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It began on a dreary weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a intense sensation bloomed behind my right eye. This was followed by quick stabs, like lightning bolts. As each class progressed, the pain eased and then returned with increased intensity. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and once more in the spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the morning, early twinges on the train, full-blown pain in class by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with intense pain behind one eye that lasts for three hours.

About 1 in 1000 people are affected by the condition, and males are more frequently diagnosed. Attacks typically start with sudden, severe pain focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in seasonal cycles; some patients have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What unites sufferers is the intensity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the figure fell to 4% 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 hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like several causes, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its toll. She particularly disliked 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 small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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

Ancient healing records propose unusual treatments for what some experts would classify as a migraine. In the medieval times, migraine was recognised as a distinct condition, with therapies including bloodletting to other, more folk remedies.

It was a European physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only formally classified by international medical 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 which delivers blood to the brain. Leading experts in diagnosing the condition explain this.

In 1998, scientists published the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The results, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such progress, identification remains delayed. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four operations before finally being diagnosed in recently, after a doctor looked up his complaints.

Neurologists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She believes dentists still need greater education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the attack eased.

National guidance on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But leading specialists argue the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout dictates the treatment.” Short bouts with occasional episodes are handled with acute treatment only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that decreases nerve activity.

The national guidance need revising to reflect a