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It began on a dreary weekday morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense pain erupted behind my one eye. Then came rapid jolts, similar to lightning bolts. As the school day came and went, the pain eased and then returned with greater intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cool water. I tried aspirin, but the agony remained unbearable.

The attacks appeared frequently that fall, and once more in the spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-on agony in class by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

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

Approximately one in 1,000 individuals suffer by the disorder, and men are more frequently diagnosed. Attacks typically start with sudden, excruciating pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in periodic bouts; others have chronic cluster headaches, defined by the absence of long pain-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered 64% of cluster headache patients reported suicidal thoughts amid attacks; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like many triggers, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated episodes. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its effect. She especially hated being unable to plan social events, being seen as flaky 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 small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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

Historical healing records suggest unusual remedies for what modern experts would classify as a migraine. In the medieval times, severe headache was identified as a separate condition, with treatments including bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by global headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the brain. Prominent experts in diagnosing the disorder note this.

In 1998, researchers published the findings of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, published in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, diagnosis remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before eventually being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He works by ruling out other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in 2021; a reassuring volunteer talked me through oxygen treatment and medication until the episode eased.

Official guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of some individuals.

But leading specialists believe the guidance need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Brief cycles with infrequent episodes are managed with acute treatment only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that reduces nerve signals.

The national guidelines need updating to reflect a