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It began on a gloomy Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a intense pain bloomed behind my one eye. This was followed by rapid stabs, similar to lightning bolts. As each class progressed, the discomfort eased and then came back with greater intensity. Multiple 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 aspirin, but the pain remained unbearable.

The headaches appeared frequently that autumn, and once more in the spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. 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 GP finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with severe discomfort behind one eye that lasts for three hours.

About 1 in 1000 people suffer by the disorder, and males are more frequently affected. Attacks usually begin with sudden, excruciating agony around a single eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in periodic cycles; others have continuous attacks, characterized by the absence of extended symptom-free periods.

What unites patients is the severity. One study rated the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate found 64% of cluster patients reported suicidal thoughts amid bouts; the number dropped to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to many triggers, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.

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

Still, the inability to organize daily activities around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the ailment to an evil entity who afflicted his sufferers' heads.

Historical medical texts propose unusual treatments for what modern experts would describe as a migraine. In the middle ages, migraine was recognised as a separate condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first detailed description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.

The disorder were only officially classified by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the head. Leading specialists in treating the condition explain this.

In 1998, researchers published the results of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, published in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such advances, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four operations before eventually being diagnosed in recently, after a physician looked up his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other common headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which side do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She thinks dentists still need much more education. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in 2021; a calm volunteer guided them through oxygen therapy and medication until the attack passed.

National guidance on management advise that sufferers are offered high-dose oxygen and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But leading specialists argue the official guidelines need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the bout dictates the treatment.” Brief cycles with infrequent attacks are handled with acute treatment alone. Longer or more severe bouts 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 discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a