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It was a overcast Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a intense sensation bloomed behind my one eye. Then came quick shocks, reminiscent of electric shocks. As each class came and went, the pain eased and then returned with increased force. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.

The headaches appeared frequently that autumn, and once more in the spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-on pain in class by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with intense pain behind a single eye that persists for several hours.

Approximately one in 1,000 people are affected by the condition, and males are more often diagnosed. Cluster headaches typically start with abrupt, severe pain focused on a single eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in seasonal cycles; some patients have chronic attacks, defined by the absence of extended pain-free periods.

What unites patients is the intensity. One study scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the figure fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, similar to several causes, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to organize life around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the disease to an evil entity who attacked his victims' heads.

Ancient medical records suggest unusual treatments for what some observers would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially classified by global headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the head. Leading experts in treating the condition explain this.

In 1998, scientists released the findings of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other primary head pain conditions, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for most 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 misunderstood her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the episode passed.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of some people.

But consultant specialists believe the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Brief cycles with occasional episodes are managed with acute treatment alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that decreases nerve activity.

The national guidance need revising to reflect a