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It began on a dreary Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense pain sprang behind my right eye. This was followed by quick jolts, similar to electric shocks. As each class came and went, the discomfort eased and then came back with greater force. Four times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and once more in spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could anticipate the routine: aura in the shower, early pangs on the commute, full-blown agony in class by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe discomfort around a single eye that lasts for several hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more often diagnosed. Attacks typically begin with sudden, excruciating pain around a single eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in periodic bouts; others have chronic attacks, characterized by the lack of extended pain-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the figure fell to 4% when they were pain-free.

One patient, 74, a long-term patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like many triggers, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan life around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining 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 description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Ancient medical records suggest bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing daily at fixed hours”.

The disorder were only officially classified by global headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the brain. Prominent specialists in treating the disorder note this.

In the late 1990s, scientists released the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, featured in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four operations before eventually being correctly identified in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by ruling out other common headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is essential: on which side do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But many first arrive to emergency rooms 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 teeth pulled because dentists misunderstood her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in 2021; a calm advisor talked me through oxygen treatment and medication until the attack eased.

Official guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of some people.

But consultant specialists believe the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the bout dictates the approach.” Short bouts with occasional episodes are managed with acute treatment alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a