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It was a dreary weekday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sudden sensation erupted behind my right eye. This was followed by quick jolts, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then came back with increased force. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.

The attacks returned frequently that fall, and again in spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early twinges on the commute, full-on agony in class by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with severe discomfort around a single eye that persists for three hours.

About 1 in 1000 individuals are affected by the disorder, and men are more frequently diagnosed. Cluster headaches usually start with abrupt, excruciating pain focused on one eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in seasonal bouts; others have chronic cluster headaches, defined by the absence of extended pain-free periods.

What connects patients is the intensity. One study scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate found 64% of cluster headache patients experienced thoughts of self-harm during attacks; the number fell to 4% when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like several causes, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.

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

Nevertheless, the inability to organize daily activities around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the disease to an evil entity who afflicted his sufferers' heads.

Ancient medical records suggest unusual treatments for what some observers would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with therapies including bloodletting to other, more superstitious cures.

It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by global headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the brain. Leading experts in treating the disorder explain this.

In 1998, researchers published the results of a study for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, featured in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which side do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a calm volunteer talked them through oxygen treatment and drugs until the episode eased.

National guidance 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. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of some people.

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

The official guidelines need revising to reflect a