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It was a dreary Monday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a intense sensation erupted behind my one eye. This was followed by quick stabs, similar to electric shocks. As each class came and went, the pain eased and then returned with greater force. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and once more in the spring, soon forming an annual pattern. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

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

About one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Attacks usually begin with abrupt, severe pain around one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal bouts; some patients have chronic attacks, defined by the lack of long symptom-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 10, more severe than broken bones or other conditions. A separate found 64% of cluster patients reported thoughts of self-harm amid attacks; the number dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, like many triggers, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to organize daily activities around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate 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 described throughout history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the disease to an evil spirit who afflicted his sufferers' heads.

Historical medical texts suggest unusual treatments for what some experts would describe as a migraine. In the middle ages, migraine was identified as a separate condition, with therapies ranging from bloodletting to other, more folk remedies.

It was a European doctor who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by international headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In 1998, scientists released the results of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such progress, identification remains delayed. One man's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being diagnosed in recently, after a doctor researched his complaints.

Specialists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by ruling out other primary head pain disorders, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which part of the head do signs occur? For how long? What season? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first go to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a reassuring advisor talked them through oxygen therapy and drugs until the attack passed.

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

But leading specialists believe the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Brief bouts with occasional episodes are handled with abortive therapy only. Longer or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that decreases nerve activity.

The national guidance need revising to reflect a