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It began on a overcast weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a intense sensation bloomed behind my right eye. Then came quick stabs, like lightning bolts. As the school day progressed, the pain eased and then returned with greater intensity. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The attacks returned frequently that autumn, and once more in spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could predict the routine: aura in the morning, early twinges on the train, full-blown agony in the classroom by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often begin with intense pain around a single eye that lasts up to several hours.

About one in 1,000 individuals are affected by the condition, and men are more often affected. Cluster headaches usually start with abrupt, excruciating agony focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in seasonal cycles; others have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients reported suicidal thoughts amid bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to several causes, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated behavior. 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 took clerical work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a national hospital.

Still, the failure to organize life around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the disease to an evil entity who attacked his victims' heads.

Ancient healing texts suggest unusual remedies for what some experts would classify as a migraine. In the middle ages, migraine was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only officially recognised by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the head. Prominent specialists in treating the disorder note this.

In the late 1990s, researchers released the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in 2014, after a physician looked up his complaints.

Specialists 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 confirming cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She believes dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a calm advisor guided them through oxygen therapy and medication until the episode eased.

Official guidance on management advise that patients are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the bouts of some people.

But leading neurologists believe the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout determines the treatment.” Short bouts with occasional episodes are managed with acute treatment only. Longer or more severe bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a