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It began on 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 sensation erupted behind my one eye. Then came rapid jolts, similar to electric shocks. As each class came and went, the discomfort eased and then returned with increased force. Four times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The headaches returned repeatedly that fall, and once more in the spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-on agony in class by 9.30am. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with severe pain around a single eye that lasts up to three hours.

About one in 1,000 individuals suffer by the condition, and men are more frequently diagnosed. Cluster headaches typically start with abrupt, severe pain focused on one eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in seasonal bouts; some patients have chronic cluster headaches, defined by the lack of long symptom-free periods.

What unites sufferers is the severity. One study rated the pain at 9.7 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm during bouts; the number dropped to 4% when they were not in pain.

One patient, 74, a long-term sufferer from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to many causes, made things worse. After having sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.

Still, the inability to plan 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 family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The first description of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They linked the ailment to an evil entity who attacked his victims' heads.

Ancient healing records propose bizarre remedies for what some experts would describe as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with therapies including herbal concoctions to other, more folk remedies.

It was a European doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

Cluster headaches were only officially classified by global medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the head. Prominent experts in treating the disorder explain this.

In 1998, scientists released the findings of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, featured 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.

In spite of such advances, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: 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 redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She believes dentists still need much more education. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an attack in early 2021; a calm advisor guided them through oxygen therapy and drugs until the attack eased.

National guidance on management recommend that sufferers are offered high-flow oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently soothes the bouts of well-known people.

But leading neurologists argue the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle determines the treatment.” Short cycles with infrequent attacks are managed with abortive therapy alone. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a