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It began on a overcast Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a intense pain sprang behind my right eye. This was followed by rapid stabs, like electric shocks. As each class progressed, the pain eased and then came back with increased force. Four times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The attacks returned frequently that autumn, and again in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-blown agony in the classroom by mid-morning. In 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with intense pain behind a single eye that persists for several hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more frequently diagnosed. Attacks typically begin with sudden, excruciating pain around one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in seasonal cycles; others have continuous cluster headaches, defined by the absence of long symptom-free periods.

What unites patients is the intensity. One study scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster headache patients reported suicidal thoughts amid attacks; the figure fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, similar to several causes, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to plan life around unpredictable attacks took its toll. She particularly 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 paralysis caused by the worst episodes. “It robs you of the small freedoms 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 across history. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the disease to an evil spirit who attacked his victims' heads.

Historical healing texts propose unusual treatments for what modern observers would classify as a migraine. In the medieval times, severe headache was recognised as a separate condition, with therapies including herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the first comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.

The disorder were only officially recognised by international medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the brain. Prominent experts in treating the disorder explain this.

In the late 1990s, scientists published the results of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, featured in a major medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, diagnosis remains delayed. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before eventually being diagnosed in recently, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which side do signs occur? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But many first go to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an bout in 2021; a reassuring volunteer talked them through oxygen therapy and medication until the episode eased.

National guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But consultant specialists believe the official guidelines need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout dictates the treatment.” Short cycles with infrequent episodes are managed with acute treatment alone. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that decreases nerve activity.

The official guidance need updating to reflect a