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It began on a gloomy weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a intense pain sprang behind my right eye. Then came rapid stabs, reminiscent of lightning bolts. As each class came and went, the pain eased and then came back with greater force. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.

The attacks returned repeatedly that autumn, and once more in the spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-on pain in the classroom by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

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

About one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Cluster headaches usually begin with sudden, severe pain focused on one eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; some patients have chronic cluster headaches, defined by the lack of extended symptom-free periods.

What connects patients is the severity. One study rated the pain at 9.7 out of 10, higher than broken bones or other conditions. Another found a significant percentage of cluster patients experienced suicidal thoughts during bouts; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like several causes, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to plan daily activities around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the disease to an evil entity who afflicted his victims' heads.

Ancient healing texts propose bizarre remedies for what some observers would describe as a migraine. In the medieval times, severe headache was identified as a distinct condition, with treatments including herbal concoctions to other, more folk remedies.

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

Cluster headaches were only formally classified by international medical societies in 1988. From the 1960s 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 diagnosing the disorder explain this.

In the late 1990s, scientists published the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in 2014, after a physician looked up his complaints.

Specialists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other primary headache conditions, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But many first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She believes dentists still need greater education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a calm advisor talked me through oxygen therapy and drugs until the episode eased.

National guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which apparently soothes the attacks of some people.

But leading specialists believe the official guidelines need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle dictates the treatment.” Brief bouts with occasional episodes are handled with acute treatment only. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that decreases nerve signals.

The national guidance need updating to reflect a