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It was a dreary Monday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense pain sprang behind my right eye. Then came rapid stabs, similar to electric shocks. As each class came and went, the pain eased and then returned with greater force. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and once more in the spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could predict the routine: aura in the morning, early twinges on the train, full-blown agony in class by mid-morning. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with intense pain behind a single eye that persists for several hours.

Approximately 1 in 1000 people suffer by the condition, and men are more often affected. Attacks typically start with sudden, excruciating pain around a single eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in seasonal cycles; some patients have chronic cluster headaches, characterized by the lack of long pain-free periods.

What connects sufferers is the severity. One study scored the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like many causes, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to organize life around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis 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 described across history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the ailment to an evil entity who afflicted his victims' heads.

Ancient healing records propose unusual treatments for what some experts would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by international headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key 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 triggered attacks in patients and monitored the attacks in a imaging machine. The results, featured in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which side do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She believes dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a calm volunteer talked them 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 delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently soothes the attacks of some people.

But consultant neurologists believe the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout determines the approach.” Brief cycles with occasional attacks are managed with acute therapy alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a