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It began on a dreary Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a intense pain erupted behind my one eye. Then came rapid stabs, like lightning bolts. As the school day came and went, the discomfort subsided and then came back with greater force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that autumn, and again in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the shower, early twinges on the train, full-on pain in class by mid-morning. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense pain around a single eye that persists for several hours.

About one in 1,000 people suffer by the condition, and men are more frequently diagnosed. Cluster headaches typically start with sudden, severe pain around one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in seasonal bouts; some patients have chronic attacks, defined by the absence of long pain-free periods.

What connects patients is the intensity. One research paper scored the sensation at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her adolescence, like many causes, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the inability to organize life around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the ailment to an evil spirit who afflicted his sufferers' heads.

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

It was a Dutch physician who provided the first detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

Cluster headaches were only officially classified by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Prominent experts in treating the disorder explain this.

In 1998, scientists released the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. 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 pain, and a deactivation when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is essential: on which side do signs occur? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a reassuring volunteer guided me through oxygen treatment and medication until the episode passed.

National guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of well-known people.

But leading specialists argue the guidance need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout determines the approach.” Brief cycles with infrequent episodes are managed with abortive treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a