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It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sharp sensation bloomed behind my right eye. This was followed by rapid shocks, reminiscent of lightning bolts. As each class came and went, the pain eased and then returned with greater intensity. Multiple times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I tried aspirin, but the agony remained unrelenting.

The headaches returned frequently that fall, and again in spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-on agony in the classroom by 9.30am. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically begin with severe pain behind a single eye that persists up to three hours.

About one in 1,000 people suffer by the condition, and males are more often affected. Cluster headaches typically start with sudden, severe pain focused on a single eye that peaks within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in seasonal bouts; others have chronic cluster headaches, defined by the lack of long symptom-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to several triggers, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated behavior. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the inability to plan daily activities around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the disease to an malevolent entity who attacked his victims' heads.

Ancient medical records suggest bizarre treatments for what modern observers would classify as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a European physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and disappearing daily at fixed hours”.

The disorder were only formally classified by international headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the brain. Leading experts in diagnosing 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, published in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, identification remains slow. One man's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in early 2021; a calm volunteer guided them through oxygen therapy and drugs until the episode eased.

National guidelines on management advise that patients are offered high-dose oxygen therapy and/or a specific medication administered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of some people.

But consultant neurologists believe the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Short bouts with infrequent attacks are handled with abortive therapy alone. More prolonged 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 injection into the area of the skull where the discomfort is that reduces nerve activity.

The national guidance need revising to reflect a