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It was a overcast weekday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp sensation erupted behind my right eye. This was followed by quick stabs, similar to electric shocks. As the school day came and went, the pain subsided and then came back with greater intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and once more in the spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could anticipate the routine: aura in the shower, early twinges on the commute, full-on agony in the classroom by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

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. Cluster headaches typically start with abrupt, excruciating pain focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in periodic bouts; others have continuous attacks, characterized by the lack of extended symptom-free periods.

What connects patients is the severity. One study rated the sensation at 9.7 10, more severe than broken bones or other conditions. Another discovered 64% of cluster headache patients reported suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began 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 deteriorated through her youth. Alcohol in her adolescence, similar to many causes, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the transport home.

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

Nevertheless, the failure to organize daily activities around erratic attacks took its effect. She especially hated being unable to plan outings, 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 steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.

Ancient healing texts suggest unusual treatments for what modern experts would classify as a migraine. In the middle ages, severe headache was recognised as a distinct condition, with therapies ranging from bloodletting 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 “suffering with a very intense headache happening and disappearing each day at specific hours”.

Cluster headaches were only formally classified by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Prominent experts in diagnosing the condition explain this.

In the late 1990s, scientists published the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, published 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 pain, and a deactivation when they felt better.

In spite of such progress, diagnosis remains delayed. Jamie Charteris'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 underwent four surgeries before eventually being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first go to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced the condition for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks dentists still need greater education. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in early 2021; a reassuring volunteer talked them through oxygen treatment and medication until the episode passed.

National guidance on management recommend that sufferers are offered high-flow oxygen and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of well-known individuals.

But leading specialists believe the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Short bouts with occasional episodes are managed with acute treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve activity.

The official guidance need updating to reflect a