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It was a gloomy weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sharp pain erupted behind my right eye. Then came quick jolts, reminiscent of lightning bolts. As each class progressed, the discomfort subsided and then came back with increased force. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I took aspirin, but the agony remained unbearable.

The attacks returned frequently that autumn, and again in spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could predict the routine: aura in the morning, early pangs on the commute, full-on agony in class by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically begin with severe discomfort around a single eye that persists up to three hours.

About 1 in 1000 people suffer by the condition, and men are more frequently affected. Attacks typically begin with sudden, excruciating pain focused on one eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in periodic bouts; others have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like several causes, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her family 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 exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to plan daily activities around erratic pain took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from 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 attack inside a portable toilet.

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Headaches have been documented throughout history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.

Historical medical records suggest bizarre remedies for what some observers would classify as a headache disorder. In the medieval times, migraine was identified as a separate condition, with therapies including bloodletting to other, more folk remedies.

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

Cluster headaches were only officially recognised by international headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the brain. Prominent experts in diagnosing the condition explain this.

In the late 1990s, scientists released the results of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, diagnosis remains delayed. One man's symptoms began 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 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 low, but not in agony,” a doctor says. He works by eliminating other common head pain disorders, such as migraine, before confirming the disorder. A detailed history is crucial: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an attack in early 2021; a calm advisor talked them through oxygen therapy and medication until the episode eased.

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

But leading neurologists believe the guidance need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle determines the approach.” Short cycles with infrequent attacks are handled with acute therapy alone. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that reduces nerve signals.

The official guidance need updating to reflect a