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It began on a overcast weekday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a intense sensation erupted behind my right eye. It was followed by rapid jolts, reminiscent of electric shocks. As the school day progressed, the pain subsided and then returned with greater force. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and once more in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-on agony in the classroom by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with intense pain around a single eye that persists up to several hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more often diagnosed. Cluster headaches typically begin with sudden, excruciating pain around one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; others have chronic attacks, characterized by the absence of extended pain-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate found 64% of cluster headache patients experienced thoughts of self-harm during bouts; the number dropped to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to many triggers, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical 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 specialist hospital.

Still, the failure to organize life around unpredictable attacks took its effect. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical healing texts suggest bizarre remedies for what modern experts would classify as a migraine. In the medieval times, severe headache was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a European physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only formally classified by global headache societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the head. Prominent experts in treating the disorder note this.

In the late 1990s, researchers published the findings of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms began 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 eventually being diagnosed in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as migraine, before confirming the disorder. A thorough patient history is essential: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She believes dentists still need much more education. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor guided me through oxygen treatment and drugs until the attack eased.

Official guidelines on management advise that patients are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of well-known people.

But leading neurologists argue the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Short cycles with infrequent episodes are handled with acute therapy only. Longer or more intense bouts 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 area of the skull where the pain is that decreases nerve activity.

The national guidelines need revising to reflect a