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It was a dreary Monday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sharp pain sprang behind my right eye. It was followed by rapid stabs, similar to lightning bolts. As each class progressed, the discomfort subsided and then returned with greater intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.

The headaches returned repeatedly that fall, and again in the spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-on pain in class by mid-morning. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense pain behind a single eye that persists for three hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Cluster headaches typically begin with sudden, excruciating agony focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in seasonal cycles; others have continuous cluster headaches, defined by the lack of extended pain-free periods.

What connects sufferers is the severity. One research paper scored the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster patients experienced suicidal thoughts amid attacks; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like many causes, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated episodes. Support eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to organize life around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Historical medical texts suggest unusual remedies for what modern experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with therapies including herbal concoctions to other, more folk cures.

It was a European physician who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.

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

In 1998, researchers published the findings of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, featured in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such progress, identification remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four surgeries before eventually being diagnosed in 2014, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which side do signs appear? For how long? What season? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a calm advisor talked them through oxygen treatment and medication until the episode passed.

National guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known individuals.

But leading neurologists believe the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Brief bouts with infrequent attacks are managed with abortive treatment only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that decreases nerve activity.

The official guidelines need revising to reflect a