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It began on a dreary weekday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp sensation bloomed behind my one eye. This was followed by rapid shocks, reminiscent of electric shocks. As the school day progressed, the discomfort subsided and then returned with increased intensity. Four times that day I handed over a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I took paracetamol, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and again in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-on pain in the classroom by 9.30am. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with intense pain around a single eye that persists up to three hours.

About one in 1,000 people are affected by the disorder, and men are more frequently affected. Attacks typically begin with abrupt, severe agony focused on a single eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in periodic bouts; some patients have continuous attacks, defined by the absence of extended pain-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster headache patients reported suicidal thoughts during bouts; the figure dropped to four percent when they were pain-free.

One patient, 74, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, similar to several causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as intoxicated episodes. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan daily activities around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after 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 significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical medical records suggest bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.

The disorder were only formally classified by international medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the brain. Leading experts in treating the condition explain this.

In 1998, scientists published the results of a research project for which they had induced cluster headaches in patients and observed 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, identification remains slow. One man's attacks 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 four surgeries before eventually being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other common headache disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in 2021; a calm volunteer guided me through oxygen therapy and medication until the episode passed.

Official guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of some people.

But consultant neurologists believe the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the bout dictates the treatment.” Brief cycles with infrequent episodes are managed with abortive therapy only. More prolonged or more severe 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 discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a