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It began on a overcast weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp pain sprang behind my right eye. Then came rapid stabs, like electric shocks. As the school day came and went, the discomfort subsided and then came back with greater intensity. Four 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 pain remained unbearable.

The attacks appeared repeatedly that autumn, and again in spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-on agony in the classroom by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often begin with severe discomfort behind one eye that lasts for several hours.

About one in 1,000 people suffer by the disorder, and males are more often diagnosed. Attacks typically start with sudden, excruciating agony focused on one eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which arrives in seasonal cycles; others have chronic cluster headaches, defined by the absence of long symptom-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate found 64% of cluster headache patients reported 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 Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to several causes, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the failure to plan life around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family 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 recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They attributed the disease to an evil spirit who afflicted his sufferers' heads.

Historical medical texts suggest bizarre remedies for what some observers would describe as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache happening and vanishing daily at specific hours”.

The disorder were only formally classified 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 blood vessel which delivers blood to the head. Leading experts in treating the condition note this.

In the late 1990s, researchers published the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a major medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such advances, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a 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 doctor researched his complaints.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a calm advisor guided me through oxygen therapy and medication until the episode eased.

National guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a specific drug administered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of well-known people.

But consultant neurologists argue the guidance need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle dictates the approach.” Short cycles with infrequent episodes are managed with abortive therapy alone. Longer or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a