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It was a dreary Monday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden pain erupted behind my right eye. This was followed by quick jolts, like lightning bolts. As the school day progressed, the pain eased and then came back with greater force. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the pain remained unrelenting.

The attacks returned repeatedly that autumn, and once more in the spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-blown pain in the classroom by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically start with severe discomfort behind one eye that lasts up to three hours.

About 1 in 1000 individuals are affected by the condition, and men are more often affected. Cluster headaches typically start with abrupt, severe pain focused on one eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in seasonal bouts; some patients have continuous cluster headaches, characterized by the lack of extended symptom-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the number fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to several triggers, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her episodes as drunken episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the failure to organize daily activities around unpredictable attacks took its toll. 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 children during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the disease to an evil entity who afflicted his sufferers' heads.

Historical healing texts propose bizarre remedies for what some observers would classify as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more folk remedies.

It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by global headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the head. Prominent experts in treating the disorder note this.

In 1998, researchers published the findings 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 prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before finally being correctly identified in 2014, after a doctor researched his symptoms.

Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common head pain conditions, such as migraine, before confirming the disorder. A thorough history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a calm volunteer talked them through oxygen therapy and medication until the episode passed.

Official guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But leading neurologists believe the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout determines the approach.” Short cycles with occasional attacks are handled with acute therapy alone. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that reduces nerve activity.

The national guidance need updating to reflect a