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It began on a dreary Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. Then came quick jolts, similar to lightning bolts. As each class progressed, the discomfort eased and then returned with greater intensity. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I tried aspirin, but the pain remained unbearable.

The attacks returned frequently that fall, and once more in spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could predict the routine: aura in the morning, early twinges on the train, full-on pain in the classroom by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with severe pain behind a single eye that persists up to three hours.

Approximately 1 in 1000 individuals suffer by the condition, and men are more often affected. Cluster headaches usually begin with abrupt, excruciating agony focused on a single eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in periodic bouts; others have chronic attacks, defined by the lack of long pain-free periods.

What unites patients is the severity. One study scored the pain at 9.7 10, higher than broken bones or other conditions. Another discovered 64% of cluster headache patients experienced suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to many triggers, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her attacks as drunken episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Still, the failure to organize daily activities around unpredictable attacks took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate 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 Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.

Ancient medical records suggest bizarre treatments for what some experts would describe as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more folk remedies.

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

The disorder were only officially classified by international headache 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 delivers blood to the head. Prominent specialists in diagnosing the condition note this.

In 1998, researchers published the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in recently, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other common head pain conditions, such as migraine, before confirming the disorder. A thorough history is crucial: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first go to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in 2021; a calm advisor talked me through oxygen treatment and medication until the episode eased.

National guidance on management recommend that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Preventive options include verapamil, which reportedly helps manage the bouts of well-known people.

But leading specialists argue the guidance need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Short cycles with infrequent attacks are managed with abortive treatment only. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The official guidelines need updating to reflect a