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It was a overcast weekday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense pain erupted behind my right eye. This was followed by quick stabs, similar to electric shocks. As the school day came and went, the discomfort eased and then returned with greater intensity. Multiple times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and again in spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with severe discomfort around a single eye that lasts for three hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more frequently affected. Cluster headaches typically start with sudden, severe pain around one eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in seasonal cycles; others have continuous attacks, defined by the absence of long pain-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients reported suicidal thoughts amid bouts; the figure fell to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” 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 remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the failure to organize daily activities around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family 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 recalls 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 earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.

Historical healing records suggest bizarre remedies for what some experts would describe as a migraine. In the medieval times, severe headache was recognised as a separate condition, with treatments ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.

The disorder were only officially classified by global headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the head. Leading specialists in diagnosing the disorder note this.

In the late 1990s, researchers released the results of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before finally being correctly identified in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks dentists still need much more education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in early 2021; a reassuring advisor guided them through oxygen therapy and drugs until the attack eased.

Official guidelines on management recommend that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of some people.

But consultant specialists believe the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout determines the approach.” Short bouts with occasional episodes are managed with acute therapy alone. Longer or more severe bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a