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It was a gloomy Monday morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense sensation bloomed behind my one eye. Then came rapid shocks, similar to electric shocks. As the school day progressed, the discomfort subsided and then returned with greater force. Four times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and again in the spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could anticipate the routine: aura in the morning, early twinges on the commute, full-on agony in the classroom by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense discomfort around a single eye that lasts up to three hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more frequently diagnosed. Cluster headaches usually begin 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, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in seasonal cycles; some patients have chronic attacks, defined by the absence of extended pain-free periods.

What unites patients is the severity. One study scored the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients reported suicidal thoughts during bouts; the figure dropped to 4% when they were pain-free.

One patient, 74, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her teens, like many causes, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated behavior. Understanding finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Nevertheless, the inability to plan daily activities around unpredictable attacks took its effect. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the ailment to an evil entity who afflicted his victims' heads.

Historical healing records suggest unusual remedies for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a separate condition, with treatments including herbal concoctions to other, more folk remedies.

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

Cluster headaches were only formally recognised by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the head. Leading specialists in treating the disorder explain this.

In the late 1990s, scientists published the results of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a major medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four operations before eventually being diagnosed in recently, after a physician researched his complaints.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other common head pain disorders, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a calm advisor guided them through oxygen treatment and drugs until the episode eased.

National guidance on treatment advise that sufferers are offered high-dose oxygen and/or a specific drug delivered by injection. No tablets or opioids should be used. Preventive options include verapamil, which reportedly helps manage the bouts of some people.

But consultant neurologists argue the official guidelines need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle dictates the approach.” Brief bouts with infrequent attacks are managed with abortive therapy only. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the head where the pain is that decreases nerve signals.

The national guidance need revising to reflect a