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It was a gloomy weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a intense sensation erupted behind my right eye. It was followed by quick jolts, reminiscent of electric shocks. As each class came and went, the discomfort eased and then came back with greater force. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and once more in the spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could predict the routine: aura in the morning, early twinges on the commute, full-on pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with severe discomfort behind a single eye that lasts up to several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and men are more frequently diagnosed. Cluster headaches typically begin with abrupt, severe pain around one eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in seasonal cycles; others have chronic attacks, defined by the lack of extended symptom-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 10, higher than broken bones or pancreatitis. Another found 64% of cluster headache patients experienced suicidal thoughts amid attacks; the number fell to four percent when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like many triggers, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated behavior. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the failure to organize daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

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

Ancient medical records propose bizarre treatments for what modern experts would classify as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with treatments including herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and vanishing each day at fixed hours”.

The disorder were only formally recognised by global medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Prominent specialists in diagnosing the condition note this.

In 1998, scientists published the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a major medical publication, 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.

In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by eliminating other primary head pain conditions, such as migraine, before confirming cluster headaches. A thorough history is essential: on which side 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 cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She believes dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer guided me through oxygen treatment and medication until the attack eased.

National guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of some individuals.

But leading specialists argue the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the treatment.” Brief cycles with occasional episodes are managed with abortive treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that decreases nerve activity.

The national guidelines need revising to reflect a