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It began on a overcast Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a intense sensation erupted behind my right eye. This was followed by rapid stabs, reminiscent of electric shocks. As each class came and went, the pain eased and then returned with increased intensity. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I took aspirin, but the agony remained unbearable.

The attacks returned repeatedly that fall, and again in spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-on agony in the classroom by mid-morning. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense discomfort around one eye that persists up to several hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more often diagnosed. Cluster headaches usually begin with abrupt, severe agony around a single eye that reaches its peak within a short time and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in seasonal cycles; others have continuous attacks, defined by the absence of long symptom-free periods.

What connects patients is the severity. 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 thoughts of self-harm amid attacks; the figure fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to many causes, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her family often interpreted her attacks as drunken episodes. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan daily activities around erratic attacks took its effect. She especially disliked 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 incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Historical medical records suggest bizarre treatments for what modern experts would describe as a migraine. In the middle ages, severe headache was identified as a separate condition, with therapies ranging from bloodletting to other, more folk cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the head. Leading specialists in treating the disorder note this.

In the late 1990s, researchers released the results of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, identification remains delayed. One man's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being diagnosed in recently, after a doctor researched his complaints.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient 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? Certain features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in 2021; a calm advisor guided me through oxygen therapy and drugs until the episode eased.

National guidelines on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.

But leading neurologists believe the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout determines the approach.” Brief cycles with infrequent episodes are managed with abortive treatment alone. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the head where the discomfort is that reduces nerve signals.

The official guidelines need revising to reflect a