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It was a gloomy Monday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation sprang behind my right eye. This was followed by rapid jolts, reminiscent of lightning bolts. As each class came and went, the discomfort eased and then returned with greater force. Four times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The headaches appeared frequently that fall, and again in the spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-on agony in class by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with intense pain around a single eye that persists for several hours.

About one in 1,000 people suffer by the condition, and men are more frequently diagnosed. Attacks usually begin with sudden, excruciating pain focused on a single eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in periodic bouts; others have chronic attacks, characterized by the absence of extended pain-free periods.

What connects patients is the severity. One study rated the sensation at 9.7 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster patients reported suicidal thoughts amid attacks; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to many causes, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan daily activities around erratic attacks took its effect. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe 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 significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

Ancient healing records suggest bizarre treatments for what modern observers would describe as a headache disorder. In the medieval times, severe headache was identified as a separate disorder, with treatments including bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only formally classified by international headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the brain. Prominent experts in treating the condition explain this.

In the late 1990s, scientists published the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such advances, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by ruling out other primary head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first go to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in 2021; a calm volunteer guided them through oxygen therapy and drugs until the attack passed.

National guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which apparently helps manage the bouts of some people.

But leading specialists believe the guidance need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the bout determines the approach.” Short bouts with occasional attacks are handled with acute therapy alone. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a