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It was a overcast weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sharp pain sprang behind my right eye. Then came rapid jolts, similar to lightning bolts. As each class progressed, the pain eased and then returned with greater intensity. Multiple times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.

The attacks returned repeatedly that autumn, and again in spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-on pain in class by mid-morning. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe discomfort around one eye that persists for three hours.

About one in 1,000 people are affected by the condition, and men are more frequently diagnosed. Attacks typically begin with sudden, excruciating agony focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in periodic cycles; others have continuous cluster headaches, defined by the lack of extended symptom-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the number dropped to 4% when they were pain-free.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks 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 teens, similar to several triggers, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Understanding eventually 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 office work after moving, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Still, the inability to plan life around erratic pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.

Historical medical texts propose bizarre treatments for what modern observers would classify as a migraine. In the middle ages, migraine was identified as a distinct condition, with therapies ranging from bloodletting to other, more folk cures.

It was a European physician who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.

Cluster headaches were only officially 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 artery that delivers blood to the brain. Prominent specialists in treating the disorder note this.

In the late 1990s, researchers released the findings of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, published in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four operations before eventually being correctly identified in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her pain. She believes dentists still need much more education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the attack passed.

Official guidelines on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But consultant neurologists believe the official guidelines need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Short bouts with occasional episodes are handled with acute treatment alone. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that reduces nerve signals.

The official guidance need updating to reflect a