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It was a gloomy weekday morning in September 2016. I worked as a educator, trying to settle a new class, when a sudden pain erupted behind my right eye. This was followed by rapid shocks, reminiscent of lightning bolts. As each class progressed, the pain eased and then came back with greater force. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks appeared frequently that autumn, and again in the spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could predict the routine: aura in the shower, early twinges on the train, full-on pain in the classroom by 9.30am. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense pain around a single eye that persists for several hours.

Approximately 1 in 1000 people suffer by the condition, and males are more frequently diagnosed. Attacks typically start with abrupt, severe agony around one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in periodic bouts; others have continuous cluster headaches, characterized by the lack of long pain-free periods.

What connects patients is the intensity. One study scored the pain at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster patients reported suicidal thoughts during attacks; the number fell to 4% when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like many triggers, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated behavior. Support eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Still, the inability to organize life around erratic attacks took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from 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 attack inside a facility.

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Headaches have been documented throughout history. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Historical healing records suggest unusual treatments for what modern observers would describe as a migraine. In the medieval times, severe headache was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the first detailed account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only formally classified by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the head. Leading experts in treating the disorder explain this.

In the late 1990s, scientists released the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a major medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before finally being diagnosed in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other common headache disorders, such as migraine, before confirming the disorder. A thorough history is essential: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a calm volunteer guided me through oxygen treatment and medication until the episode eased.

National guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the bouts of well-known people.

But leading specialists believe the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout determines the approach.” Short cycles with infrequent episodes are handled with abortive treatment alone. Longer or more severe periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The national guidelines need updating to reflect a