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It began on a gloomy weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sudden sensation erupted behind my one eye. Then came rapid shocks, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I took aspirin, but the agony remained unbearable.

The attacks appeared frequently that fall, and again in the spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-on agony in class by mid-morning. In late 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

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

Approximately 1 in 1000 people suffer by the condition, and men 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 up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in periodic cycles; some patients have continuous attacks, defined by the absence of long pain-free periods.

What connects sufferers is the intensity. One research paper rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to several triggers, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken episodes. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Nevertheless, the inability to plan life around erratic attacks took its effect. 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 family during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They attributed the disease to an evil spirit who afflicted his victims' heads.

Historical healing records suggest bizarre remedies for what some observers would describe as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing daily at fixed hours”.

Cluster headaches were only officially recognised by international headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the brain. Prominent specialists in diagnosing the disorder note this.

In the late 1990s, scientists released the findings of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The data, featured in a prominent 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 recovered.

Despite such progress, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had multiple operations before finally being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other common headache disorders, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a reassuring advisor guided me through oxygen therapy and medication until the episode passed.

National guidelines on treatment advise that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the bouts of well-known individuals.

But leading specialists argue the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Short cycles with occasional attacks are handled with abortive treatment alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that decreases nerve activity.

The official guidelines need revising to reflect a