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It was a overcast Monday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation erupted behind my right eye. This was followed by rapid stabs, similar to electric shocks. As the school day came and went, the pain eased and then came back with greater force. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks appeared repeatedly that fall, and once more in the spring, soon establishing an yearly cycle. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the commute, full-blown pain in class by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with severe pain around a single eye that persists for several hours.

Approximately 1 in 1000 people suffer by the disorder, and males are more frequently affected. Cluster headaches usually start with sudden, severe agony around a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in periodic bouts; others have continuous attacks, characterized by the lack of extended pain-free periods.

What connects patients is the severity. One study rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like several causes, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated episodes. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Still, the inability to organize life around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe 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 episode inside a facility.

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Headaches have been described throughout history. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the disease to an evil entity who attacked his victims' heads.

Ancient medical texts suggest bizarre remedies for what some observers would classify as a migraine. In the middle ages, migraine was identified as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

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

Cluster headaches were only officially classified by global medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the head. Leading experts in diagnosing the condition explain this.

In 1998, researchers released the findings of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, featured in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being diagnosed in recently, after a physician looked up his complaints.

Specialists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has experienced 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 molars extracted because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a calm volunteer talked them through oxygen treatment and drugs until the attack passed.

Official guidance on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of some people.

But consultant specialists argue the guidance need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Short bouts with infrequent attacks are handled with abortive treatment only. Longer or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a