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It was a overcast Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain sprang behind my right eye. It was followed by quick shocks, similar to lightning bolts. As the school day progressed, the pain eased and then returned with greater intensity. Four times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I took aspirin, but the agony remained unbearable.

The headaches returned frequently that fall, and again in the spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could predict the pattern: aura in the shower, early twinges on the commute, full-on agony in the classroom by mid-morning. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with intense pain behind a single eye that persists for several hours.

Approximately one in 1,000 individuals suffer by the disorder, and men are more frequently diagnosed. Attacks typically begin with abrupt, severe pain focused on a single eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in periodic bouts; some patients have chronic cluster headaches, defined by the lack of long pain-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 10, more severe than bone fractures or other conditions. A separate found 64% of cluster headache patients reported suicidal thoughts amid bouts; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to many causes, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a national neurology center.

Still, the failure to plan daily activities around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the simple 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 facility.

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Headaches have been described throughout history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the disease to an evil spirit who attacked his sufferers' heads.

Ancient healing texts propose bizarre remedies for what modern observers would classify as a migraine. In the medieval times, severe headache was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more folk cures.

It was a European physician who provided the initial detailed account of a cluster headache. In his medical observations, he describes 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 the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major artery that supplies blood to the head. Leading specialists in treating the condition explain this.

In 1998, scientists published the findings of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in recently, after a physician researched his complaints.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She believes the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a calm advisor talked me through oxygen therapy and drugs until the episode passed.

National guidelines on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But leading specialists believe the guidance need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the bout determines the treatment.” Brief cycles with infrequent episodes are handled with acute therapy alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that decreases nerve activity.

The national guidelines need updating to reflect a