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It was a overcast weekday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden pain erupted behind my right eye. It was followed by rapid shocks, like lightning bolts. As each class came and went, the pain subsided and then came back with increased force. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I took paracetamol, but the agony remained unbearable.

The headaches returned frequently that autumn, and once more in the spring, soon forming 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-blown pain in class by 9.30am. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically begin with severe discomfort around a single eye that lasts for three hours.

Approximately one in 1,000 people are affected by the disorder, and males are more frequently affected. Cluster headaches usually start with abrupt, severe pain focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal cycles; others have chronic attacks, characterized by the lack of long pain-free periods.

What connects patients is the severity. One study rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another found 64% of cluster patients reported suicidal thoughts amid bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, like many triggers, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her attacks as intoxicated episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to organize daily activities around erratic pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They attributed the disease to an evil spirit who afflicted his victims' heads.

Ancient medical records suggest bizarre remedies for what some experts would classify as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

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

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

In the late 1990s, scientists released the results of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such advances, identification remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But many first go to A&E or are given unsuitable treatments.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes dentists still need much more education. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in early 2021; a reassuring volunteer talked them through oxygen treatment and medication until the attack passed.

Official guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of well-known people.

But consultant specialists argue the guidance need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Short cycles with infrequent attacks are handled with abortive treatment alone. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the head where the discomfort is that reduces nerve activity.

The national guidance need updating to reflect a