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It began on a dreary Monday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense pain erupted behind my one eye. This was followed by quick shocks, like electric shocks. As each class came and went, the discomfort subsided and then returned with increased intensity. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches returned repeatedly that autumn, and again in the spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could predict the pattern: aura in the morning, early twinges on the train, full-on agony in class by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

This condition typically start with intense pain behind a single eye that lasts up to three hours.

Approximately 1 in 1000 people are affected by the disorder, and males are more frequently affected. Cluster headaches typically begin with abrupt, excruciating agony around one eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in seasonal bouts; others have continuous attacks, defined by the lack of extended symptom-free periods.

What unites patients is the severity. One research paper scored the pain at 9.7 10, higher than broken bones or pancreatitis. Another found 64% of cluster headache patients experienced suicidal thoughts amid attacks; the number dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, similar to several causes, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her attacks as drunken episodes. Understanding eventually came from her father and then from her partner, Rod. “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, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the inability to organize life around unpredictable pain took its effect. She especially hated 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 robs you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Historical healing records suggest unusual treatments for what some experts would classify as a migraine. In the medieval times, severe headache was identified as a distinct condition, with therapies including herbal concoctions to other, more folk remedies.

It was a European doctor who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery that supplies blood to the head. Prominent specialists in diagnosing the disorder note this.

In 1998, researchers released the results of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks dentists still need much more education. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an attack in 2021; a calm volunteer guided me through oxygen treatment and drugs until the attack passed.

Official guidance on management recommend that sufferers are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of well-known individuals.

But consultant specialists argue the official guidelines need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle dictates the approach.” Brief cycles with infrequent episodes are handled with abortive treatment only. Longer or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The national guidelines need updating to reflect a