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It was a dreary Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp pain erupted behind my one eye. This was followed by rapid shocks, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then came back with greater force. Four times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unbearable.

The headaches returned frequently that fall, and again in the spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-on agony in the classroom by mid-morning. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with severe pain around one eye that persists up to several hours.

About one in 1,000 people suffer by the condition, and males are more frequently diagnosed. Cluster headaches typically start with abrupt, excruciating agony around one eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which occurs in periodic bouts; others have continuous cluster headaches, characterized by the absence of extended pain-free periods.

What unites patients is the severity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another found 64% of cluster headache patients reported suicidal thoughts amid bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, similar to several triggers, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated behavior. Support 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 found clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a national hospital.

Still, the inability to plan daily activities around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children 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 winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the disease to an evil spirit who attacked his victims' heads.

Historical medical records suggest unusual remedies for what some observers would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only officially classified by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Prominent specialists in treating the disorder explain this.

In the late 1990s, researchers released the findings of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in 2021; a calm volunteer guided them through oxygen therapy and medication until the episode passed.

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

But consultant specialists believe the official guidelines need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout dictates the approach.” Brief bouts with occasional episodes are managed with acute therapy only. More prolonged or more intense bouts 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 head where the discomfort is that decreases nerve activity.

The national guidance need updating to reflect a