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It began on a dreary weekday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a intense pain sprang behind my one eye. This was followed by quick jolts, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then came back with increased intensity. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The headaches appeared frequently that autumn, and once more in spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-blown agony in class by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with severe pain around one eye that persists for several hours.

About 1 in 1000 individuals are affected by the disorder, and men are more often affected. Cluster headaches usually start with sudden, severe pain around a single eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in seasonal bouts; others have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, like many 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 family often interpreted her episodes as intoxicated episodes. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the inability to plan life around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient medical records propose unusual remedies for what some observers would describe as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with treatments including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially classified by global headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the head. Prominent experts in diagnosing the condition explain this.

In 1998, scientists released the results of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before finally being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other common headache conditions, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which side do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a charity, it was she who replied. I remember 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 drug administered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of some individuals.

But consultant neurologists argue the official guidelines need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Short bouts with occasional episodes are managed with abortive therapy only. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a