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It was a gloomy Monday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a intense sensation erupted behind my one eye. This was followed by quick jolts, similar to lightning bolts. As each class came and went, the discomfort subsided and then returned with greater force. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the agony remained unrelenting.

The attacks appeared frequently that fall, and once more in the spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the train, full-blown pain in class by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with severe pain behind a single eye that lasts up to several hours.

Approximately 1 in 1000 individuals suffer by the condition, and men are more often diagnosed. Cluster headaches typically start with sudden, excruciating pain around a single eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in seasonal cycles; some patients have continuous attacks, defined by the lack of extended pain-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 10, higher than bone fractures or pancreatitis. Another found a significant percentage of cluster patients reported suicidal thoughts during attacks; the number fell to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like several triggers, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her family often interpreted 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 exceptional person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the failure to organize life around unpredictable attacks took its effect. She especially disliked 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 most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Historical healing texts suggest unusual treatments for what some observers would describe as a migraine. In the middle ages, migraine was identified as a distinct disorder, 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 severe headache occurring and disappearing daily at specific hours”.

The disorder were only officially classified by global medical societies in 1988. From the mid-20th century 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 disorder note this.

In the late 1990s, scientists released the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, identification remains delayed. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other common headache conditions, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which side do symptoms appear? For how much time? What season? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an attack in 2021; a reassuring volunteer talked them through oxygen therapy and medication until the episode eased.

Official guidelines on management advise that patients are offered high-flow oxygen and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly soothes the attacks of well-known individuals.

But leading specialists believe the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. 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 therapy alone. Longer or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a