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It began on a dreary weekday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden pain bloomed behind my right eye. Then came rapid jolts, similar to lightning bolts. As each class came and went, the pain eased and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I took aspirin, but the pain remained unbearable.

The attacks appeared frequently that autumn, and again in spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the commute, full-on agony in the classroom by mid-morning. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

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

About one in 1,000 people are affected by the condition, and men are more frequently affected. Cluster headaches usually start with sudden, excruciating pain around one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in periodic cycles; others have continuous attacks, characterized by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 10, higher than bone fractures or other conditions. Another found 64% of cluster patients experienced suicidal thoughts during bouts; the number dropped to four percent when they were not in pain.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to many causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated behavior. Support finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan daily activities around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

Historical medical records suggest bizarre treatments for what some observers would classify as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with therapies ranging from bloodletting to other, more folk remedies.

It was a European doctor who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.

The disorder were only formally classified by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the brain. Leading experts in treating the disorder note this.

In 1998, scientists published the results of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such advances, identification remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common headache disorders, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first go to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her symptoms. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in 2021; a reassuring advisor talked me through oxygen therapy and drugs until the attack passed.

National guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a specific drug administered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of well-known individuals.

But consultant specialists argue the official guidelines need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Short bouts with infrequent attacks are handled with acute therapy alone. Longer or more intense bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that decreases nerve signals.

The national guidance need revising to reflect a