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It was a overcast weekday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense sensation sprang behind my one eye. It was followed by quick jolts, similar to electric shocks. As each class came and went, the pain eased and then returned with greater intensity. Four times that day I left a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and once more in spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-blown pain in class by mid-morning. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with severe pain behind a single eye that persists for three hours.

About 1 in 1000 individuals are affected by the disorder, and males are more frequently affected. Attacks usually start with abrupt, excruciating pain around one eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in seasonal bouts; some patients have chronic attacks, defined by the absence of extended symptom-free periods.

What connects patients is the severity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate discovered 64% of cluster headache patients reported suicidal thoughts during bouts; the number fell to four percent when they were not in pain.

One patient, 74, a chronic 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 attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to many causes, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks 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 clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize life around unpredictable attacks took its toll. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Historical medical texts suggest unusual treatments for what modern observers would describe as a migraine. In the middle ages, severe headache was identified as a separate condition, with treatments including bloodletting to other, more folk cures.

It was a European doctor who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing each day at specific hours”.

Cluster headaches were only officially classified by international medical committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the head. Prominent experts in diagnosing the condition note this.

In the late 1990s, researchers published the results of a study for which they had induced cluster headaches 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 sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such advances, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my left 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 managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as migraine, before confirming the disorder. A detailed history is crucial: on which side do signs occur? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in 2021; a reassuring advisor talked them through oxygen therapy and medication until the attack eased.

Official guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of some individuals.

But leading specialists believe the guidance need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Brief cycles with infrequent attacks are handled with abortive therapy only. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that decreases nerve activity.

The official guidance need updating to reflect a