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It was a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sudden sensation erupted behind my right eye. This was followed by quick shocks, similar to electric shocks. As the school day progressed, the pain eased and then returned with increased force. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I took aspirin, but the agony remained unrelenting.

The attacks appeared repeatedly that fall, and again in spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the train, full-on pain in class by 9.30am. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with severe discomfort around one eye that lasts for three hours.

Approximately one in 1,000 people are affected by the condition, and men are more frequently diagnosed. Cluster headaches usually begin with abrupt, excruciating agony focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in periodic bouts; some patients have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster headache patients experienced suicidal thoughts amid attacks; the number fell to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to several triggers, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her episodes as drunken episodes. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky 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 attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize daily activities around unpredictable attacks took its effect. She especially disliked 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 most severe episodes. “It steals from you of the simple freedoms we don't appreciate 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 documented throughout history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the disease to an evil entity who afflicted his victims' heads.

Ancient medical records suggest bizarre treatments for what some experts would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.

The disorder were only formally classified by international medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the brain. Leading experts in treating the disorder note this.

In the late 1990s, scientists released 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 journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which side do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an attack in early 2021; a calm volunteer talked them through oxygen therapy and medication until the episode passed.

Official guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But leading neurologists believe the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle determines the treatment.” Brief cycles with infrequent attacks are handled with acute treatment alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that decreases nerve signals.

The national guidance need revising to reflect a