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It was a dreary Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation erupted behind my right eye. Then came quick shocks, reminiscent of lightning bolts. As the school day progressed, the pain eased and then came back with greater intensity. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and again in the spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could predict the routine: aura in the morning, early pangs on the train, full-on pain in the classroom by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with intense pain behind a single eye that lasts up to several hours.

Approximately one in 1,000 people suffer by the disorder, and males are more often diagnosed. Attacks typically begin with abrupt, excruciating agony focused on a single eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which occurs in periodic bouts; some patients have chronic attacks, defined by the lack of extended pain-free periods.

What connects sufferers is the severity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like many causes, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks as drunken behavior. 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 found office work after relocating, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the failure to plan life around unpredictable attacks took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls 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 description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the ailment to an evil entity who attacked his victims' heads.

Ancient healing texts suggest bizarre remedies for what modern observers would describe as a migraine. In the middle ages, severe headache was identified as a separate condition, with treatments ranging from herbal concoctions to other, more folk cures.

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

The disorder were only officially classified by international medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the head. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, scientists published the findings of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, featured in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a reassuring advisor talked me through oxygen therapy and medication until the attack eased.

Official guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the bouts of well-known people.

But consultant neurologists argue the guidance need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Short cycles with occasional attacks are managed with acute treatment alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a