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It began on a gloomy Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain sprang behind my one eye. This was followed by rapid shocks, similar to electric shocks. As each class progressed, the discomfort subsided and then returned with greater intensity. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.

The attacks returned frequently that autumn, and once more in spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-blown agony in class by mid-morning. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense discomfort around one eye that persists for several hours.

Approximately 1 in 1000 people are affected by the condition, and men are more frequently diagnosed. Cluster headaches usually start with sudden, excruciating agony focused on a single eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in periodic cycles; some patients have continuous attacks, characterized by the lack of long pain-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found 64% of cluster headache patients reported suicidal thoughts amid attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to several triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Still, the inability to organize daily activities around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the simple liberties 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 facility.

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Headaches have been documented across the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the disease to an malevolent entity who attacked his victims' heads.

Historical medical texts suggest unusual treatments for what some observers would describe as a headache disorder. In the middle ages, migraine was identified as a separate condition, with therapies including herbal concoctions to other, more folk cures.

It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only formally classified by international headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the head. Leading specialists in treating the condition note this.

In the late 1990s, researchers published the findings of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such advances, identification remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which side do signs appear? For how much time? What season? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches 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 molars extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the episode eased.

National guidelines on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the attacks of well-known individuals.

But consultant specialists believe the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout dictates the approach.” Short bouts with occasional attacks are managed with acute treatment alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that decreases nerve signals.

The national guidelines need revising to reflect a