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It began on a dreary weekday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation bloomed behind my right eye. This was followed by quick jolts, similar to lightning bolts. As each class came and went, the discomfort subsided and then returned with greater force. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The attacks appeared frequently that autumn, and again in the spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could predict the routine: aura in the shower, early twinges on the commute, full-on agony in the classroom by mid-morning. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe discomfort around a single eye that persists for several hours.

About one in 1,000 individuals are affected by the condition, and males are more often affected. Attacks usually start with abrupt, severe agony focused on a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in periodic cycles; some patients have continuous attacks, characterized by the absence of extended symptom-free periods.

What unites patients is the severity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the figure dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to several causes, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Support finally came from her father 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 condition. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Nevertheless, the failure to organize life around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Historical healing texts propose bizarre remedies for what modern experts would describe as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with treatments including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

Cluster headaches were only officially classified by international headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Leading experts in treating the disorder note this.

In 1998, researchers published the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains delayed. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in recently, after a physician researched his complaints.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She believes the dental profession still need much more education. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an attack in early 2021; a reassuring advisor guided me through oxygen therapy and drugs until the attack eased.

National guidance on treatment recommend that patients are offered high-flow oxygen and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of well-known individuals.

But consultant specialists argue the guidance need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Short bouts with infrequent attacks are managed with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. 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 official guidance need updating to reflect a