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It began on a overcast weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation erupted behind my one eye. This was followed by rapid stabs, similar to lightning bolts. As the school day came and went, the pain eased and then came back with greater force. Four times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I tried aspirin, but the pain remained unbearable.

The attacks appeared frequently that fall, and once more in the spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-blown agony in the classroom by 9.30am. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically begin with intense pain around one eye that lasts up to several hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more often diagnosed. Cluster headaches usually begin with sudden, severe pain focused on 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 facial sweating. I have the episodic form, which arrives in seasonal bouts; others have chronic attacks, defined by the absence of extended symptom-free periods.

What unites sufferers is the intensity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to many triggers, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize daily activities around unpredictable attacks took its effect. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the ailment to an evil entity who attacked his victims' heads.

Historical healing records suggest bizarre remedies for what some experts would describe as a migraine. In the medieval times, migraine was recognised as a separate condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.

The disorder were only formally recognised by international 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 supplies blood to the brain. Leading specialists in diagnosing the condition note this.

In 1998, researchers released the results of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, published in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before finally being correctly identified in recently, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 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 20s, she had her teeth pulled because dentists misinterpreted her pain. She believes the dental profession 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 bout in 2021; a calm advisor guided me through oxygen therapy and drugs until the attack passed.

National guidelines on management advise that patients are offered high-dose oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of well-known individuals.

But consultant neurologists believe the official guidelines need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout dictates the approach.” Short cycles with occasional attacks are managed with abortive treatment alone. Longer or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that reduces nerve signals.

The official guidance need updating to reflect a