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It was a gloomy Monday morning in September 2016. I was working as a educator, trying to settle a new class, when a sudden sensation bloomed behind my right eye. It was followed by rapid jolts, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then came back with greater force. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I took aspirin, but the pain remained unrelenting.

The headaches returned repeatedly that fall, and once more in the spring, soon establishing an annual cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the train, full-on pain in the classroom by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with intense discomfort behind a single eye that persists up to three hours.

Approximately 1 in 1000 individuals suffer by the condition, and men are more often diagnosed. Cluster headaches usually start with abrupt, severe pain focused on a single eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in periodic bouts; others have continuous attacks, characterized by the absence of extended symptom-free periods.

What unites patients is the intensity. One study scored the pain at 9.7 out of 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like several triggers, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often mistook her episodes as intoxicated behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid 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 failure to organize life around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described across the ages. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.

Historical medical records propose unusual remedies for what modern experts would classify as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with therapies including herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the initial detailed account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing each day at specific hours”.

Cluster headaches were only formally classified by global headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the head. Prominent specialists in diagnosing the disorder explain this.

In the late 1990s, scientists published the results of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such advances, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a reassuring volunteer talked me through oxygen treatment and medication until the episode eased.

Official guidelines on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.

But leading specialists argue the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle determines the treatment.” Brief cycles with infrequent episodes are handled with acute therapy only. Longer 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 procedure into the area of the skull where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a