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It was a gloomy Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sharp pain bloomed behind my right eye. This was followed by quick jolts, similar to lightning bolts. As each class progressed, the discomfort subsided and then returned with greater intensity. Multiple times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the agony remained unbearable.

The attacks appeared frequently that fall, and once more in the spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the shower, early twinges on the commute, full-on pain in class by 9.30am. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense discomfort around one eye that lasts for three hours.

Approximately 1 in 1000 people are affected by the disorder, and males are more frequently affected. Cluster headaches usually begin with abrupt, excruciating agony around a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in periodic cycles; others have chronic attacks, characterized by the absence of extended symptom-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the number dropped to four percent when they were not in pain.

One patient, 74, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to many causes, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken episodes. Understanding eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to organize life around erratic pain took its effect. She especially hated being unable to plan outings, 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 value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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

Historical healing texts propose bizarre treatments for what some experts would describe as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more folk cures.

It was a European doctor who provided the initial detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at specific hours”.

Cluster headaches were only officially recognised by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the head. Leading specialists in treating the disorder explain this.

In 1998, researchers published the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before finally being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” one says. He proceeds by ruling out other primary headache conditions, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She believes dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the episode eased.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a specific medication administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of some people.

But leading neurologists argue the guidance need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Short bouts with infrequent attacks are handled with abortive therapy alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that reduces nerve signals.

The national guidance need updating to reflect a