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It was a gloomy weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation erupted behind my right eye. This was followed by rapid stabs, similar to electric shocks. As each class came and went, the discomfort subsided and then came back with greater force. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I took paracetamol, but the pain remained unbearable.

The attacks appeared frequently that autumn, and again in spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-blown pain in class by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with intense discomfort behind one eye that persists for three hours.

About one in 1,000 people suffer by the condition, and males are more often diagnosed. Attacks typically begin with abrupt, excruciating agony focused on a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal cycles; some patients have continuous attacks, characterized by the absence of long symptom-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts during bouts; the number dropped to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to several triggers, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often interpreted her attacks as intoxicated behavior. Support eventually 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 hid her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to organize daily activities around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

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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 attributed the disease to an evil entity who attacked his sufferers' heads.

Historical healing records suggest bizarre treatments for what some experts would classify as a migraine. In the medieval times, severe headache was recognised as a separate condition, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

The disorder were only formally classified by global headache societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the brain. Leading specialists in treating the condition explain this.

In 1998, scientists released the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, featured in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before finally being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given unsuitable therapies.

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 20s, she had her molars pulled because dental professionals misinterpreted her pain. She believes dentists still need much more awareness. When another patient sought help from a charity, it was she who responded. 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 passed.

National guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of well-known people.

But leading specialists believe the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout dictates the treatment.” Short bouts with infrequent episodes are managed with abortive therapy alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the head where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a