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It began on a gloomy Monday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden pain erupted behind my right eye. Then came quick jolts, similar to electric shocks. As each class came and went, the discomfort subsided and then came back with increased force. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried aspirin, but the agony remained unbearable.

The attacks returned repeatedly that autumn, and once more in spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-on agony in the classroom by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense pain around one eye that lasts up to three hours.

About 1 in 1000 people suffer by the condition, and males are more frequently affected. Cluster headaches typically begin with sudden, severe agony focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, every day 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 periodic cycles; others have chronic attacks, defined by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the figure fell to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to many triggers, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a specialist hospital.

Nevertheless, the failure to organize life around erratic pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an evil entity who attacked his sufferers' heads.

Ancient medical records propose bizarre remedies for what some observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with treatments including herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only formally classified by global headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the head. Prominent specialists in diagnosing the condition explain this.

In 1998, scientists released the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, identification remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which side do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars extracted because dentists misunderstood her pain. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a reassuring advisor talked them through oxygen treatment and medication until the attack eased.

Official guidelines on management advise that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But leading neurologists believe the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle dictates the approach.” Brief bouts with infrequent attacks are handled with acute therapy only. Longer or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that decreases nerve activity.

The official guidelines need revising to reflect a