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It began on a gloomy weekday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain erupted behind my right eye. This was followed by rapid stabs, reminiscent of electric shocks. As the school day progressed, the discomfort eased and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The headaches returned repeatedly that fall, and again in spring, soon establishing an annual cycle. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-on agony in the classroom by mid-morning. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with intense discomfort behind a single eye that persists up to several hours.

About one in 1,000 individuals suffer by the disorder, and men are more often affected. Attacks usually start with abrupt, severe agony around a single eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in seasonal bouts; others have chronic attacks, defined by the absence of long symptom-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster headache patients reported suicidal thoughts during attacks; the figure dropped to 4% when they were pain-free.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like many causes, made things more intense. After drinking sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Still, the failure to plan life around erratic attacks took its toll. 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 incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the disease to an evil entity who attacked his victims' heads.

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

It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing daily at fixed hours”.

The disorder were only formally classified by international headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the brain. Prominent experts in diagnosing the condition note 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 data, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being diagnosed in recently, after a physician researched his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary headache disorders, such as migraine, before confirming the disorder. A detailed patient history is essential: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has experienced the condition for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, 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 charity, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a reassuring advisor guided me through oxygen therapy and medication until the episode eased.

National guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently soothes the attacks of well-known people.

But leading neurologists believe the guidance need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Brief bouts with infrequent episodes are handled with abortive treatment alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that reduces nerve activity.

The official guidelines need updating to reflect a