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It began on a gloomy weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sharp pain bloomed behind my right eye. It was followed by rapid shocks, reminiscent of electric shocks. As each class came and went, the pain subsided and then came back with increased force. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unbearable.

The attacks returned repeatedly that fall, and once more in the spring, soon establishing an yearly cycle. The autumn months were the worst, then February and March. I could predict the pattern: aura in the shower, early pangs on the train, full-on agony in the classroom by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

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

About 1 in 1000 individuals are affected by the disorder, and men are more frequently affected. Cluster headaches typically begin with sudden, severe agony focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in periodic cycles; some patients have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the figure dropped to four percent when they were pain-free.

One patient, 74, a long-term patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to several triggers, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated episodes. Understanding finally came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the failure to plan life around erratic attacks 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 paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the disease to an evil entity who attacked his sufferers' heads.

Ancient medical records suggest unusual treatments for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with therapies ranging from bloodletting to other, more folk cures.

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

The disorder were only officially recognised by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the brain. Leading experts in treating the condition explain this.

In 1998, scientists released the results of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in 2014, after a doctor researched his complaints.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a calm volunteer talked them through oxygen treatment and drugs until the attack passed.

Official guidance on management advise that sufferers are offered high-flow oxygen and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of some people.

But leading specialists argue the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Short bouts with occasional attacks are managed with acute therapy alone. Longer or more intense periods require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that reduces nerve signals.

The official guidance need revising to reflect a