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It began on a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sharp sensation erupted behind my right eye. This was followed by quick stabs, like lightning bolts. As the school day came and went, the pain eased and then came back with increased force. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and again in spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could predict the pattern: aura in the morning, early twinges on the commute, full-on agony in the classroom by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with intense discomfort around a single eye that persists for three hours.

Approximately one in 1,000 people suffer by the disorder, and males are more frequently affected. Cluster headaches usually begin with sudden, severe pain focused on one eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in seasonal bouts; others have chronic attacks, characterized by the lack of long symptom-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like many causes, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated behavior. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.

Still, the inability to plan daily activities around erratic attacks took its effect. She particularly hated 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 paralysis caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the disease to an malevolent spirit who afflicted his victims' heads.

Ancient medical records suggest unusual remedies for what modern observers would describe as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with treatments ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only officially classified by international medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the head. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, scientists released the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by ruling out other common headache disorders, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist centers. But many first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack eased.

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

But leading neurologists believe the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Short bouts with infrequent attacks are handled with abortive therapy only. Longer or more intense bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a