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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 group of students, when a sharp sensation erupted behind my one eye. This was followed by quick stabs, like lightning bolts. As each class came and went, the discomfort subsided and then returned with greater force. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I tried aspirin, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and once more in the spring, soon forming an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-on pain in class by mid-morning. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with intense discomfort behind one eye that lasts for three hours.

Approximately one in 1,000 people are affected by the condition, and males are more often affected. Cluster headaches usually begin with sudden, severe pain around a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in seasonal cycles; some patients have chronic cluster headaches, characterized by the lack of long pain-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 10, higher than broken bones or other conditions. A separate found 64% of cluster headache patients reported suicidal thoughts amid bouts; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like many triggers, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often interpreted her attacks as intoxicated episodes. Support finally came from her parent 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, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the failure to organize daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Ancient healing texts propose unusual treatments for what some observers would classify as a migraine. In the middle ages, migraine was recognised as a separate condition, with therapies including bloodletting to other, more folk remedies.

It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.

The disorder were only formally recognised by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the head. Leading experts in diagnosing the condition explain this.

In 1998, researchers published the findings of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in 2014, after a doctor researched his complaints.

Specialists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first go to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has experienced the condition for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a calm advisor talked them through oxygen treatment and drugs until the attack passed.

National guidance on management recommend that patients are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But leading neurologists believe the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Brief cycles with infrequent episodes are managed with abortive therapy alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the pain is that decreases nerve activity.

The official guidance need updating to reflect a