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It was a dreary Monday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sharp pain erupted behind my one eye. This was followed by rapid stabs, similar to electric shocks. As each class came and went, the discomfort subsided and then returned with increased intensity. Multiple times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and once more in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could anticipate the routine: aura in the shower, early twinges on the commute, full-on agony in class by 9.30am. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with intense pain behind a single eye that lasts for several hours.

Approximately one in 1,000 people suffer by the disorder, and males are more often diagnosed. Attacks usually start with sudden, severe pain around one eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in periodic bouts; some patients have chronic attacks, defined by the absence of long pain-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm during attacks; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like many causes, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated behavior. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the failure to plan daily activities around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties 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 facility.

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Headaches have been documented across the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the ailment to an evil spirit who attacked his sufferers' heads.

Historical medical texts propose bizarre treatments for what modern observers would describe as a migraine. In the medieval times, severe headache was recognised as a separate condition, with treatments including bloodletting to other, more folk cures.

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

The disorder were only officially classified by global medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery that supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.

In 1998, scientists released the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, identification remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before finally being diagnosed in recently, after a physician looked up his complaints.

Specialists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the attack eased.

Official guidelines on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently soothes the bouts of some individuals.

But leading specialists believe the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Short cycles with infrequent episodes are managed with acute therapy alone. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that reduces nerve activity.

The official guidance need updating to reflect a