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It was a dreary Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sudden sensation sprang behind my right eye. Then came rapid jolts, similar to lightning bolts. As each class progressed, the pain eased and then came back with greater force. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak 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 forming an annual cycle. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-on agony in class by mid-morning. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition often start with severe discomfort around one eye that persists for three hours.

Approximately 1 in 1000 individuals are affected by the condition, and men are more often affected. Cluster headaches usually begin with sudden, severe pain focused on a single eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in periodic cycles; some patients have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to several triggers, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated behavior. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the failure to organize life around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical medical records propose bizarre remedies for what some experts would classify as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk cures.

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

Cluster headaches were only officially classified by international medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the brain. Leading experts in diagnosing the condition explain this.

In the late 1990s, scientists released the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such advances, identification remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in 2014, after a physician researched his symptoms.

Specialists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other primary headache conditions, such as migraine, before confirming the disorder. A detailed patient history is essential: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, 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 molars extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a calm volunteer guided me through oxygen treatment and drugs until the attack passed.

National guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of well-known individuals.

But consultant specialists argue the official guidelines need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Short bouts with infrequent episodes are handled with acute treatment only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a