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It was a dreary weekday morning in September 2016. I was working as a educator, trying to settle a new class, when a intense pain erupted behind my right eye. This was followed by rapid shocks, similar to lightning bolts. As the school day progressed, the pain eased and then came back with increased force. Four times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The attacks returned repeatedly that fall, and once more in the spring, soon establishing an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the train, full-on pain in the classroom by mid-morning. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe pain behind one eye that persists up to several hours.

About 1 in 1000 people are affected by the condition, and males are more frequently diagnosed. Attacks typically begin with sudden, severe pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in seasonal bouts; others have chronic cluster headaches, defined by the absence of long symptom-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients reported suicidal thoughts amid attacks; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, similar to many causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often interpreted her attacks as drunken behavior. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to plan daily activities around erratic pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the disease to an evil entity who attacked his victims' heads.

Historical healing records propose bizarre treatments for what modern experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a European doctor who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.

The disorder were only formally classified by international headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the head. Prominent specialists in treating the disorder note this.

In the late 1990s, researchers published the results of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple operations before eventually being diagnosed in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the episode passed.

National guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.

But consultant neurologists believe the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle determines the approach.” Short cycles with infrequent attacks are managed with abortive therapy alone. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a