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It began on a overcast Monday morning in September 2016. I was working as a teacher, trying to settle a new class, when a intense sensation erupted behind my one eye. This was followed by rapid shocks, similar to lightning bolts. As each class progressed, the pain subsided and then came back with increased force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unbearable.

The headaches appeared frequently that autumn, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense pain behind a single eye that persists for three hours.

Approximately one in 1,000 people suffer by the disorder, and men are more frequently affected. Attacks typically start with abrupt, excruciating agony focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have an episodic type, which arrives in periodic cycles; some patients have chronic attacks, characterized by the absence of extended symptom-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster headache patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, like several causes, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to plan life around unpredictable pain took its effect. She particularly disliked being unable to plan outings, 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 appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Historical medical records propose unusual remedies for what some observers would describe as a headache disorder. In the middle ages, migraine was identified as a separate condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.

Cluster headaches were only officially classified by global headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the brain. Prominent experts in diagnosing the condition explain this.

In the late 1990s, scientists released the results of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, published in a prominent journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being correctly identified in recently, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring advisor talked me through oxygen therapy and drugs until the episode eased.

National guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the bouts of well-known people.

But consultant neurologists argue the guidance need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout determines the approach.” Brief cycles with infrequent attacks are handled with abortive therapy only. Longer or more intense bouts require preventative medications 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 reduces nerve activity.

The official guidelines need updating to reflect a