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It began on a overcast weekday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense sensation bloomed behind my one eye. It was followed by rapid jolts, similar to lightning bolts. As each class progressed, the discomfort eased and then returned with greater force. Four times that day I handed over a teaching assistant with activities 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 autumn, and again in spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the commute, full-blown agony in the classroom by 9.30am. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with intense discomfort around a single eye that lasts up to several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more frequently diagnosed. Attacks usually start with sudden, excruciating pain focused on one eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in periodic bouts; some patients have continuous attacks, defined by the lack of long pain-free periods.

What connects patients is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster patients experienced thoughts of self-harm during attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to several triggers, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.

Nevertheless, the failure to plan life around erratic pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the disease to an evil spirit who afflicted his victims' heads.

Historical healing records suggest bizarre remedies for what modern observers would classify as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with treatments including bloodletting to other, more superstitious remedies.

It was a European doctor who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.

Cluster headaches were only officially recognised by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major blood vessel that supplies blood to the head. Prominent specialists in treating the disorder note this.

In 1998, scientists published the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The results, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such progress, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough history is essential: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced the condition for the majority of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack passed.

National guidelines on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But leading neurologists believe the guidance need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle determines the approach.” Short bouts with occasional attacks are managed with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a