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It was a gloomy weekday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense sensation erupted behind my right eye. Then came quick jolts, similar to lightning bolts. As each class came and went, the pain eased and then returned with greater force. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unbearable.

The attacks appeared repeatedly that autumn, and again in the spring, soon establishing an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-blown pain in class by 9.30am. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with intense discomfort behind one eye that persists for three hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more often diagnosed. Attacks usually begin with abrupt, excruciating agony around one eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in seasonal cycles; some patients have chronic cluster headaches, defined by the absence of extended pain-free periods.

What connects sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered 64% of cluster headache patients reported suicidal thoughts amid bouts; the figure fell to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like many triggers, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the inability to organize life around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, 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 simple 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 throughout the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Historical healing records suggest bizarre remedies for what modern observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the initial detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at fixed hours”.

The disorder were only formally classified by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the brain. Leading experts in diagnosing the disorder note this.

In 1998, scientists published the results of a study for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, published in a major medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, identification remains delayed. One man's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four operations before finally being diagnosed in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other primary head pain conditions, such as migraine, before confirming the disorder. A thorough patient history is crucial: on which part of the head do symptoms occur? 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 the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her pain. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in 2021; a calm volunteer guided me through oxygen therapy and medication until the episode eased.

Official guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the bouts of some people.

But leading neurologists argue the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Brief cycles with infrequent episodes are managed with abortive treatment alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a