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It began on a gloomy Monday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. This was followed by rapid stabs, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cool water. I took paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and once more in spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could predict the pattern: aura in the morning, early pangs on the train, full-blown agony in class by 9.30am. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe pain around one eye that lasts for several hours.

About 1 in 1000 people suffer by the condition, and men are more frequently diagnosed. Cluster headaches typically begin with abrupt, excruciating pain focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in seasonal bouts; others have continuous attacks, characterized by the lack of long pain-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like many triggers, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks as drunken episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Still, the failure to plan daily activities around erratic pain took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.

Historical healing texts suggest bizarre remedies for what modern experts would describe as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with therapies including herbal concoctions to other, more folk cures.

It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only officially recognised by international headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the head. Prominent experts in treating the disorder note this.

In 1998, scientists released the results of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, 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 the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being diagnosed in recently, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But many 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 has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes dentists still need much more education. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an attack in 2021; a reassuring advisor talked them through oxygen treatment and drugs until the attack eased.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which apparently helps manage the bouts of some people.

But leading neurologists argue the official guidelines need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Short cycles with occasional episodes are handled with acute therapy only. Longer or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a