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It was a dreary weekday morning in September 2016. I was working as a teacher, trying to settle a new class, when a sharp pain erupted behind my one eye. This was followed by rapid jolts, like lightning bolts. As each class progressed, the pain eased and then came back with increased intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and again in spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the train, full-blown agony in the classroom by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense pain behind one eye that lasts up to several hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more often diagnosed. Attacks usually start with sudden, severe agony focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in seasonal cycles; some patients have continuous attacks, characterized by the absence of extended pain-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the figure fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, like many causes, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often mistook her episodes as drunken episodes. Support eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the failure to plan daily activities around unpredictable attacks took its toll. She particularly disliked 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 paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the disease to an evil spirit who attacked his sufferers' heads.

Ancient medical texts suggest bizarre remedies for what some observers would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with treatments ranging from bloodletting to other, more folk cures.

It was a European physician who provided the first detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.

Cluster headaches were only formally recognised by international headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the brain. Leading specialists in treating the condition note this.

In the late 1990s, researchers published the findings of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in recently, after a physician looked up his complaints.

Neurologists say wait times in diagnosing 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 eliminating other common headache conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do signs occur? For how long? What season? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist 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 hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She thinks dentists still need greater education. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in 2021; a reassuring volunteer guided me through oxygen treatment and medication until the episode passed.

National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the attacks of well-known people.

But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout dictates the treatment.” Short bouts with occasional attacks are handled with abortive treatment alone. Longer or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that reduces nerve activity.

The national guidance need updating to reflect a