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It was a overcast Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a intense pain sprang behind my one eye. It was followed by rapid jolts, similar to lightning bolts. As each class came and went, the discomfort eased and then returned with greater force. Four times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The headaches returned repeatedly that fall, and again in the spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-blown agony in class by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically begin with intense pain behind one eye that lasts up to several hours.

About one in 1,000 people are affected by the condition, and men are more often diagnosed. Cluster headaches usually begin with sudden, excruciating pain focused on a single eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which occurs in seasonal cycles; others have continuous attacks, characterized by the lack of long symptom-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered 64% of cluster patients experienced thoughts of self-harm amid bouts; the figure fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like several causes, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the inability to plan life around unpredictable pain took its toll. She especially 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 incapacitation caused by the worst episodes. “It robs 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 episode inside a portable toilet.

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Headaches have been described throughout history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical medical records propose unusual treatments for what modern experts would describe as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more folk cures.

It was a European physician who provided the first detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing daily at fixed hours”.

Cluster headaches were only officially classified by global headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the head. Leading experts in treating the disorder note this.

In the late 1990s, scientists released the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such advances, diagnosis remains slow. One man's attacks began in the 1980s 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 finally being diagnosed in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a reassuring volunteer talked them through oxygen therapy and medication until the episode eased.

National guidance on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently soothes the attacks of well-known people.

But leading neurologists believe the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle dictates the treatment.” Short cycles with occasional attacks are handled with abortive therapy alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a