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It began on a dreary Monday morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense sensation erupted behind my right eye. It was followed by quick shocks, like electric shocks. As each class came and went, the discomfort eased and then came back with increased intensity. Multiple times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cool water. I tried aspirin, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and again in spring, soon establishing an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-on pain in class by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense pain behind a single eye that persists for three hours.

About 1 in 1000 people suffer by the condition, and men are more often diagnosed. Cluster headaches typically start with abrupt, excruciating pain focused on a single eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in seasonal cycles; others have continuous attacks, defined by the absence of extended symptom-free periods.

What unites patients is the intensity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to several causes, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated behavior. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan life around unpredictable pain took its toll. She particularly disliked 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 worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Ancient medical texts suggest bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with treatments including herbal concoctions to other, more folk cures.

It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.

The disorder were only officially classified by global medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the head. Prominent experts in treating the condition explain this.

In the late 1990s, scientists released the results of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, published in a major medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a calm volunteer guided them through oxygen treatment and medication until the episode eased.

Official guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of some people.

But leading specialists believe the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle determines the approach.” Short bouts with occasional episodes are handled with acute therapy alone. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that decreases nerve activity.

The national guidelines need revising to reflect a