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It was a gloomy weekday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation bloomed behind my one eye. This was followed by quick jolts, reminiscent of lightning bolts. As the school day progressed, the discomfort eased and then came back with greater intensity. Four 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 tried ibuprofen, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and again in the spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the train, full-on pain in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with intense discomfort behind a single eye that persists up to three hours.

About one in 1,000 individuals suffer by the condition, and men are more frequently affected. Cluster headaches usually begin with sudden, excruciating pain around a single eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in periodic bouts; others have chronic attacks, characterized by the lack of long symptom-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 a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the figure fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to many causes, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated behavior. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the inability to plan life around unpredictable pain took its effect. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the small freedoms 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 portable toilet.

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Headaches have been described throughout the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient healing records suggest unusual remedies for what some observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with therapies including bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only officially recognised by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the brain. Prominent specialists in treating the disorder explain this.

In the late 1990s, scientists released the findings of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, published 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 advances, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes dentists still need much more education. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in 2021; a calm volunteer talked me through oxygen therapy and drugs until the attack eased.

Official guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of some people.

But leading neurologists argue the official guidelines need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Brief cycles with occasional episodes are managed with abortive treatment only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a