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It began on a dreary weekday morning in September 2016. I worked as a teacher, trying to settle a new class, when a intense pain sprang behind my right eye. This was followed by rapid jolts, reminiscent of lightning bolts. As the school day progressed, the pain eased and then came back with increased intensity. Four times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The headaches returned frequently that fall, and once more in spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the routine: aura in the morning, early twinges on the train, full-blown agony in the classroom by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with intense discomfort behind one eye that persists up to several hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more often diagnosed. Attacks typically begin with sudden, severe pain around a single eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in seasonal bouts; others have chronic attacks, defined by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to several causes, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Still, the inability to organize daily activities around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the disease to an evil spirit who attacked his sufferers' heads.

Ancient medical texts propose bizarre remedies for what some observers would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with treatments including herbal concoctions to other, more folk cures.

It was a European physician who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at specific hours”.

The disorder were only officially recognised by international medical societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery that delivers blood to the head. Leading specialists in diagnosing the condition note this.

In the late 1990s, researchers released the results of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before finally being diagnosed in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He works by eliminating other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an bout in 2021; a calm advisor guided them through oxygen treatment and drugs until the attack passed.

Official guidance on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly soothes the attacks of well-known individuals.

But consultant neurologists believe the guidance need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the cycle dictates the treatment.” Brief cycles with occasional attacks are handled with abortive treatment only. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the discomfort is that decreases nerve activity.

The national guidance need revising to reflect a