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It began on a dreary Monday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden sensation erupted behind my one eye. Then came quick stabs, reminiscent of electric shocks. As each class came and went, the discomfort eased and then came back with increased force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I took paracetamol, but the agony remained unbearable.

The headaches returned repeatedly that autumn, and once more in the spring, soon establishing an annual cycle. September and October were the most severe, then the late winter. I could predict the pattern: aura in the morning, early twinges on the train, full-on agony in class by 9.30am. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition often begin with severe pain behind one eye that lasts up to three hours.

Approximately one in 1,000 people are affected by the condition, and men are more frequently affected. Attacks usually start with sudden, severe agony focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in seasonal bouts; some patients have continuous cluster headaches, defined by the absence of long symptom-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster headache patients reported suicidal thoughts amid attacks; the figure fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like several causes, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize daily activities around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent entity who afflicted his victims' heads.

Ancient healing texts propose unusual remedies for what modern experts would describe as a migraine. In the middle ages, severe headache was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at specific hours”.

Cluster headaches were only formally recognised by global medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the head. Leading experts in diagnosing the disorder explain this.

In 1998, scientists released the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being diagnosed in 2014, after a doctor researched his complaints.

Specialists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from the condition for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes dentists still need much more education. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an attack in early 2021; a calm advisor guided me through oxygen treatment and medication until the episode eased.

Official guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of well-known individuals.

But leading specialists argue the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle determines the treatment.” Short bouts with infrequent episodes are managed with abortive therapy only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that reduces nerve activity.

The official guidelines need revising to reflect a