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It began on a gloomy Monday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sudden pain bloomed behind my one eye. It was followed by rapid shocks, like electric shocks. As the school day came and went, the pain eased and then came back with increased intensity. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I tried aspirin, but the agony remained unbearable.

The attacks returned repeatedly that fall, and once more in the spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could predict the routine: a warning sensation 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 specialist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense pain around one eye that persists up to three hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more frequently diagnosed. Cluster headaches typically start with sudden, severe pain around one eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in periodic bouts; others have chronic attacks, defined by the absence of extended symptom-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the number fell to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to several causes, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to plan life around unpredictable pain took its effect. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the disease to an evil entity who afflicted his victims' heads.

Ancient healing texts suggest unusual remedies for what some experts would classify as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.

The disorder were only officially classified by global headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the brain. Leading specialists in treating the condition explain 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 results, published in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before finally being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common headache disorders, such as migraine, before confirming cluster headaches. 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, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the attack eased.

National guidance on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of some people.

But leading specialists argue the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle dictates the treatment.” Short bouts with infrequent episodes are handled with abortive treatment alone. Longer or more intense periods require preventives 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 skull where the pain is that reduces nerve signals.

The official guidance need revising to reflect a