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It was a gloomy weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation sprang behind my one eye. It was followed by rapid shocks, like electric shocks. As the school day progressed, the discomfort subsided and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and again in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the shower, early pangs on the train, full-on pain in the classroom by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often begin with severe pain behind one eye that persists for several hours.

About 1 in 1000 people suffer by the disorder, and men are more frequently affected. Cluster headaches usually begin with sudden, severe agony around one eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in seasonal bouts; others have continuous attacks, characterized by the absence of extended symptom-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients reported suicidal thoughts amid attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, like many triggers, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a specialist hospital.

Nevertheless, the failure 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 children during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the disease to an malevolent entity who afflicted his sufferers' heads.

Ancient medical texts suggest unusual remedies for what some observers would classify as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with therapies including herbal concoctions to other, more superstitious cures.

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

The disorder were only formally classified by international medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel that supplies blood to the head. Leading specialists in diagnosing the condition explain this.

In 1998, researchers published the findings of a study for which they had triggered 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 discomfort, and a reduction when they felt better.

In spite of such advances, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in recently, after a physician researched his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by eliminating other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in 2021; a calm volunteer talked them through oxygen treatment and medication until the episode passed.

National guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of some people.

But consultant neurologists argue the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout determines the treatment.” Brief bouts with infrequent attacks are handled with abortive therapy only. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. 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 signals.

The national guidance need updating to reflect a