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It was a overcast weekday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden sensation sprang behind my one eye. Then came quick shocks, like lightning bolts. As each class progressed, the pain eased and then came back with greater force. Multiple times that day I left a colleague with activities and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The attacks appeared frequently that fall, and once more in spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-blown agony in class by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with severe discomfort around a single eye that persists up to three hours.

About 1 in 1000 people are affected by the condition, and males are more often affected. Attacks usually start with sudden, severe agony focused on a single eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in seasonal bouts; some patients have chronic cluster headaches, defined by the lack of extended symptom-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster patients experienced thoughts of self-harm amid bouts; the number fell to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, similar to many causes, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated behavior. Support eventually came from her parent and then from her husband, Rod. “I was very lucky 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 time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the inability to organize life around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the disease to an malevolent entity who afflicted his victims' heads.

Historical medical records propose unusual remedies for what modern experts would classify as a migraine. In the medieval times, severe headache was identified as a separate disorder, with treatments ranging from herbal concoctions 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 severe headache happening and disappearing each day at fixed hours”.

The disorder were only officially classified by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the head. Prominent experts in diagnosing the disorder note this.

In the late 1990s, scientists released the results of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given unsuitable treatments.

A charity trustee, 78, has experienced the condition for most of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a reassuring volunteer guided them through oxygen treatment and medication until the attack passed.

National guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of some individuals.

But leading specialists argue the guidance need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout determines the approach.” Short cycles with infrequent attacks are managed with abortive treatment only. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a