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It began on a gloomy weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sudden pain bloomed behind my one eye. It was followed by quick shocks, reminiscent of electric shocks. As the school day came and went, the discomfort subsided and then returned with greater force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.

The headaches returned frequently that fall, and again in the spring, soon forming an annual pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the shower, early pangs on the commute, full-on agony in the classroom by mid-morning. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense pain around one eye that persists up to three hours.

Approximately 1 in 1000 people are affected by the condition, and men are more frequently affected. Attacks usually begin with abrupt, severe agony focused on one eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in periodic cycles; others have continuous cluster headaches, characterized by the absence of extended pain-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the number fell to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to many triggers, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Still, the failure to organize daily activities around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't value 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 history. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the disease to an evil spirit who attacked his sufferers' heads.

Ancient medical records suggest unusual treatments for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments including bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing each day at fixed hours”.

The disorder were only officially recognised by global headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, scientists released the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four operations before finally being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as migraine, before confirming the disorder. A detailed patient history is essential: on which side do signs occur? For how much time? What season? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for most 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 pulled because dentists misunderstood her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an bout in early 2021; a calm volunteer guided them through oxygen treatment and medication until the episode eased.

Official guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently soothes the bouts of some individuals.

But leading neurologists argue the guidance need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout determines the treatment.” Short cycles with occasional attacks are managed with acute treatment alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that reduces nerve signals.

The official guidance need updating to reflect a