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It was a overcast weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation bloomed behind my one eye. Then came quick stabs, reminiscent of electric shocks. As each class came and went, the pain eased and then returned with greater intensity. Four times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cool water. I took paracetamol, but the agony remained unbearable.

The attacks appeared repeatedly that autumn, and again in the spring, soon forming an annual pattern. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically begin with severe discomfort around a single eye that lasts up to three hours.

Approximately 1 in 1000 individuals suffer by the condition, and men are more frequently diagnosed. Cluster headaches usually start with sudden, excruciating pain focused on 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 red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in periodic cycles; some patients have continuous 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, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster patients experienced thoughts of self-harm amid bouts; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. 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 symptoms worsened through her youth. Alcohol in her teens, similar to several causes, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Understanding eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the failure to organize life around erratic attacks took its effect. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a book on the topic. They attributed the disease to an malevolent entity who attacked his victims' heads.

Ancient medical texts propose unusual treatments for what modern observers would classify as a migraine. In the middle ages, severe headache was identified as a separate disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a European doctor who provided the first detailed description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.

The disorder were only formally recognised by global headache societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the head. Prominent experts in diagnosing the disorder note this.

In 1998, researchers released the findings of a research project for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such progress, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other common headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a calm volunteer guided me through oxygen treatment and medication until the episode passed.

National guidelines on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of well-known people.

But consultant neurologists argue the guidance need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the bout dictates the treatment.” Brief cycles with occasional episodes are managed with acute therapy only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a