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It was a dreary weekday morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense sensation erupted behind my one eye. Then came rapid stabs, similar to electric shocks. As the school day came and went, the discomfort eased and then returned with increased intensity. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I took aspirin, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and again in the spring, soon forming an annual cycle. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-on pain in class by mid-morning. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with intense pain around a single eye that lasts for three hours.

Approximately 1 in 1000 individuals suffer by the disorder, and men are more frequently affected. Cluster headaches typically begin with abrupt, excruciating pain focused on a single eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which arrives in periodic cycles; others have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the number fell to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like several causes, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often interpreted her attacks as drunken behavior. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize daily activities around unpredictable attacks took its effect. She especially hated being unable to plan social events, being seen as flaky 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 simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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

Ancient healing texts propose unusual remedies for what some observers would describe as a migraine. In the medieval times, migraine was recognised as a separate condition, with therapies including herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing each day at specific hours”.

The disorder were only formally classified by global headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the brain. Prominent specialists in diagnosing the disorder note this.

In 1998, scientists published the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other common head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer guided me through oxygen treatment and medication until the episode eased.

Official guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of some individuals.

But consultant specialists argue the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Short bouts with infrequent episodes are handled with abortive treatment alone. Longer or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that reduces nerve activity.

The national guidelines need updating to reflect a