known people.

But leading neurologists believe the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout determines the approach.” Brief bouts with occasional attacks are managed with acute therapy alone. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve activity.

The national guidance need revising to reflect a