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It was a overcast Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a intense sensation sprang behind my right eye. This was followed by rapid shocks, reminiscent of electric shocks. As each class progressed, the pain eased and then came back with increased intensity. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The attacks returned frequently that fall, and once more in the spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-on agony in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with severe discomfort behind a single eye that persists up to three hours.

Approximately 1 in 1000 people are affected by the condition, and males are more often affected. Attacks usually begin with sudden, excruciating pain around a single eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in seasonal cycles; some patients have continuous cluster headaches, characterized by the absence of extended pain-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate found 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like several triggers, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her attacks as intoxicated episodes. Understanding finally came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a national hospital.

Still, the failure to plan life around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Ancient healing records suggest bizarre remedies for what modern observers would describe as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch 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 occurring and vanishing daily at specific hours”.

Cluster headaches were only formally classified by international medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the head. Prominent specialists in treating the disorder explain this.

In the late 1990s, scientists released the results of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, featured in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in 2014, after a physician researched his complaints.

Specialists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “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 confirming cluster headaches. A detailed history is essential: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a calm volunteer talked them through oxygen therapy and medication until the episode passed.

National guidelines on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of some people.

But leading neurologists argue the official guidelines need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle dictates the approach.” Brief cycles with occasional episodes are handled with acute treatment only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that reduces nerve signals.

The national guidelines need updating to reflect a