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It was a dreary weekday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain sprang behind my right eye. It was followed by quick shocks, like lightning bolts. As each class progressed, the discomfort eased and then came back with greater force. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The attacks returned repeatedly that autumn, and again in the spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the train, full-on agony in class by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with severe discomfort around a single eye that lasts up to three hours.

About 1 in 1000 people are affected by the disorder, and males are more often diagnosed. Cluster headaches usually begin with sudden, excruciating agony around one eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in seasonal bouts; others have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster patients experienced suicidal thoughts during bouts; the number fell to 4% when they were pain-free.

One patient, 74, a long-term patient from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to several causes, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

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

Still, the inability to organize daily activities around erratic attacks took its toll. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family 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 recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the ailment to an evil entity who attacked his victims' heads.

Ancient medical texts suggest bizarre remedies for what modern observers would describe as a migraine. In the middle ages, severe headache was identified as a separate disorder, with treatments including bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially recognised by international headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the head. Leading experts in treating the disorder note this.

In the late 1990s, scientists published the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being diagnosed in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist centers. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced 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 dentists misunderstood her pain. She believes dentists still need much more education. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an attack in 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the attack passed.

Official guidelines on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But leading specialists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout dictates the approach.” Short bouts with infrequent episodes are handled with abortive therapy alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a