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It was a gloomy Monday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. Then came rapid stabs, reminiscent of electric shocks. As each class came and went, the pain eased and then came back with greater intensity. Multiple times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I took aspirin, but the agony remained unbearable.

The attacks returned frequently that fall, and once more in the spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could predict the routine: aura in the shower, early twinges on the train, full-on agony in the classroom by mid-morning. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with severe discomfort around one eye that lasts up to several hours.

Approximately one in 1,000 people suffer by the condition, and men are more often affected. Cluster headaches usually begin with abrupt, severe agony focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which occurs in periodic bouts; others have chronic attacks, defined by the lack of long symptom-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to many causes, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her episodes as drunken episodes. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the inability to organize daily activities around erratic attacks took its effect. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the small liberties 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 documented throughout history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the disease to an evil entity who attacked his victims' heads.

Ancient healing texts suggest bizarre treatments for what modern observers would classify as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a European doctor who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.

The disorder were only officially classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the brain. Leading specialists in treating the condition note this.

In the late 1990s, scientists released the findings of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains slow. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other common head pain disorders, such as migraine, before confirming cluster headaches. A detailed history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a reassuring advisor talked me through oxygen therapy and drugs until the episode passed.

National guidance on management advise that patients are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But leading specialists believe the official guidelines need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout determines the treatment.” Brief cycles with infrequent attacks are managed with acute therapy only. Longer or more severe periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that decreases nerve signals.

The national guidance need revising to reflect a