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It was a overcast weekday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. It was followed by rapid jolts, like electric shocks. As the school day progressed, the discomfort eased and then returned with greater force. Four times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I took aspirin, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and once more in the spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-blown pain in class by 9.30am. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense discomfort around one eye that lasts for several hours.

About one in 1,000 individuals suffer by the disorder, and men are more often affected. Cluster headaches usually begin with abrupt, excruciating pain around a single eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, defined by the lack of long pain-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster headache patients experienced suicidal thoughts during bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began 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 symptoms deteriorated through childhood. Alcohol in her teens, similar to many triggers, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her episodes as drunken behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to organize life around erratic attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after 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 winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Historical healing records propose unusual remedies for what modern observers would describe as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with treatments including bloodletting to other, more folk remedies.

It was a European doctor who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only formally classified by international headache committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the brain. Leading specialists in diagnosing the condition note this.

In 1998, scientists released the results of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a major medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such advances, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He works by eliminating other common head pain conditions, such as migraine, before confirming the disorder. A detailed history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an bout in 2021; a reassuring advisor talked me through oxygen treatment and drugs until the episode eased.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of some people.

But leading specialists believe the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout dictates the treatment.” Brief bouts with occasional episodes are handled with acute treatment only. Longer or more intense periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a