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It began on a dreary weekday morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense sensation sprang behind my right eye. This was followed by quick shocks, like electric shocks. As the school day progressed, the discomfort subsided and then came back with increased intensity. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The headaches appeared repeatedly that fall, and once more in spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could predict the pattern: aura in the morning, early pangs on the commute, full-blown pain in the classroom by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with severe discomfort behind a single eye that lasts up to three hours.

About one in 1,000 people suffer by the disorder, and men are more frequently diagnosed. Cluster headaches usually start with sudden, excruciating pain focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which occurs in seasonal bouts; some patients have continuous attacks, defined by the lack of extended symptom-free periods.

What unites sufferers is the severity. One study scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found 64% of cluster patients reported thoughts of self-harm during attacks; the number fell to 4% when they were pain-free.

Val Hobbs, 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 ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, like several causes, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the inability to plan life around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Historical healing records suggest unusual remedies for what some observers would classify as a migraine. In the medieval times, migraine was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.

The disorder were only formally recognised by global headache committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the head. Leading experts in diagnosing the condition explain this.

In 1998, researchers published the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such advances, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before finally being correctly identified in recently, after a physician looked up his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which side do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has suffered from the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes the dental profession 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 attack in 2021; a calm volunteer guided them through oxygen treatment and medication until the episode passed.

Official guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But leading specialists argue the guidance need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout determines the approach.” Brief bouts with infrequent attacks are managed with abortive treatment alone. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a