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It began on a gloomy weekday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden pain bloomed behind my right eye. Then came quick shocks, similar to lightning bolts. As the school day progressed, the pain eased and then returned with greater intensity. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The attacks returned frequently that autumn, and once more in the spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-blown pain in the classroom by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe discomfort behind one eye that persists up to several hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more often diagnosed. Attacks usually begin with sudden, severe pain focused on one eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in periodic cycles; others have continuous cluster headaches, defined by the absence of long pain-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the figure fell to four percent when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like several triggers, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her family often interpreted her attacks as intoxicated episodes. Support 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 moving, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate 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 the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Historical medical texts suggest unusual treatments for what some observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with therapies including bloodletting to other, more folk cures.

It was a Dutch physician who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.

The disorder were only officially classified by global headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery that delivers blood to the brain. Prominent experts in diagnosing the disorder note this.

In 1998, researchers published the findings of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, identification remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four operations before finally being correctly identified in recently, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other primary headache disorders, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She believes dentists still need greater awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a calm volunteer talked them through oxygen therapy and medication until the episode eased.

National guidelines on management advise that patients are offered high-dose oxygen and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of some people.

But leading neurologists argue the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Brief cycles with infrequent episodes are managed with acute therapy alone. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the head where the discomfort is that reduces nerve signals.

The national guidance need updating to reflect a