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It began on a dreary Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sudden sensation erupted behind my one eye. It was followed by rapid jolts, like electric shocks. As each class came and went, the pain subsided and then came back with increased force. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The headaches returned frequently that autumn, and once more in spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could predict the routine: aura in the morning, early twinges on the commute, full-on agony in class by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often begin with intense discomfort around one eye that persists up to three hours.

About 1 in 1000 people suffer by the disorder, and males are more frequently diagnosed. Cluster headaches typically begin with sudden, severe pain around a single eye that peaks within minutes and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in seasonal bouts; others have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster headache patients experienced suicidal thoughts amid attacks; the figure dropped to four percent when they were not in pain.

One patient, 74, a chronic sufferer from Wales, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to several causes, made things more intense. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often mistook her episodes as drunken episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the inability to organize daily activities around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family 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 major concert, only to have an attack inside a facility.

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Headaches have been described across history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the disease to an evil entity who attacked his victims' heads.

Historical medical records propose unusual treatments for what modern observers would classify as a migraine. In the middle ages, severe headache was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the initial detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

The disorder were only formally classified by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the brain. Prominent experts in diagnosing the condition explain this.

In the late 1990s, scientists released the findings of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, featured in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being correctly identified in recently, after a physician researched his symptoms.

Neurologists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by eliminating other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do signs occur? 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 the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She thinks dentists still need much more education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in 2021; a calm volunteer guided me through oxygen treatment and medication until the episode passed.

Official guidance on management recommend that patients are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently soothes the attacks of well-known people.

But leading neurologists argue the guidance need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Brief bouts with infrequent episodes are handled with abortive treatment alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that reduces nerve activity.

The national guidance need revising to reflect a