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It was a gloomy Monday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain bloomed behind my right eye. This was followed by rapid jolts, like electric shocks. As each class came and went, the discomfort subsided and then came back with greater force. Multiple 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 paracetamol, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and again in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-on pain in class by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense pain behind one eye that lasts up to several hours.

About one in 1,000 individuals suffer by the disorder, and men are more frequently affected. Attacks typically start with abrupt, severe pain around a single eye that reaches its peak within minutes and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic cycles; others have continuous attacks, characterized by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients reported suicidal thoughts during bouts; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to many causes, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize life around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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

Ancient healing texts propose bizarre remedies for what some observers would describe as a headache disorder. In the medieval times, severe headache was identified as a separate disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only officially classified by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the brain. Prominent experts in treating the condition note this.

In 1998, scientists released the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains slow. One man's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being correctly identified in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other primary headache disorders, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which side do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist centers. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a reassuring advisor talked them through oxygen therapy and drugs until the episode passed.

National guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the bouts of well-known individuals.

But leading neurologists argue the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Short cycles with infrequent episodes are handled with abortive therapy alone. Longer or more severe bouts require preventives such as verapamil, sometimes paired with steroids. 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 activity.

The national guidance need revising to reflect a