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It was a gloomy weekday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain erupted behind my right eye. This was followed by quick jolts, like electric shocks. As each class progressed, the discomfort subsided and then returned with increased force. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and again in spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with severe pain around a single eye that lasts up to three hours.

Approximately one in 1,000 people suffer by the condition, and men are more frequently diagnosed. Attacks typically start with sudden, excruciating agony around one eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in seasonal bouts; others have continuous cluster headaches, characterized by the absence of long pain-free periods.

What unites patients is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found a significant percentage of cluster patients experienced suicidal thoughts during bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, like many causes, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her attacks as drunken behavior. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the inability to organize daily activities around erratic pain took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation 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 recalls obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described across the ages. “The first 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 evil spirit who attacked his sufferers' heads.

Historical healing records propose bizarre remedies for what modern observers would describe as a migraine. In the medieval times, migraine was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more folk cures.

It was a European doctor who provided the first detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day 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 believed to be caused by a issue with a key artery that delivers blood to the head. Leading specialists in diagnosing the disorder note this.

In 1998, researchers released the findings of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being correctly identified in 2014, after a physician researched his complaints.

Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which side do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She believes dentists still need much more education. When another patient sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in 2021; a calm volunteer guided them through oxygen therapy and medication until the episode eased.

Official guidance on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.

But leading neurologists argue the guidance need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Brief bouts with occasional episodes are handled with acute therapy alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a