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It was a dreary weekday 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 sensation bloomed behind my right eye. It was followed by rapid jolts, reminiscent of electric shocks. As each class came and went, the pain eased and then came back with increased force. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I took aspirin, but the pain remained unbearable.

The headaches returned frequently that fall, and once more in spring, soon establishing an annual cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition often start with severe pain around one eye that persists up to several hours.

About 1 in 1000 individuals suffer by the condition, and males are more often diagnosed. Attacks typically begin with abrupt, severe agony around a single eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in periodic cycles; others have chronic cluster headaches, characterized by the lack of extended pain-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster patients experienced thoughts of self-harm during attacks; the figure fell to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to several causes, made things more intense. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated episodes. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a national hospital.

Nevertheless, the failure to plan life around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky 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 simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the disease to an evil spirit who attacked his victims' heads.

Historical medical records propose unusual remedies for what modern experts would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

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

Cluster headaches were only formally classified by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the brain. Prominent specialists in diagnosing the condition note this.

In 1998, scientists released the findings of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before eventually being correctly identified in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which side do signs occur? For how much time? What season? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in 2021; a reassuring advisor talked them through oxygen treatment and drugs until the episode eased.

Official guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But leading specialists believe the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Short bouts with occasional episodes are managed with acute therapy only. Longer or more severe bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a