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It was a overcast Monday morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense pain sprang behind my right eye. This was followed by quick jolts, similar to lightning bolts. As the school day progressed, the pain subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and once more in spring, soon forming an annual 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 agony in the classroom by 9.30am. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with intense discomfort around one eye that persists up to several hours.

Approximately 1 in 1000 people are affected by the disorder, and males are more frequently affected. Cluster headaches usually begin with sudden, severe agony around one eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have an episodic type, which occurs in seasonal bouts; some patients have chronic cluster headaches, defined by the lack of extended symptom-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another found a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to several causes, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated episodes. Support finally 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 condition. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the inability to organize life around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the disease to an malevolent entity who attacked his victims' heads.

Ancient healing records propose unusual remedies for what modern observers would classify as a headache disorder. In the medieval times, migraine was identified as a separate condition, with treatments ranging from herbal concoctions to other, more folk remedies.

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

The disorder were only formally recognised by global medical 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. Prominent experts in treating the disorder note this.

In 1998, researchers released the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in recently, after a doctor looked up his complaints.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in 2021; a calm advisor talked me through oxygen treatment and drugs until the attack eased.

National guidance on management recommend that sufferers are offered high-flow oxygen and/or a specific drug administered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which apparently helps manage the bouts of some people.

But leading specialists believe the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Brief bouts with occasional episodes are managed with abortive therapy alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a