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It was a dreary Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sudden pain erupted behind my right eye. This was followed by quick jolts, reminiscent of lightning bolts. As each class progressed, the discomfort subsided and then returned with greater intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I took paracetamol, but the agony remained unbearable.

The headaches returned frequently that autumn, and once more in spring, soon forming an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-blown pain in the classroom by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense pain behind one eye that persists up to three hours.

About 1 in 1000 people suffer by the disorder, and males are more often diagnosed. Attacks typically start with sudden, severe pain focused on a single eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in seasonal bouts; others have chronic cluster headaches, characterized by the absence of extended pain-free periods.

What connects patients is the severity. One research paper rated the pain at 9.7 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster patients experienced thoughts of self-harm during bouts; the figure fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to several causes, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated behavior. Support eventually 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 moving, but often concealed her illness. She was fired from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a specialist hospital.

Still, the inability to organize life around erratic pain took its effect. She especially 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 most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout the ages. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient medical texts propose bizarre treatments for what modern experts would describe as a headache disorder. In the medieval times, severe headache was identified as a separate disorder, with therapies ranging from bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial 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 classified by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the head. Prominent specialists in treating the condition explain this.

In the late 1990s, scientists published the findings of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being diagnosed in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She believes dentists still need much more education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a calm advisor guided them through oxygen therapy and medication until the attack eased.

National guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of well-known individuals.

But consultant neurologists believe the guidance need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Brief cycles with infrequent attacks are managed with acute therapy only. More prolonged or more severe periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The national guidelines need updating to reflect a