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It was a overcast weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp pain sprang behind my right eye. Then came quick jolts, like lightning bolts. As the school day came and went, the discomfort eased and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and again in the spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the train, full-on pain in the classroom by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with intense discomfort behind one eye that persists up to three hours.

About one in 1,000 people suffer by the condition, and men are more often diagnosed. Cluster headaches usually begin with abrupt, severe pain around a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, characterized by the absence of extended pain-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered 64% of cluster patients experienced suicidal thoughts during bouts; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like several causes, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Still, the inability to plan daily activities around unpredictable pain took its effect. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Ancient medical records suggest unusual treatments for what modern observers would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a European doctor who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only formally classified by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the brain. Prominent experts in treating the disorder explain this.

In 1998, scientists published the results of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in recently, after a doctor looked up his complaints.

Specialists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She believes dentists still need much more education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a calm advisor talked me through oxygen therapy and drugs until the episode passed.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But leading specialists argue the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Brief cycles with occasional attacks are handled with abortive treatment only. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired 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 discomfort is that reduces nerve activity.

The official guidance need revising to reflect a